“In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis.”
Endometriosis by definition is a disease process whereby tissue somewhat like the endometrium (the lining of the uterus) exists outside the uterus. This “rogue” endometrial-like tissue most commonly involves the peritoneum, a thin layer of tissue that lines the pelvic structures, the bowel, the bladder and the ovaries. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways.
Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.
Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery.
A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain.
In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.
In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.
The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially, most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity.
As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually, the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.
Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.
Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.
The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.
I have had many issues with pelvic pain since I was in highschool. I was diagnosed with ovarian cysts, but the doctor assured me they would resolve on their own and there was no need to worry. Fast foward a few years later and I still had almost constant pain, which worsened around my period. My doctor suggested I see a specialist as he thought it may be endometriosis. After about a year waiting for the specialist appointment I was more than eager to find out forsure what was going on. To my dissappointment the doctor immediately gave me progesterone pills and that was that. I was so deflated at that point I didn’t ask all the questions I wanted answered. Sorry for the novel, I suppose my real question for you is, is it wrong of me to want a laproscopy? I was afraid to mention this to the specialiat becuase he seemed very dismissive, but I want to know forsure if I have a time limit on having kids, or if I even have a chance…
Thanks for your time, I hope to hear from you.
You are welcome to call our office at 408-358-2511 if you would like to chat about your case or have a complimentary record review. Certainly with pelvic pain a laparoscopy is in order, to find or rule out endometriosis or possible other causes of your pain. A good case review would also help. Please feel free to call if we can help you. Thank you for your post. Margaret
Hello I am 15 and have been dealing with end since i was 13 and i was wondering of there is an effective way to help deal with the excruciating pain?
For me, and many others with endo, we have found that a change of diet and lifestyle can minimize symptoms or make them disappear altogether including shrinking endo lesions and cysts. If you’re interested, the ‘endo diet’ is a good place to start, but the advice of Medical Medium Anthony William will take you a lot further.
As the husband of a young woman who has been through 6 or 7 or 8 laparoscopies, including one to remove her uterus at age 25, I can tell you that this person is not a specialist if he is being dismissive to you. I would find someone different if they are not meeting your physical and emotional needs. Good luck and God bless you. I may not have to feel the pain myself, but I have to witness my wife’s daily struggle, including intense endo pain less than a week after having another successful laparoscopy to remove endometriosis growths. The strength of the women who suffer from this is amazing. God bless you all.
I just wanted to say that reading over this brought tears to my eyes. I was only properly diagnosed with endometriosis this year, at the age of 23. I have been dealing with debilitating pain since I was 15, and had to leave school on the first day because I was in so much pain, I couldn’t see straight.
It’s terrible that this isn’t a better known and talked about issue. Many women deal with it, without even knowing what is happening to them. Even now, I’m sitting at my desk and work, and working through the pain because I have to.
This issue has caused my to lose jobs in the past, because I didn’t know what was wrong with me, and would call in when it flared up. For me, personally, it has caused irregular periods (sometimes I have them every two weeks), nausea, vomiting, dizziness, exhaustion, and weight loss from the inability to eat properly when these symptoms effect me.
My job thinks I call in because I don’t want to be at work, and because physically I look fine, they think I’m lying if I ask to go home when it becomes too much. Ibuprofen generally does NOT help, but they say things like, “Well if you’re just going to sit at home doing nothing, why don’t you just sit at work, making money?”
That’s only because they don’t understand how hard it is to stay awake and sitting upright, when all you want to do is curl up under warm blankets and sleep until I can’t feel it anymore.
If there’s anything we can do, maybe work seminars or even bringing it up in schools, it would be amazing. I had no idea about this disease until I was diagnosed with it, and had been living with all my friends and family thinking I was a liar for years. That can be even more painful than the disease itself.
Yes! I absolutely agree more light needs to be focused on Endometriosis. It’s a horrible, painful experience that can come at any time of day- clear out of the blue! You are exactly right how you just want to be at home under a warm blanket with warm compresses sleeping until no
More pain! General public needs to be more aware of this problem and enlightened on how endometriosis patients are feeling!
Mario, your wife is lucky to have you. Thank you for caring! Cassandra, your post in December was just right on target. This invisible disease causes us to even doubt ourselves & believe we must be doing something wrong & that, therefore, we can fix it. But nothing seems to work; others invalidate us, & life feels more like a prison. One week we can feel normal, the next we’re lying in a bed, having quite suddenly become ‘inexplicably’ exhausted. At the same time our appetites have disappeared! Eating becomes a huge chore & we wonder how we suddenly became an invalid drinking Ensure (until we realize the soy might make things worse — “what the heck am I going to eat now?!”) When will we feel normal again, is the question on our minds. It’s infuriating to be lectured by others (such as some men who should be cursed with cramps every time they are arrogant – ha ha) who have never known such a lack of control in a cultural that values control over most everything.
Wow everything I am going threw right now. Glad someone out there can relate to what I’m going threw!
What you said is exactly what I’ve been dealing with since I was 14 and I’m 21 almost 22 now. Nobody understand and I’ve been through the same things as you. Loosing jobs, leaving school, people think ” it’s regualr period pain ” when really it’s not. People really do need to be aware of this disease and specialist need to help you in whatever way they can to your standards. I’ve recently just gotten off of Lutera ( Birth Control ) because the GYNO suggested it since I want to get pregnant but I would have rather went through the surgery knowing that there’s more of a chance of me conceiving. Now I feel like I’m just going to be waiting for nothing. Honestly breaks my heart how bad this disease effects women.
hey Ciara i read your story and i am feeling just the same as you felt…i really wanted to know if endometriosis affects fertility from your experience ..Your answer would really help
thanks in advance
Thank you Cassandra ❤️❤️ I think you have spoken for all who have endoMEtriosUS. Let’s spread the word about we who suffer. You who read this: go to the headmaster/principle of your school. Go to your boss. Tell them!! Any human with a BEATING heart in their chest will most certainly understand. Let’s spread awareness. For those of you who have this horrible but common and excruciating disease and social media, spread this hashtag, and someone start and account and then spread the word about both of these: #endoMEtriosUS @endoMEtriosUSawareness
Hallie❤️ 16 who has endoMEtriosUS
PS: please read my last comment❤️
So not wrong of you. I have the exact same history and I’m in the same boat. I’ve tried all the bc pills and even the progesterone shot … which induced a 7month- long active period (led to anemia), infeculitis, chronic yeast infections, UTIs, kidney infections, and 2 kidney stones.
That was in TX
FF»» now I live in Boulder Colorado and am meeting with my 3rd doctor here (7th total) Tuesday to schedule a laproscopy . I’m convinced it’ll be worth knowing for sure.
Hi Kate! My name is Hallie. I would just like to tell you of the old saying. “It is better to be safe than to be sorry.” You should DEFINITELY get a laposcopy. It is illegal for the doctor to deny you of this test, as it is a disease that is not visible outside of the body. This test is the only way to tell whether or not you have endometriosis. Btw, I am not just an observer of this disease. My aunt Ashley (had 3 miscarraiges) and aunt Mindy, also my mother (had a hysterectomy removing both ovaries ít was so bad, the doctor said it was the worst he had ever seen–at 23) and grandmother (1 ovary removed at 19), and my 2 cousins (who are sisters– had hysterectomies) Erica and Melissa, and great grandmother who had a hysterectomy when she was 17 and she had one ovary removed. Me and my sister have this disease as well. It is horrible- I feel all of your pain. Btw if you counted that makes at least 8 other ladies in my family (instant family I didn’t count 2nd cousins great aunts and such but I have a lot of them that have it. It runs horribly in our family).
Love you all who suffer. #endoMEtriosis #fightingtogether #sendinglove #peopleneedto #stopthinkingwere #exaggerating
Love you guys.
Hallie, 16 and has endoMEtriosis
I’m 11 and I have been dealing with pain for as long as I can remember I don’t know what I have my aunt suggested this I hate it because at night I may have a party or something fun but I have to miss it because I am in pain and I have not even hit my period yet and got a Colenascipy but they say I’m fine but it just gets worse it is like every time something good happen it knows so it hurts me
Always trust your gut instincts. Doing so has saved my life. Long story short I was dismissed by my thyroid specialist when I complained of a lump in my throat, he even rolled his eyes at me in the visit and told me "let's wait till your 4 month review for a scan, you must have a cold!". Because I felt so bad for so long and had waited 8 months for this initial visit I refused to leave his office without my referral for a scan. Fast forward through my scan, then biopsy and surgery to have my whole thyroid removed with said "suspicious lump w/ a 50% chance of being cancer according to the biopsy reaults". The morning after my surgery my surgeon came in with a huge smile on her face. She looked high was so thrilled. She told me they caught it just in time. That taking the nodule out that day prior saved me from thyroid cancer; that she had never seen cells so similiar to cancer that were not cancer yet. She is the chief of surgery at the University of Washington in Seattle, Washington and the best of the best. Her name is Dr. Zern you can look her up for proof. Listen to your body. Push for each and every test. Peace of mind is everything and if you sense something is wrong it is. But I also believe in the miraculous power of the law of attraction and manifesting healing. I believe mine wasn't cancer bc between the biopsy results and surgery I refused to own the scary results as mine. Namaste, Joy
I love looking at your websites. Appreciate it!
I am just wondering. I had a hysterectomy about 15 years ago due to endometriosis. The Dr. left one of my ovaries. I had my gall bladder removed 2 years ago. I have been having severe pain under my sternum in the middle of my abdomen for months that has spread to the left side of my abdomen. I have had every test there is for the stomach, heart, and all other organs in my body but all have come back negative. I was wondering. Can endomotrios still be in my body? Where I hurt? Do you have any advice?
Hi Kim, I am sorry you are having pelvic pain … many surgical techniques vary, so it is possible that endo was missed or perhaps burned instead of being excised. Perhaps you should see a specialist or consult with our office, as we do complimentary phone or internet consults for those interested. Margaret
I’m 23 and was never fully diagnosed with endometriosis, was just told i have ovarian cysts. I’ve noticed more lately that I’m spending more time curled up in fetal position crying due to pain. How would you recommend going about getting it fully checked? I mean it’s getting so painful that it hurts my pelvis, groin and even the upper part of my legs. I’ve been dealing with this since I was about 13 and the doctor has never done any thing more than just an ultrasound and said oh you just have cysts, it’s no big deal. I know endometriosis and pcos run in my family along with ovarian and uterine cancers. I’m just looking for advise on what I should do.
These symptoms are exactly what I had prior to my first endo excision surgery! See a gynaecologist – it most certainly could still be endometriosis
Yes. It is endometriosis again. I am in the same boat as you… I had my partial hysterectomy 11 years ago and guess what I am going thru again… I went to a gyno and she told me that I would now have to have my ovaries taken out or be put on BC to control it… BC really?!?!? Just take them out.
Yes, it can come back. They need to do a full hysterectomy to get rid of the endometrosis. That’s what my doctor told me. So I’m scheduled for a full hysterectomy this next month.
Yes. EndoMEtriosUS can be in both of your ovaries, in one single ovary, or be in one and transition to the other ovary after it is removed from the overy. I am not a professional but I would suggest a laposcopy. EndoMEtriosUS is serious and I know the struggle. PS: be aware that getting your last ovary removed will stop you from ever having children again.
Hallie ❤️❤️ A 16 year old survivor of endoMEtriosUS.
You’re a really practical website; could not make it without ya!
Hello, I have been sick for two years now and finally had surgery in March of this year for Endometriosis diagnosis and and ovarian cyst removal from my left ovary. The ob/gyn found and excised 3 spots of endo and lasered 3 that were in hard to reach places. He removed a large cyst from my left ovary and said I had 2 stalks growing on my fallopian tube which had cyst on them as well and he also removed them. I have such problems with my bladder and bowels and I still don’t know if the places he burned off were on my organs because he never would tell me. He performed a Cystoscopy which leads me to believe it was taken off my bladder. I have never recovered from the surgery to date! I was admitted to the hospital upon my post op check up because of all my pain. I had a catscan with contrast while in the hospital and before being discharged he told me that I had just let the pain get away from me? That’s all! Then the same restrictions as when I had the surgery, light activity and no heavy lifting! The pain has never left. I’m the same as before surgery but 10 times worse because now I think I have a pelvic prolaspe which landed me in the emergency room There I found out that I not only more than likely had a prolapse but I now have Colitis and my Pancreatic enzymes are extremely elevated. They did a Catscan and a Transvaginal Ultrasound , the ER dr said that the TV wand can push the prolapse back up but it can come back down. Is that true? I am now due to see a different gyno and I have to go to the gastroenterenologist . Could my Endo be back already? Plus my Uterus was enlarged. I know it’s alot, sorry I’m just so sick. I’ve lost 18 more pounds since surgery and I didn’t have a period in March, then a 2 day one in April then 3 days of breakthrough spotting the next week.
Oh can I so relate to you, Kimberley. The surgeon I saw eventually dismissed me and was disrespectful to me, because she didn’t know what to do. She performed surgery but didn’t remove anything, because she “couldn’t see anything.” That means she had no idea what to look for. After my last surgery in January, 2005, I lost twenty pounds possibly more. No doctor could figure out why. The pathology from this surgery finally revealed endometriosis on my appendiceal fat and a carcinoid cancer as well.
I know I need another laparoscopy and excision but am terrified to go under the knife again. Also the majority of the endo surgeons where I live don’t accept insurance, and I cannot afford to pay out of pocket.
Yes, your endo could definitely be back. It is a horrific disease. I only pray for a cure.
For four years ive been suffering with tummy cramp and had lots of test and scans, the doctor told me it was actually IBS. Each period the pain would get worse but I just kept putting it off. Christmas 2014 I had pain in my back, tummy, groin and down my leg, I went to a walk in centre and they referred me for an ultrasound, they found I had 3 cyst 2 measuring 4cm and one measuring 7.5cm, since then k have been in and out of hospital several times and been for several tests, ive now been told I also have endomtriosis, it’s taking over my everyday life, im in hospital every other week in absolute agony, im in constant pain 24/7 and I feel as tho the hospital isn’t doing anything to rush the procedure up. I’m now waiting on an MRI to see how bad the endomtriosis is and what it’s effecting. Im taking lots of pain killers, tramadol, morphine patches, codeine etc.. Nothing helps ease the pain and I just don’t know what to do anymore, ive looked at going private but it’s going to cost thousands of pounds. any advice will be so grateful.
Im in the same boat i currently have pain in my tummy and im bloated and feel unwell… its awful.im.waitung surgery also:(
I had my right ovary removed 4 years ago and a hysterectomy 3 years ago. At the beginning I felt great! I had energy! I was actually able to function all day without being tired and the pain went away. Today I get minimal pain, I believe its when I should be on my period but I have a few months feeling very tired and sluggish. I am unsure if I should blame it on the hormones or the endometriosis. Would you have any advice for me? I feel it is slowly taking over again. 🙁
I really enjoy how this article is written. It feels as though while reading it, we’re connecting – as though it was a verbal conversation, rather than a website talking towards you.
I’ve had every test done “under the moon” to figure out what my abdominal pain, which seems to be worse with dysmenorrhea, may be – excluding a laparoscopy which I’m on a waiting list for.
I was told it could be IBS but I was never going to accept that & I know it’s more than that.
SO, my questions are:
– Can ovarian cysts disappear and come back as they wish with NO signs of them being there “in between” and what is the best way to find them?
– Can endometriosis come and leave and leave no signs of it ever being there?
Thank you so much and my apologies for the long message.
Please email back as soon as possible.
There are different kinds of ovarian cysts, and yes some can come and go.
Thanks for the article confirming that my tiredness isn’t just a mental thing. I am from South Africa. Reading all your comments makes me feel blessed to have the gynae I do. At 19, my GP referred me to my current gynae, who immediately recognised the symptoms. I had my first scrape and removal of cysts then. After 2 healthy babies(surprisingly!) I had a hysterectomy at 30, leaving my ovaries in place. I had 5 great, almost pain-free years. Then pain started creeping back. I was getting more and more fatigued. I blamed it on being overworked, getting divorced, having moved. Then recently, during intercourse, it felt like someone had punched me in the stomach, HARD. I consulted a new GP, but it was brushed off. So I went to my old (almost retired) GP. He sent me for a sonar, and the doc there referred me for a CT scan. All this proved the endo and cysts are back with a vengeance. I am 37. It feels like I cannot sleep enough, have constant back pain and pain in my side. Sex is painful. Thankfully, I have visited my same gynae of 18 years. I’ll be having laporoscopic removal of the cysts, the scarring, the endo, and an oopherectomy in 10 days. I am not too happy about losing my ovaries, but if the pain and tiredness will leave my body, I will be in a much better place. Thanks again for the to-the-point article- i’ll be sharing it with my partner so he can understand better what i’m going through xx
Thanks so much for the post.Much thanks again. Keep writing.
Hi i am 40 years of age and my periods are getting worse every month my legs ache i am such an nightmare to live with.. i know this myself, i feel sorry for my partner and kids that they have to put up with me like this, i suffer great pain every month and cry a lot i have been to the doctors and she said my progesterone levels were down and i was taking progesterne tablets but they made me violently sick and gave ne dioreah i just dont know what i can do now
Please visit the website at vitalhealth.com … or call the office at 408-358-2511 if we can assist.
Thank you so much for this article. It really means the world to me right now. I’m 24 and ever since I was about 13 I’ve always struggled with heavy and very painful periods. When I was 17 I went to three different Gynos all who said I had no signs of endometriosis and sent me on my way saying here’s 800 mg ibprophen, it’s just cramps. From that day on I felt stupid like maybe I made up how bad and extreme my period was. And that I was being a baby and this was just a part of life. Every month it was painful and I would count the days till the next and just dread what was coming.
Then back in December 6 months ago I was doubled over on my floor for 3 days extreme pain in my stomach, diarrhea first two days and throwing up that I stopped eating and drinking. The pain settled down and tried to go to the gym drank some water threw it back up and was doubled over again in so much pain. Went into er and 7 hours later after 5 doctors an obgyn discovered my ovary was covered in 5 endometrial cyst and swelled to the size of a coconut twisted in my intestine and blocked off my intestine. Had emergency surgery removed my right ovary. And Fallopian tube and scrapped off what they could of the scar tissue and endometriosis. The next day doctor said I was good to go and see me in a year. I was nervous but trusted him
5 months after this surgery I was still a mess and periods were just as bad as always so I made another appointment with him to find out further things to help my pain . He suggested an iud I got a Pap smear before I could get the iud it came back abnormal so did a biopsy came back high squamous cells cin2, set up an appointment to get LEEP procedure and one week before that apointment same thing happened I was doubled over 2 am on the verge of passing out extreme pain and diarrhea and was taken into er. 5 hours later find out another emergency surgery is needed. In surgery he found and removed 6 in of my bowel that was closed off twisted and was completely covered in scar tissue and mass amount of endometriosis.
This is my story so far I’m now finding a new Gyno who will hopefully listen and stop taking endometriosis so lightly. If there is anything I can tell whoever is reading this please don’t take your health lightly if your in pain , keep pushing and make it known and if your doctor brushes it off like it’s not a big deal please find a new doctor. Endometriosis is serious and not many people will ever understand what it’s really like. Just like this article says
Thank you, Jessica, for sharing your story. The burden this disease places on women is heartbreaking.
Hello Jessica. Your symptoms sound a lot like mine. A couple years ago I had all the same stomach problems and had no clue I had endometriosis. I was rushed to the emergency room 3 different times and had every test possible performed and everything was normal. After my third colonoscopy, they removed what they thought was a polyp and ended up being endo inside my colon. I thought my period cramps were painful but all women experience them so I never complained. After being diagnosed, I started birth control pills but they didn’t help and I was still experiencing cramping and diarrhea all the time. About 9 months after, I had a fourth colonoscopy and laparoscopy. The colonoscopy came back normal with no endo this time. The laparoscopy came back with a small amount of endo they removed. After surgery, I went on the Lupron shots for a year. The lupron wasn’t bad for me. I had minimal pain, no periods and hardly any diarrhea flare ups. I did get some of the side effects; hot flashes, vaginal dryness and lower sex drive but it was worth it to have very little pain. After the year of lupron shots, I had the Mirena iud inserted. It was great for about 9 months and then I started to get excruciating pelvic and lower back pain, gained about 20lbs and have terrible mood swings. I can’t even exercise or have intercourse because it causes the pain to get worse. I’m thinking the iud might be the problem even though the doctor doesn’t think so. I have an appointment to get it removed so I’m keeping my fingers crossed. If that doesn’t help, my doctor wants to perform another laparoscopy which I’m trying to avoid. If you haven’t done so already, I’d think twice about the iud. Several people have said they’ve had the same side effects I did. Unfortunately, I do believe we have to stay on some kind of hormone therapy to keep this disease in check. I totally understand your pain and wish other people would also.
Hi I just want to thank you for the info , I was diagnosed with endo last year August and recently got some sad news that it is back again , and we are struggling to get pregnant. I hade all the procedures to remove it I also had a cyst removed. I’ve been on all kinds of treatments for the endo and for fertility and its very hard , almost like one just want to give up , but when I read all the stories I sometimes get so encourage to go on again, im only 30 this year and really want a baby before I have to go the route if having a hysterectomy cause that might be my last option. im going in soon again to remove some more endo ,unless we fall pregnant this month, we going under again . just wanted to share . Good luck to all the ladies going trough this its not easy.
Im 26 years from South Africa and have had painful and heavy periods ever since i started. 2 yearz ago i had so much pain that sometimes i cudnt move. Went to a Gynae who said i had ovarian cysts and would inject me everytym i went to him. What i noticed is that the pain would be back every month. I changed the doctor and this one first gave me Fermodene and it helped 4 abt 3 months. Ryt nw im on Visanne and stil feel the pain. Help plz!
Hi there, During surgery, do doctors remove all or only some of the endometriosis. I hear that only a few doctors in the U.S. remove all of it (which is most effective).
Thank you for your question …
Effective treatment is complete removal of all endometriosis implants via excision surgery.
Removal of all of the disease is important, but method of removal is critical. Fulguration,
Cauterization, or burning techniques do not result in complete removal of the disease.
Hi all! I was 15 when I was diagnosed with ovarian cysts. I had a laparoscopy done and the Dr told my mom it happened because I was fat. His exact words. Flash forward to 16, I had a grapefruit size cyst on my left ovary. I was in the hospital getting prepped for surgery when it burst. I was cut hip to hip. Now this Dr told my mom that if I had any more pain, it was all in my head. At 19 I had another laparoscopy. Still no relief from the pain. I got married at 22, for 7 years we tried to get pregnant. At 29 I had to have a total hysterectomy. Endometriosis had taken over everything. That was 14 years ago. I’m on hrt. The hot flashes are the worst. I still have cramping. I was in a deep depression until I reached 40. No mini me running around the house. I gained 75 lbs in those 14 years. This year is my year. I’m taking back my life. I’ve lost 45 lbs. Still a long way to go but I’ll get there. I’m seeing a gi Dr soon to see if that’s where the pain is coming from.
Just thought I’d share a bit of my story.
Wow well done. You’ve really been through it. Your a tough cookie xx
I was diagnosed with endometriosis at age 18. I have had 2 laporoscopys removing the lesions by laser and went on to have 2 children. The pain returned and became more aggressive. My gynaecologist advised me to try the Mirena coil which I did – this didn’t work for me, I started getting pains over a 3 week period and severe back pains (was taken into hospital as they thought it may be my kidneys-I knew it wasn’t because the pain was cyclic with my period).
As a process of elimination to find out what the back pains were I was advised again by my gynaecologist to have the Zoledex injection to induce menopause. Yes the pain subsided but I became so ill with severe migraines from the side effects, I only lasted 2 injections. The plan was to have another laparoscopy – the plan fell through as the surgeons advised there would be complications with the surgery (due to 2 previous laparoscopies I developed an umbilical hernia and now have mesh over my umbilicus).
I was offered pain management and left to suffer. The pain is becoming worse, periods getting heavier, migraines returning and I have cyclic hip and back pain including sciatica.
My children and partner are suffering too, I have days where I can’t put on a brave face and carry on and end up crying in agony. I feel as if no one understands what I have to deal with.
My partner tells me I need to go to hospital but I know they won’t do anything. If I didn’t want another child I would opt for a full hysterectomy.
It is such a debilitating disease that’s not acknowledged as much as it should.
Your symptoms sound very similar to mine. I also seem to get cyclical back pain in the left side that travels up into my hip and down my leg. The pain builds before my period (I too was crying with it last week) and then as soon as I come on that pain dies down and is replaced with my “usual” cramping and burning womb/ovary pain. Once my period is over my back feels better but then the pain starts building and the cycle starts again. Sometimes this coincides with urine infections, random bleeding, weird electric shock feelings across my stomach, constipation, migraines…
I’ve recently had a consultation and I’ve been booked in for a lap on 8th March. My consultant wants to rule out endo as he doesn’t think I have it (his main reason is that I don’t have pain during sex, but I’ve met a few endo sufferers who haven’t got this symptom either!), so I guess they won’t know until they go in.
I got an initial diagnosis of endo when I was 19 but my doctor at the time didn’t want to operate on me so he put me on the pill, which I came off after 10 years because I hated it. I’m 33 now and perhaps I’ve put the lap off for too long! Very, very nervous about it but I suppose it’s the only way to know what’s going on.
Hope things have improved for you over the last few months xxx
Hi, could you email me. I seem to have a lot of left side ache too before and after my period. I’d love to talk to you. Sounds like our stories match pretty well.
That’s me each and every month… I was diagnosed after i had 2 cat scans and a biopsy of what the cat scan showed mystery lump/cyst type shape. My Dr’s have been fabulous so I guess I’m really lucky that way but there is no 100% treatment that works and pain relief only takes the edge off it… I have had 3 children so it hadn’t effected my fertility in fact I have been told that the c section I had with my last child was the start of it all but that’s not 100% certain but I hadn’t any problems at all until after my 3rd child born.
This article seriously sums up my life
I’m 19 and have had endo for about 7 years but after being misdiagnosed several times it was only confirmed that I had it at the start of this year
Every day is a constant struggle and no one seems to understand
The fatigue is getting worse and worse to the point I can’t go to work because I physically can’t move
It’s nice to see an article that actually understands
Iv shared it with my friends and family and hopefully they will start to understand what it’s really like for me
THANK YOU, for REALLY understanding and putting it so clear in to words. But most of all for the respect of woman experiences and for honoring that.
I just found out a couple months ago I had endometisisos. They put me back on the depo shot . well I can say it don’t help with the pain. It sucks. The Dr wants to talk about more options. I told her I will not do the lupon depo I really don’t know what to do. I don’t like being in pain. But am scared to ask the Dr for pain meds cause they think everyone one here is on drugs. I was seeing a pain Dr and he didn’t help me so I fired him.
I’ve been sick a little over a year now and it seems like through the various tests over this period of time (Colonoscopy, Upper Endoscopy, Gastric Emptying Study Test, various X-Rays, and an exceedingly normal amount of CT Scans, along with routine urine and blood work) the more I complete, the more answers I have! I vaguely remember when it first began, over 2 years ago, it was all very mild and, from what I think I remember, it focused more on my back than my stomach. But for the past year, i’ve had, I assume, 20 if not more ER trips due to excruciating abdominal pain and an inability to stop myself from vomiting. I’ve been admitted a few times, but the routine is that they give me pain & nausea medication and stabilize me with liquids and other medications through an IV. The pain is so severe I can’t do anything besides sit in a (what my family calls it) “boiling hot” bath water, soaking in it, getting out into a robe so breathe from the heat for a few minutes, and getting back in. Its the only thing that can bring me just a pinch of comfort, but the heat makes me sweat so much that my body can’t help itself to chugging half a bottle of water or Gatorade knowing its going to come back up in a matter of minutes.
Ive had two separate woman, one of which has a medical background and both of which have been treated for endometriosis, tell me that they are certain this is what I have! I have to get abdominal surgery for Internal Prolapse, but my doctors are saying this isn’t related to “whatever it is” I am experiencing that has gotten progressively worse in the past 6-9 months. They want to test me for Chrons disease with a pill endoscopy, but how can I convince them that its important enough they check for this? Of course there is much more to what I have written above, but as a 21 year old mother, I don’t have even know where to begin. I never expected to feel so ill, for so long, with so many unanswered questions and no diagnosis regardless of the multiple tests they’ve ran on me. Where do I start if this is what I could potentially have?
I am having surgery for prolaps as well and they are checking for endometriosis at same time. They may be able for you as well. I am sorry you are in so much pain. Me too, hit water helps, so does heating pads. Try constant birth control pills so you do not have a period for awhile. This will help tell you if it us endimetriisus, as the lining will not grow more when you do not cycle. You may still have pain due to the nature of the disease and extent. I was pain free for years after surgery and on birth control pills. Best of luck for you.I have had 4 children aafter diagnosed in my 20’s. Pain is back now at 43 and people don’t understand how bad it hurts, as bad as childbirth sometimes.
I have been poorly since last October with what started out as water infections leading to a kidney infection. Soon then I developed severe pelvic pain to the point I am crippling over in pain and couldn’t get out of bed. An ultra sound scan revealed I had a 5cm dermoid cyst on my ovary. I was then referred to a gynaecologist to go over my symptoms. While waiting for my appointment I had been in and out of a&e and became even worse with sever vomiting and fever.
I eventually had an emergency laproscopy which to my surprise revealed no cyst at all on my ovary!? But a lot of fluid present – I was then told the cyst had burst and was also diagnosed with endometriosis & polycystic ovarys.
I have also been struggling with urology problems and have had a cystoscopy which everything seemed to look normal. I am now awaiting results from a CT scan & an ultra sound on my bladder & kidneys.
Could the endometriosis be linked to my kidney pain and bladder problems? I constantly feel like my bladder is full & have constant pressure. I am also feeling so exhausted with no energy at all.
Is this all linked? Just wonder if anyone has suffered with the same symptoms? Sorry for the essay!
You should really look into interstitial cystitis. Ic and Endometriosis occur so commonly together that they are referred to as the evil twins. Its certainly worth a mention, and if you can find a Urogynecologist, I would highly recommend.
Yes, I think it may be linked. I was diagnosed with endimetriois in my 29’s and am now 43. It wasnot as severe aafte surgery, being in constant birth control pills and having 4 children. Now, I am in a lot of pain. They are doing a laproscopic surgery on June 2 to see if it is the problem. I pray you find some answers and pain decreases. I also have bladder and bowel issues that I think are linked to endometriosis infiltration. I think the only way to find out is laproscopicallt. Best to you!
I have suffered from the same symptoms I have endo, pcos and just found out I had a prolapse plus I have a cyst on my ovary which I found out today. I’m constantly exhausted and I hate it, I wake up feeling like I haven’t slept and that lasts all day.
I was officially diagnosed last in 2014 with deep infiltrating endometriosis, but I knew since my early 20s I knew that was it. I had such a hard time having doctors believe me and was even misdiagnosed saying I was just tensing my back and she was a endometriosis specialist!! Due to the severity of the pain I ended up becoming an addict to opiates for over 3 years. I finally had a doctor do a laparoscopy even though she said well I guess we can try it, but I’m sure you don’t have it and boy was she wrong. She said it was nothing like she’s ever seen. After that I was kept on pill anything and everything you can think of, but it was to the point even what they were giving me wasn’t enough. I had to go on the streets due to the excessive amounts of opiates I was taking. Finally November of 2014 I went into rehab and have been sober ever since. I still deal with horrible pain every month, but I do take toradol for it which helps extremely. I do take a lot of medication for other issues, but I’m taking each day one day at a time and keep on sticking to my sobriety. Girls we are strong and we can fight this and just know your not alone.
Hi Amy, I have severe endometrosis. I was having several abdominal pain in multiple areas. I was also experiencing constant uti like symptoms, with no actual uti. After lapo surgery it was discovered severe endometrosis had fused my left ovary and colon together and my bladder and uterus together.
During surgery the fused organs were separated and endometrosis lesions removed. The uti like symptoms improved significantly. I no longer have the constant urge to urinate, bloatinglad or lower abdominal pain. The rest of abdominal pain has only increased.
I have learned it takes a very skilled and knowledgeable dr. To remove and treat endometrosis. If you are not getting the treatment/care you need. Please find a new dr. This ishould a difficult disease and needs the best possible care.
Hi, my story is very similar to yours…. I too turned to oppiates which that road is sooo tireing! Not too mention what it does to your health. Anyway sence I’m on month 11 of being sober… My good days should out wiegh my bad….recently I’ve had to switch primates cuz one told me it was in my now the next days it’s from the opiate use…and now I’m just sensitive too pain!!! Thankfully I have an amazing thyroid Dr and he found high rbc high wbc and high hemoglobin and hemocrit…. So I’m back to the ob gyn hopefully now I’ll have some answers!! I was diagnosed in Jr high with endo but between pregnancy and horomones must be I kept it in ✔…..now my hips and my back they just cripple me with pain!!
I have endo for past 6 years usually the pain has been mild i have done many treatments i had a miscarriage due to endo also had a daughter she is now 1 year and 6 months ever since i had c section the endo has been severe painful at times am not sure if possibly get up hopefully have a hysterectomy soon end the this pain here to those done this with smile everyday i salute used
Thank you. I am going through all of this right now. I am 20 and I am getting my right ovary removed because of endometriosis. It is so painful and all my doctors can do is give me painkillers and those don’t work and they are not healthy. I had to drop out of school because the pain was so much and I couldn’t sit in a classroom. If anyone has any tips to deal with pain please let me know.
Hi all, I am 43 was diagnosed with endometriosis last year in the US as had severe pain in the abdomen and lower back. The doctor then suggested that I shud be on birth control pills and skip periods for every 3 months and see after the 6th month how I feel. As there is no other medicine or surgery that can rule out endometriosis completely even if I do a surgery to get it out it will come back with a revenge.
I did try the BCP for sometime and my pain had reduced considerably had severe bleeding but no pain.
But once I stopped the pills my pain returned. Ialso had 2 cysts in my left ovary. Which keept disappearing and comeing back aft some time.
I have done all test and the doctors are seriously not concerned when you tell them that you have a lot of pain that you cannot even get up and walk properly due to the pain.
It took me almost a month to get my MRI appointment and the gyn would just not bother if you ask her what can be done. They just give a cold nod and say yes you will have to bear some pain.
It is like living in hell with the constant pain and discomfort and no one can understand you my husband keeps telling me to go to the doctor but I meet with the same frustration when the gyn does not come to any conclusion and just keeps asking me to do test after test.
I pray all you ladies get the strength to fight this disease and get your life back xxx
Please see an endocrinologist. Gynac don’t help coz it’s a endocrine issue.
Hi every one 2012 I got pregnant an but I had micarriage. Ever since then I don’t remember saying I’m perfectly fine some days a better than others . Some are worse to an extend that I don’t wanna wake up. I thought i practicaly tried every thing until i has your stories ladies. I hav seen a couple of doctors an all I get is it just a pelvic pain an all they give me pain killers ibuprofen an hyospasmol but still de pain won’t go away instead it gets worseech month especailly around my periods , I hav cried to a point that I would tell God I want to die
So sorry to hear how much pain you are in vinolia.I also was at a point where I felt the pain was just so intence that I didn’t want to live anymore.But thankfull I cried out to Jesus and he lead me to being healed and healed me completely.It’s been over 2 years and I have 0 symptoms of endo as well as other incurable life threatning illnesses.Don’t give up there is hope I know other ladies with endo and adenomosis who have been healed and have been able to go on and have kids even though their chances of getting pregnant were considered laughable by doctors.
So sorry sweetie I started having pains at 15 nd no Dr couldn’t tell me what it was I found a specialist whom suspected endo…problem was I needed surgery to confirm I did have four operations but notion lessens the pain it’s come to down to very strong painkillers nd now wit the dea laws what they’ve I can’t seem to get the script nd this tookbover NY life my marriage is gone I lost my only cold my home nd my job yet still no help it’s frustrating and no matter me except those who suffer from it understand I’m looking for another way to manage pain since the meds r not available any more.
I was trying to get pregnant and finally did then miscarried. It’s been 3 months and I have had excruciating pain since usually when I get my period. Tried to get pregnant again in Jan and nothing. Went to the hospital a few weeks ago since the pain was so bad and doc told me uti. It’s usually only when I have my period and it’s so bad in my abdomen and my bottom :/ found out tonight it might be endometriosis and I’m heart broken. Will I ever get my baby???
My 3 year old daughter is proof it’s possible. I’m so sorry for your loss.
I have severe endometriosis confirmed by two surgeries. We are lucky that medicine has come very far over the last two decades in regards to fertility. I conceived through ivf. There are many other methods as well. They can give you additional hormones to stave off miscarriage. You’ve probably figured some things out since Feb, just thought I’d respond. Good luck!
I have sever symptoms of endomtriosis. Have had it for years. Had many miscarriages and a still birth with twins. I was very jealous of women that got pregnant. I tried to tell myself it will never happen for me, that I will never have a baby. Years later I met my husband and we have a healthy 19 month old now. She is my everything. My endomitriosis symptoms are 24/7. Im fatigue all the time, constipated for weeks, feels like when I d go its knives coming out, I have urinate constantly, headaches, moodiness so bad that I get frustrated bc it makes me mad at myself that I cant control it, sex has always hurt, my periods r horrible when I have them..they like to not come every month. I also have cysts burst. I feel sick to my stomach alot bc I am constipated all the time. I have allergies bc of endo. I dont think my family understands why Im always tired but if you dont have endo then you dont get it. For the ones that think they will never have a baby. I was told I could not get pregnant that I was all dried up. I have a beautiful girl sitting n my lap saying momma and hugging me right now. Miracles happen and my husband and I are huge believers in that bc the doctor still doesnt understand how I got pregnant. There was no drugs used to help me conceive either. Try to relax and believe one day it may happen…… 2016
I have had multiple miscarriages but I can tell you this, I have FOUR healthy boys. Hang in there!
Hi I don’t know if anyone has answered you yet and hopefully you have been told by now by a medical professional atleast. If endometriosis is the cause then yes you can still get pregnant. You will need a laproscopy to confirm its endometriosis and during this procedure depending on the severity of it they can remove it or burn it off. Once healed you should be able to get pregnant. I had endometriosis removed 2 years ago and have been told I can still get pregnant 🙂 hope this helps and hope the same goes for you. Best of luck !! Xx
My aunt was told she wouldn’t be able to have babies, and she kept going to different doctors until one finally helped her. She had gone through 3 miscarriages and almost gave up. But the doctor told her to keep trying and with medications and other treatments she finally got her 2 beautiful children. Even after the pregnancies she still had endo pains and finally decided to get a hysterectomy. But just keep looking for a good doctor who is dedicated to your cause, one that wants to help you, and it will happen.
I was diagnosed with endometriosis when I was 20. I went through the operations and hormone treatments to try reduce the endo- no luck. But I never lost hope. At age 38 I got pregnant naturally.
My advice is don’t focus on the baby. You may have one, you may not. But the baby does not define you as a person. Enjoy your relationship with your partner.
Just as an add-on I have found that cutting sugar and eating very little meat and dairy products really reduces the pain significantly.
Never lose hope.
I feel your pain. I was diagnosed with endo. Had surgery. Doc said my chances of having more kids was slim to none…that was 16 years ago. I had 2 kids before my diagnosis and now have a 14 and 10 year old.. I am going to send you an enormous amount of Love and good thoughts..may you be blessed with a precious one ♡♡♡♡
I’m 17, I haven’t officially been diagnosed with endomitriosis but I’m pretty sure I have it. I constantly have pelvic pain almost like menstral cramps but worse, it doesn’t go away and is very painful. I often feel bloated, I’m so weak and tired all the time. I had to drop out of public school because i took so many days off and am now home schooled. My periods are aweful, and the pain is even worse on my period. No one really seems to understand what I mean when i say I’m in pain, its not like having a cold where you could take a sick day off and be better soon because it’s constant, some days are better then others but I’m always in pain sometimes it hurts too much just to move. I feel like I’m complaining too much. It hurts to do basic things that I used to be able to do which makes me feel lazy or useless even though I’m trying the best I can. My family’s beginning to get frustrated with me, my boyfriend gets upset because sex is often painful and I’m just not up for it. I’ve been to a couple of doctors who all say they cant find anything wrong with me. This so so frustrating I feel like I’m going crazy because the doctors haven’t found anything wrong with me but I know this isn’t normal. i just want it to stop or at least know whats happening to me. I’m sorry this was so long I’m just wondering if anyone else is experiencing what I’m going through.
I am sorry that you have to go through this seemingly alone, just know that you are not alone in this. Do not give up hope that the right doctor will listen and help to get you answers to your questions and validate what you have been feeling and know to be true. I know this is frustrating for a young person to deal with and often leads you to feel isolated. Try to remain positive and proactive in your approach. If you feel like you are complaining too much, you probably aren’t. It took many years to finally have my doctor properly hear me and order additional diagnostic testing and ultimately schedule my laparoscopy which confirmed my endometriosis. I blame myself for not speaking up for and not insisting that more be done sooner. I suffered in silence alot. My family was aware that I had difficult amd heavy periods. My dad is an OB/Gyn yet he did not realize the extent of my suffering until he looked over the reports and saw how invasive the disease had become. The doctor on my case referred to my endo as a ,”peek and shriek,” meaning it was so severe and difficult to work on. He did his best to remove most of the lesions, but had to excise a portion of my right ovary and I was told that my fallopian tubes were obstructed. I was placed on a year long course of lupron. I felt devastated at the time. So many things ran through my mind. The happy outcome for me was the birth of my now 18 month old son, who I was not sure I would ever have. Through the anguish I have experienced happiness and hope realized in the birth of my little boy. I experienced a relatively long period of relief with the lupron treatments. I will say that as more time passes by, I do experience more pain associated with periods and extreme fatigue from time to time. There are side effects that come with the treatment like potential bone density loss, hot flashes & irritability, but it is worthwhile knowing about another option. Other people swear by changes in diet, being diabetic I already have a heavily restricted diet. I don’t if it is an option for you or if you are even open to the idea, but I found massage therapy and acupuncture to be helpful in managing the pain in addition to breathing exercises. I know physical activity can be hard to negotiate depending on the extent and location of your pain, but consider exercises that encourage streching like pilates or yoga. I have also done ballet workouts that were less intense in addition to walking and biking. I have found that spending time in the sauna and steam room to help with relaxation for both mind and body. I hope this is helpful and that you find a good doctor who will care for you and assign the proper treatment.
Hey kyra. I’m sixteen, and I’m kind of going through the same thing. Minus the boyfriend part and sexual intercourse I’m also experiencing pain just like this. It’s all of a sudden and most of the time I try and sleep it off. I’ve cried so many times over it, thinking I have gone crazy. My stomach gets so bloated. I’ve been in the ER for the pain, and I looked like a fool when they didn’t find anything. The only thing they told me was that my stomach was inflamed- they told me not to even worry about it though, that is was normal for peridods. There’s been times when I’ve walked down my highschool hallways and just stopped and leaned against the wall, out of breath with how intense it is. The pain just comes and goes for me. I’ll go from balling my eyes out, wanting to kill my uterus, to wondering what we’ll have for dinner. My mother is starting to get annoyed- she says I have missed to many days, and I’m beginning to think she doesn’t believe me. She tells me that I have to ‘ suck it up ‘ and that she has had worse pain then me. I try to explain to her that it’s different. That it’s a monthly thing, that it ruins my sports activities, that I can’t have a solid conversation with someone without wanting to leave and curl up in a ball. (But I can’t even do that, because its fucking painful) She just doesn’t get it and it’s starting to ruin our relationship. I’m pretty sure my female friends think I’m crazy aswell. I usually get this pain in my anus- just a stabbing type of feeling. They have no clue what i mean and i look like an idiot. I’m happy I found this page though, because just like you I haven’t been diagnosed with it but I’m pretty sure I have it. I just want help. If i need to get my ovaries removed I would, or if I need to jump out of a plane to stop experiencing this pain- I would. I’m pretty sure everyone on this page would.
Please make an appointment with an OBGYN, when you call to make a new patient appointment, ask to see a doctor that is experienced in unknown severe pelvic pain. It is possible for you to have Endo at a young age, it is also possible to have treatment without a hysterectomy. There are many options, but to be officially diagnosed, you need surgery. I highly recommend it, as they can possibly remove some/most of it, to help with the pain. GL!
Hi kyra i experienced the same thing as you except my periods stopped in 7th grade n my doc said i may have endo. Then when i turned 20 they started again sometimes i miss a few but always in constant pain some days better than others. If i was to share my story its EXACTLY as you wrote. Im 28 now and 2 weeks before my 25 bday i went completely bald within days docs had no idea why thankfully it all grew back but it was a hormone issue due to the endo. And i lost alot of weight woth all the same daily pain some days better than others until two years ago right before i started my period i woke up feeling cramps that just kept getting worse and worse to the point i thought there was something seriously wrong not just cramps. Was literally SCREAMING IN PAIN grabbing ky stomach thorwing up uncontrollably nothing stopped it unless i went to the er. The docs had no idea ran every test imagined i dont know how many months that this happened. Now then it only lasted until my period had started. It was like that up until this february. And honestly for a few months it didnt happen but was VERY VERY rare. I tried acupuncture didnt help nothing did trust me tried everything!!! Well its may now and i havent had a period since feb. And in march it happened for 2 days and didnt even get a period just a little spot bleeding which i never have gotten. And then no excrusiating pain until this month. I thought the pain i had before was dying pain no joke literally until last wednesday it happened again and the pain the vomiting the screaming the fevers the whole 9 did not stop for 7 days. I never got a period or spot bleeding and was in the er 2 times thinking tjat there was no waaay it could be the endo being this long….but it was. I don’t mean to alarm you but if you think its what you have gp to a gyno and tell them to test you. I just got diagnosed and i am still waitong to see what my daily and mo thly options are. And praying that i wont have another bad time for awhile. Good luck
You poor thing. You are far too young to be this miserable. My pain started with my first period. I too felt crazy and had to skip many functions because I was in pain, bloated, etc. I just had my second surgery to remove lesions. However, I’m 34 and doctors really were no help until I couldn’t conceive. My best advice is to continue to advocate for yourself. There are hormone therapies that will work for most people. Keeping up with taking ibuprofen and heat packs help too. Hang in there, you’re bound to find someone who will listen. Once you are diagnosed, your family can be educated. From experience, once they do a little reading, they will have some more compassion for you. Hang in there.
I to have the exact problem. I’m 56 years old and was diagnosis with this painful disease. I’m do to have an biopsy soon. I have a strong family history of cancer and two years ago I had a double lumpectomy which came out find but have pre-cancer cells. My doctor wants to see if this disease is pre-cancer cells also. If so she said that I should have a hysterectomy.
I know exactly how you feel. I’ve had endometriosis symptoms since I was 16 years old. ( I am now 23) I took birth control pills for the first 2-3 years but had to stop because there was too high of a risk of blood clots. I am unable to keep a job because of the number of days I miss due to pain. My doctor is not willing to preform a laparascopy on me because she feels it’s too great a risk and there really is no cure. I am stuck to suffer, and occasionally Naproxen (an anti-inflammatory) helps, but it only disrupts my stomach ulcer. So I can’t even take that as often as I’d like. Heating pads (on high heat) help with the menstrual cramps, but not the bouts of inflammation or excrutiating ovulation pain. I wish I could say that things will get better, but I honestly don’t know that they will. At this point in my life, the symptoms seem to be getting worse. I can only be here as someone who knows what you’re going through. Stay strong. xx
22 and you took the words right out my mind. Found out today that I may need another laporoscopy (my second in the past 6 months) so they can take a biopsy they hadn’t done on the first one. Or a shot to stop my ovarian and uterine functions basically temporary premature menopause to see if my body reacts. If it does then I have it and also if the biopsies show microscopic endometrium lining them I have it. Or I did take Naproxen twice a day til menopause in like 30 years.. Crazy huh. Good luck to you.
Hi, I’ve only just read your blog and can totally relate to it. Sorry you’re having such a lousy time but there is hope. My daughter who is 16 is now under a consultant gynaecologist after suffering severe back pain, cramps and heavy bleeding which had caused her to miss a week plus off of school each month, she would literally end up on the floor in the school office due to pain. My daughter is now on the combined pill which she takes for 3 months at a time and also takes tamoxefenac (to reduce the blood flow) when it’s her period. My daughter has just managed to have her first ever period without missing school – she did have some pain but was over the moon to feel normal again. I also have deep infiltrating endometriosis and I’m due to have a hysterectomy in 3 weeks as I suffer terribly with fatigue and severe back pain. Please don’t give up and ask to see a consultant that specialises in endometriosis. Good luck xx
Show your parents this site and insist on seeing a doctor who specializes in endometriosis. If your symptoms are caused by endometriosis and are already so severe, it can very quickly affect your fertility and ability to have children in the future. So sorry to hear that you’re going through this and I pray you get the help and attention you need. XO
I’ve had it since I was 15 they diagnose through laperoscopy.. at 21 I had my left ovary removed in a week I go in to be scraped in hopes of removing some of the disease that is there and avoid a full hyst.. I am 26 now and my previous doc wanted to do the full hyst. But I refuse! I want one more baby before my body is 100% ruined!! I am one of the lucky few who have conceived but I’d give anything for 1 more child! Please get to a gyno who is willing to look so you can get treatment right away!!
Kyra, I didn’t notice any responses to you… and I know this is kind of an old post but I wanted to reach out to you anyway. I have been dealing with Endometriosis since since I was 13-14, basically shortly after my period started. My periods were heavy and lasted longer than they should. I always had lower back pain too.
I went on BC pills at 15 and that helped regulate but the pain remained.
The only way a doctor can for sure diagnose endo is with a laparascopy. It’s an outpatient surgery where they go in with a scope to look around, and they remove endo tissue if they find any.
I have found the only med that helps during my period is Pamprin Max, seriously.. the only one. Make sure you are getting your vitamins in, that will help with energy a bit.
Keep up with the doctors. It took until I was 27 to get a doctor to take me seriously and do a laparascopy.
I went through almost the exact same thing, have you mentioned to you dr that that is what you think you have, when i was 17 i went through a few drs. Because they didnt understand one told me that “sometimes women just get pain” it made me feel horrible and i started to question if it was all in my head. Finally i found the right dr whos taking it serious and at 21 now i have tried a few different medications with no sucess, the next step is surgery.
Don’t give up girl! I know exactly how frustrating it can be – and when you are young it is hard to get people to pay attention to you. But you are exactly right – what you are going through IS NOT normal. I had pretty much the exact thing happen to me, and when I was diagnosed, it was hard for me to get proper treatment. Don’t accept what the doctors say, keep pushing! And be rude, and be persistant, and remember that there is another lady who has gone through the same thing. I have been through two surgeries, gone through 10+ birth control/hormone treatments, taken every pill in the book – and I am just turning 25 next month. I finally have found a wonderful doctor who is listening to me, we are finally making progress. So don’t give up and don’t be silent. It’s a common problem for women, and yet I had never heard of it until I was diagnosed. I’m rooting for you, stay positive! It does get better!
You sound exactly like I did at your age. I’m 25, diagnosed stage 4 when I was 16. You are not alone.
Im going thru the same thing now.nobody understands,not my family and not my boyfriend.my boyfriend does not even try to.the fatigue is terrible..im now anemic from bleeding so much that is making the fatigue so much worse…its a neverending battle
Hey u been check for endo in specifically?
Im 20 years old and had been suffering exactly as you described up until this year. I was getting letters due to my lack of school attendance, was constantly in the doctors from severe back and stomach pain and suffered from weight loss due to the frequent vomiting from being in so much pain. Often i would show symptoms of water infections but no infection was prevent and sex would occassionally be excruciating for me. The doctors told me i was perfectly healthy and according to tests I was, however after years (since 13) of going back to the hospital and doctors repeatedly. Having a cystoscopy, numerous blood tests,being misdiagnosed (IBS and interstitial cystitis) and medications i was referred to the hospital once more for a laproscopy which showed endometrial blisters where there shouldnt be.
It is incredibly tiring and saddening to have to go through so much effort to get your diagnosis as I did mine, but I promise you if you push hard enough with your GP surgery they will follow it up until they find what is wrong. If you are almost certain it is endo I would ask for a laproscopy as they found my endo straight away from that after years of deliberating between doctors, nurses and surgeons.
Get a laparoscopy done ASAP! Then the doctors will find what is going on inside you. Don’t take no for an answer. If one doc won’t help, find another. See a Gynocologist too…that a must. At least they will know what to do look for. Good luck, be strong and be persistent cuz it’s your body and you are in a prison because of it.
They really can’t diagnose endometreosis without doing a laparascopy. Ask your ob/gynecologist for a laparascopy to investigate possible endometriosis.
Hang in there!!! Don’t give up on finding a diagnosis. I have been having similar problems, not constant pain but pretty close to it. Heavy bleeding during my cycle, clots and pain so bad it hurts to sit down. I was just referred to a gynecologist and was given pills that I just started taking. The only way to confirm endometriosis is through a small surgery. I also feel tired and weak and its very hard to take care of my two year old at certain times. It seemed to have started after I had him and my abdomen seems swollen on one side and its really painful to touch. Ive been for 2 pelvic and abdominal ultrasounds in the past year and they haven’t seen anything. I am convinced its endometriosis also, and yes i know what you mean about the sex issue, my husband is also growing impatient as i never feel like I can and it hurts more then feels good. I will be 30 in a month or so 🙁
The only way they will know if u have it is to go in u’r lower abdominal with cam and look around! Hope u get the help u need god bless! I have endo and it sucks so I fill u
I am a Nurse that is 40 years old. Diagnosed with Endo 10 years ago, had a TBA that took away my periods. In last 2 years life has changed and in last 6 months Drastically changed. Can’t have alcohol, caffeine, or sexual intercourse. My nagging everyday lower back pain is immense!! I am scheduled for a Hyster on 3/18, teriffied my pain will still be there! Thanks for this article & may responses, I now know I am not NUTS!!
Did the surgery help? Im in the same boat. I have stage 4 endo & need hyst & likely bowel recision. I’m 37, but I’ve needed this since I was in my mid 20’s. Obviously I’m terrified & afraid the pain will still be there.
I am in the exact same boat….did the hysto help???? I’m 38 and on the fence when or if to have the surgery!
Hi. I’d love to hear how the hysto went. I’m going for a ultrasound tomorrow and I have a feeling I’m only at the beginning of tests. I’m finished birthing children, other health concerns. If it’s what it takes I’m seriously considering it.
Can someone PLEASE do a study relating “evening primrose oil” and endo! I have had endo since middle school, the pain was so severe I would scream in pain and often throw up every month. I tried everything, even t3s AF naproxen didn’t stop the pain. A co-worker 6 months ago recommended evening primrose oil (after I missed a lot of work from endo).. Since I started taking the oil I have had NO SYMPTOMS, NO PAIN. All from an over the counter plant oil in pill form. Please do a study on this! It may help other women like me!! It seriously changed my life, job, and relationships. Thanks.
Thanks for that info. I had a hysterectomy a year ago at 42 after painful periods all of my life. Despite textbook symptoms and telling them that my sister had been diagnosed with endo, they failed to diagnose it. During hysterectomy they found that one ovary was completely encased in endometriosis and that I had a 4cm fibroid and adenomyosis. A month after the op I had period pains. When I spoke to a nurse she told me that a hysterectomy wouldn’t cure endometriosis. I think I knew it, but couldn’t face the awful realisation that I had needlessly had a major operation. After 10 months the pain was becoming unbearable until just after Christmas, I started losing blood. This was really scary as it shouldn’t be possible and I was shocked that I still hadn’t healed properly. After the bleed I felt much better, with more energy and no pain. After 4 weeks the pain returned. Some days are awful, but the nights are unbearable even tramadol and codeine don’t touch it. I feel so upset as I feel that most of this is in my head. I wouldn’t wish this on my worst enemy, but it has helped to read your accounts and know that I am not alone and not being a wimp or going mad. This condition is very real. Thanks for sharing.
I too suffered from the onset of my period for decades! Stage 4 , infertility, a dozen surgeries including bowel resectioning, various narcotics and multiple meds to induce menopause with no relief. FINALLY I swore off conventional medicine and their apparent glee to make me a slave to pharmaceutical companies and not cure me, but cut me open any time my insurance would pay. I went to an alternative doctor, was given 2 supplements, including Chaste and Squavine and I am nearly symptom free. I would cry over the years ruined and robbed by this disease if I wasn’t just so happy to have it finally managed. One of my daughters is showing signs of endo. She will have an entirely different experience than I did, so I’m thankful I learned the hard way so she will be spared!
How much did you take? My girlfriend has been crippled 24.7 for almost a year now, cant work and is bleeding a huge amount. So worried about her, thank you
Hi ya Iam suffer too I have had enough of been in totally pain 24/7 it feels like it taking over my life at the min it’s cause problems in my relentionship I have had it for three years too long feel like Iam losing the plot at times just wish they could find a cure for it
Hi. I am Jes. I have been suffering with horrific pain since I was 14. When I was 24 I was rushed to the hospital for unbearable abdominal pain. Which turned into a ruptured cyst on my ovary. My doctor gladly took me into surgery to find out my entire abdomen area was engulfed in scar tissue. I say it looks like the Michelin man. But you get the point. I have had 4 surgeries since. One was a microscopic lazer surgery where they ended up nicking my bladder. Yay me. But that’s a back story. I ended up on strong hormone medication which I stopped a year ago to try and conceive. No luck. I am getting married in 12 days and I have been bed ridden in pain. Swollen and looking as if I am pregnant. Can’t hold it together to move from one room to the next. Yes I know stress can lead to inflammation which irritates the endometriosis. But what do I do from here. I don’t even know if I will make it through my own wedding. Help
Hi my name is Bonnie and i haave had endometriosis ever since i started my cycle in sixth grade. I am 32 now and have unbelievable pain with every period. I have had laparoscopic surgery and was told i have endometriosis about 8 years ago. They could not do lazer removal because the endometriosis was on my intestines. I did the hormone therapy and it worked but it also had negative side effects which caused me to stop treatment. Since then my endometriosis has come back with a vengeance and im in constant nauseating pain every time i have my cycle. Also my cycles have decided to stop showing up when they should which has happened in the past. I need to see a doctor about this but i cannot afford to and i mean really cannot afford it. Can anyone help? Thanks for your time and consideration.
I have been in excruciating pain (on and off) since I was 15 I am now 26 the pain has been gradually getting worse as I have got older. I’ve been in and out of gynecologist’s, hospitals, GP surgerys I have had a numerous amount of scans (inside and outside), pregnancy tests all negative and even a smear and all of them came back clear. Back in december 2014 I thought I finally thought that I would have a diagnosis the hospital booked me in to have a laparoscopy, after the surgery they told me that this was failed and the only thing they can advise me was to take painkillers (but none of them seem to help me cope with the pain) and continue to keep taking my pill daily to try and stop my periods (which hasn’t worked) since December 2014 after the failed surgery the pain seemed to have subsided untill the pain worsened recently this month I decided I wanted to change doctors as I thought that I would be able to get them to investigate this matter further since 07th March I have been trying to book an appointment with them to no avail. The pain has been persistantg since the 07th March so yesterday after work I decided to go into the walk in centre after taking to the doctor who could only provide me with pain medication decided to perscribe me with 50mg of tramadol which I have just started taking today they said to continue taking this untill I can arrange to see my doctor, this pain has been going on to long now and I just want the pain to stop. Any advise that you would be able to give me at all? Much appreciated.
Hi inwas diagnosed with endometriosis at the age of 18. I have always had severe period pain and would sometimes vomit acid. When i went to the doctors they would tell me it’s normal to have period pain. O would sleep for 3 days straight and not go to school eat or drink anything. I had no energy in me. I am now 21 and i have had 3 laparoscopic surgies in less then a year. I had pain during intercourse and my marriage is very rocky at the moment because of all the endometriosis. Im still living in pain even though im drinking contriseptive pills. We have been trying to have kids for 4 years and never worked. I wish everyone the best and i wish no one had to go through this.
I was just diagnosed with endo about three weeks ago after years of horrid cramps and ongoing PMS. The worst part is I just experienced breakthrough bleeding and the pain makes my skin feel like I have the flu. I don’t want to be touched and just want to cry because I hate my body for doing this to me. I’m bloating in all these places and I feel like I’ll never get better. I’ve had my period since I was 11 so it’s been almost 22 years of this agony. When does the pain stop? Will my body adjust to the meds and feel better? I can’t live this way forever and I just hope there’s light at the end of the tunnel!
This is a breath of fresh air!!
I see similar sentences.. ” am I crazy, am I nuts”? I went into A and E after battling for several months with server pain. Couldn’t get relief from sitting, Standing or walking it off. So, went to A and E…hubby couldn’t watch me struggle any more. I am some what stubborn. The A and E doctor said possible IBS and cognative. ie, in your head!! Right so I am crazy. I kept running my business, dealing with staff, being a mother and step mother, a wife, friend and all the normal roles us women play. I changed my diet, I tried to spread my workload out. Took regular hourly walks, sometimes even TRIED a slow jog. PAIN lots of PAIN. Sod it I will go and see a councillor talk about issues… not that I have many. Great kids with normal worries, Hubby who is supportive. Good circle of friends and family. Business ticking over nicely. Still I went. After 3 meetings I began to feel low…hang on aren’t I supposed to feel lighter?? Then the pain started to worsen. Hubby called GP and I was seen within the hour… Constipation. Given strong laxatives, told to change my diet and eat everything I was eating. So explained. The GP rushed a Sigmoidoscopy. Appointment arrived and I went. The sigmoidoscopy was stopped due to causing more pain. Told “we need to put you under we are refering you to a colonoscopyst/Bowel surgeon. Met the bowel surgeon who started asking about my periods and female family history. Explained painful cycles all the time, gone from flooding to vile discharge that wont go away and always constipated with a dash of diarrhoea before period was due, but pain always there, just varies in strength with cycle stage… “Endometriosis”…sorry what? I had never heard of it. So went to see the female GP at our surgery who fits coils and knows all about lady health issues. Again explained…”Endometriosis”, again this word. I’m sending you to see my husband in Winchester who specialises in Endometriosis. (Head in a spin now). So, meet with him and froze. I had it in my head that I was crazy, even my councillor said this could be pyschosomatic, (I told the councillor what was going on).
My consultant then explained Endo to me in detail. He told me that it can affect the bowels, back, bladder and many other things. Suspected something was pushing against my bowel rather than in my bowel. Booked me in for laparoscopy… 2 weeks from consultation. The night before my operation the pain had me on my hands and knees rocking. I refused to cry as in a matter of hours I was to have the op. I arrived and met with my consultant/surgeon one of the same person. He then prepared me in case they didn’t find any Endo, but if that was the case, he had other options to get me pain free… Okay you seem a fair kind man, I will go with what he siad.
Off I went for my op, I went down at 7.45am, I came round at 11.45am wow did I come round… ah yes Operation thats why I am in agony. I woke at around 11am, but the pain med’s needed controlling the pain wasn’t under control. It wasn’t until the recovery nurse explained that they had been trying different pain relief to get me stable, think I frightened them a little.
I ate and drank, went to the loo and was walking pain free. I was as high as a kite, not pain free.
My husband and I saw my surgeon and this is what he said…
“this isn’t the worst case of Endo we have seen…It’s the most server case we’ve seen” Sorry what? Case? Server? Then my husband translated.
“Darling they found Endo everywhere!! It was really deep, they had to work on you for a long time. Cutting, burning and some other thing I can’t remember. They are using you as a case study!! Are you happy with that”… er YES!!
“Also, it was all over your rectum internally (ie in the abdominal cavity behind my womb) they also found 2 fibroids with stalks on the back of your womb and fibroids in your womb”. Hubby’s face said it all. Poor thing had to repeat it again 2 days later once all drugs were out of my system.
I was let home and given constipation makers…opium!! within 3 days I was readmitted with a compacted bowel. Laxatives both ends and controlled morphine. I was let out after 2 days with good bowel movement.
This was 4 weeks ago. I’m still in pain, but my consultant wants me in, this coming Thursday as he’s not happy. I avoid opium at all costs, sometimes I will take over the counter ibuprofen with codine as its a small amount, but I am on stool softeners 3 x a day and senna. Sleeping tablets as can not sleep, even though I’m shattered. I’m still going for walks and resting, then moving again. I take my time with everything and have sold my business. I am lucky to have the consultant I have, but I wanted to write because I have seen many uneducated medical professionals, been told I was crazy, pushed myself beyond my own limits and never given in. I know me, I know my strengths and weakness. I also know I was uneducated and I am still learning about this debilitating disease. My body has changed, my skin and hair have changed. Yet my determination is firmer than ever. Keep researching and believing in you. We are NOT machines we are biological, we are emotional and we are all worthy of living a healthy pain free life. Post on social media, spread awareness, talk to people and educate them. One Day at One time, or even One hour at one time. I wish all who read this love and light and most of all I hope you find strength to put you first. My husband put me first, now I am learning to do just that. My journey isn’t over, but I know I am finally on the right path. Look up specialist in your area. I was lucky to have a GP who’s husband is a specialist and works in a specialist unit. They are out there. This site is even specialist. best of luck to all x
Wow! This resonates so deeply with me. My story is so similar to yours. Thank you for, so eloquently, sharing your journey and thoughts. This gives me hope.
I am going in on June 14 for a Cystoscopy, to remove polyps, and to check if i have endomitriosis. I’m pretty sure I do because of my symptoms and so does my gyno. I’m nervous a bit. I just can’t wait to NOT be tired and in pain anymore! I feel my family and friends don’t fully understand what I’ve been going threw. Thank you for this!!
Hi. I’m 27 years old. I have 2 children and ever since i had my son in 2013, on the day before my period I have lots of pressure in my cervical/pelvic area. The first day of my period I have bad pains and it lasts for about the first 2-3 days then starts to ease up. Well this time on the first day of my period I was doubled over, crying, in SEVERE pain. Tons of pressure in my cervical/pelvic area and my bottom. It hurts to sit or try to use the bathroom. I am nauseated for days. Vomiting if i move too much. The only way I can describe the pain and pressure is when I was at the end of my pregnancies and the pressure from my baby pressing down on my cervix. But the pain is so so so so much worse. I’m going to my obgyn this week and I’ve looked up all my symptoms and Endo is the number 1 diagnosis on multiple sites.
Any ideas i could possibly have endo?
I was diagnosed with ovarian cysts when I was just 13. I’ve always had extremely heavy ( sometimes when I get ready to shower from the time it takes me to undress and get in, there’s blood all over the floor . Just like a murder scene. ) The pain is extreme every month. I would miss school when I was younger, and I miss work. I was put on light duty and my hours at work have been cut upon my request. I have been having allot more pain these last few months. I had a huge cyst on my left ovary that was so big they were going to operate, but it burst before they could. I went to the hospital in an ambulance when it happened. I was in so much pain I thought I was going to pass out. When I got there they gave me morphine and told me it probably burst but didn’t check to make sure. Ever since then, the pain still remains in the left and right side. It goes into my back and down into my knees. I was put on depo to stop my period. It didn’t work. I ended up bleeding for two weeks with horrible cramps. Then, I passed a huge “blood clot” it looked and felt like actual tissue. Like a small organ or something. It was the size of my palm. I went back to the hospital they ran tests on it, the test say that it was “just blood ” I have pictures of this thing, there is no way it’s just a blood clot. I also bloat so bad every day it looks like Im five months pregnant. It’s very uncomfortable. Now, after three months of waiting my gynecologist appointment is on may fourth. I can barely even have sex. The pain is almost always there. Even as we speak. My period is extremly late. Two negitive pregnancy tests, no period and still extreme pain and cramping. I’m always tired and nauseous. My boyfriend that I live with, keeps telling me to stop being a baby. It’s all just stressing me out so much. I just want this all to end. Heres to hoping for some type of diagnosis soon so I can be treated.
Good luck to all of you strong women out there!
Hi everyone, I’m Shay (well that’s not my real name I don’t want to give it.) In June of 2015 I had a very painful period. It was so painful I had to rely on aspirin and a heating pad. I couldn’t wait for it to stop…but there was one problem..it didn’t. My period continued for a whole other week and I was terrified considering that my period had always been normal up until this point. It felt very nice when it finally went away after 2 weeks. But I felt devastated a week later when it came back. It was horrible and I would find myself crying and holding back tears for absolutely no reason at all. Went to the gyno and found out I had a cyst on my right ovary and they decided to watch it. My periods continued to be horrible until I got to the point where I became used to it and just put up with it because I had to. I continued checking on the cyst, and it went from 3 cm to 7-8 cm in just a couple months. That’s when they decided to do a laparoscopy to see what was wrong. It turned out to be endometriosis. Surgeon scraped it all off and luckily I got to keep my ovary. Right now, I’m on birth control. My first period after the surgery was ok, but this last one was nuts. I’m still getting used to it hopefully it will get better as time goes on. Very interesting stories, I like this page and I’m glad that I have a chance to read stories of others who have gone through something similar.
I had an early miscarriage in March 2015. I have been in pain since. I kept going back to the doctors to be told it wasn’t gyno related and did god knows how many blood tests and about seven ultrasounds.
The pain was 24/7 and got severely worse with any exercise (I LOVE exercise!). I would describe it to the doctors as ‘an angry tennis ball where my left ovary should be’… exercise turned it into a grapefruit.
No, no, no. It’s your kidney’s, it’s this, it’s that. Surprise: all perfect.
I was finally sent to a gyno after another miscarriage (we live in remote bush and only have one gyno visit every three weeks) and he said I needed a lapop. Finally someone taking me seriously!
I was under for two hours and when I came around the gyno said ‘we found endometriosis, but it’s not enough to be causing you your problems. Next time you’re in pain, try some buscopan.’ He patted me on the knee and left.
I went to a follow-up the next week with my GP, she asked if he had told me where the endo was. He hadn’t. It was at my left ovary.
I gave them permission pre-surgery to remove one side of my reproductive bits if necessary; I have a spare set.
I have a follow-up with the gyno in one-week and I am angry. I am so angry at being treated like an idiot even though it turned out I was 100% right the whole time and the doctors were wrong. I’ve been so angry but only been able to cry in my impotence to do anything.
This article describe endometriosis perfectly. I am chronically in pain and chronically fatigued. I can no longer fully function looking after my family, our animals, and working full-time too. I want my life and my body back.
Hey, I’m 16 as of now and I’m struggling with a severe pain in my pelvic area. It almost feels like it’s not in my abdominal but more like it’s deep rooted and the bones are shifting.
I get sharp, quick, pains like I’m being shot.
I have a strong tolerance for pain due to the fact I was diagnosed with arthritis and I thought this was normal.
But around my menstrual cycle, anytime I use the restroom, stay sitting for too long, the pain gets so much worse, and I OCCASIONALLY feel it in class when I get out of those horrible chairs, and I have to not look so weird when I get up and I’m in severe pain..
I’ve never left school because of it, but I thought these were normal pains, but I looked it up anyhow and I found this?
I’m super afraid and I’m going to talk to my mother about it,
but can anyone help me through the fact I have to see a gynecologist?
I’m terrified of possibly having this or even not getting and answer and be turned away?
What if it’s something really bad?
I don’t want to be infertile?
I found out about this and started to cry while feeling a small sharp pain.
Somethings so wrong
I’m 21 and have been on the pill for 5 years and I only started to get severe
Cramping 1 year ago. I went to the doctors about my pain and irregular bleeding, I would have non stop spotting/bleeding for months before it would stop and I would be in the worse pain where I would cry in a ball and wait for it to pass. I went to the doctors and I told them what was happening and I did a pee test and it came back I had a UTI? I’ve had multiple UTI’s and never have the symptoms been cramps. I was pescribed antibiotics and that was that. I then just dealt with the pain for a bit until I was talking to people and they said that wasn’t normal. I did some research and spoke to my mum and she’s suggested I might have endometriosis. I then went back to the doctors to discuss these possibilities and I got the response that the pill is suppose to manage it and you’re young anyways you don’t want baby’s yet…. that made me very angry and frustrated that no one was willing to help me. I the saw another doctor who actually sympathised with me and was willing to help. She referred me to a gyno and also prescribed me ponstan which is a great medicine to help with the pain it takes a bit to kick in but it definitely reduces the pain. I just had my gyno appointment and we discussed my options, and of course surgery is the only way to detect endometriosis but going through the public health system there is a wait list. We discussed that the mirena would help me with the pain because it stops you from getting your period and having your period makes your endometriosis worse. So I had the merina put in and It was definitely not a pleasant experience and I was in more pain then the cramps I was experiencing but I’m just thinking about long term, these pains last for a day and then they have started to settle. I would recommend looking into these options to reduce your pain and to prevent the endometriosis progressing and getting worse.
I have stage iv endo, had a laparoscopy in 2009 to remove endo, did 4 cycles of IVF to have have my twins, now in 2016 I went to have a hysterectomy, via da Vinci lap but surgery became diagnostic only because I have too many adhesions. Uterus, overies, urethra, bowels, intestines are all stuck together. Endo on my liver and diaphragm, and I have thoracic endometriosis. I was told to do Lupron, high dose once every three months for a year, then bcp or mirena, and the gyn can’t even discuss surgery yet since it’s too risky. Would need a specialist to sew up the bowels, oncological gynecologist, and regular gynecologist all present to attempt the surgery, and even then it may not be worthwhile since the scar tissue can cause further damage. Am currently seeing a cardiologist for the chest pain but i believe it is all to do with the endo and not heart disease, but given the higher risk of heart disease with endo, my gynac thought it would be a good idea. I was told I am a rare case, but seems like there’s just no winning with endo. Anyone else dealt with thoracic endo? Any advice or second opinion?
Lupron is used once a month for 6 months. I find it strange that your doctor what suggest 1x every 3 months. It’s used to put your body into a perceived menopause. Because the endometriosis feeds from the estrogen produced by your ovaries, it shrivels up and dies. Sounds like you either need to clarify this with your doctor or find a new doctor.
I have one shot every 3 months as well. My gyno said this was the better way to go, because by the time the awful side effects start to dissapate, you have to get another shot again. So you go through that cycle every month for 6 months. No thanks. I can have the shot every 3 months for a year or 2. It’s better this way for me, but not everyone. 🙂
I’m right there with you sweetie. I started having heavy periods in my early 30’s when I went off the pill to see if I could have a baby. After years of trying and having the most God awful periods that would keep me in bed for days, I had a Pap smear come back that was abnormal. It turned out to be pre-cancerous cells so I had to have an ablation and DnC done. After that procedure, the painful periods continued until I was taking too many days off work. I had another test done and they found that I had adenomyosis. I opted for a hysterectomy because I couldn’t take the pain anymore and the heavy bleeding weekly. Once they opened me up, they found endo everywhere. She was able to save my ovaries but I wish she would have taken them. She wasn’t able to get all of the endo. That was 2 years ago. The severe pain is back ten fold and it’s everyday. It’s debilitating. I am thinking it has now spread to my rectum because I am bleeding even when I sit down to urinate.
I had my first shot of Lupron in February of this year. The side effects were almost as bad as the endo. And took about a month to die down. It really helped though. Didn’t take the pain all away but did help for the most part. I was scared to get the second shot after 3 months because of the damn side effects and waited too long, and the endo has come back worse this time. I just had my second shot of Lupron this week and am praying that it helps. I have an appt with my gyno next month, and I think I’m going to ask to have surgery again to see if they can take it out. I know that I’m going to need a colon surgeon this time around as well as an endo specialtist assist with this surgery and I’m scared to death. My gyno said this second surgery is very risky and I could and complications. At this point, I don’t care anymore. I just want to feel better and not have to subject my body to more pain pills, Lupron shots and BCP!! I feel your pain so much!! Please know that you are not alone!!! Take care!!!
Hi everyone. I’m 24 years old and have had endometriosis since I was about 11 years old, I was daigknlsed last year and had laproscopic surgery and it went away for a couple of months but not its back. the way my symptoms happen is very interesting, for example my endometriosis pain only lasts for one day and it’s only for 2 hours max and it’s always the first day of my period (I guess I’m lucky considering some people have it for days). And this pain only occurs if I get my period in the morning. If I I get it at night or mid day I have very very minimal and tolerable cramps. But if I wake up from it, it’s HELL!!! I can’t move, I get the chills and then followed by sweat, I’m nauseous and constipated. But since I’m on an empty stomach I can’t vomit, so I gag myself and that gagging feeling somehow relieves the pain but only for a couple of seconds, and I keep doing that until it completely goes away. And this is the only thing that helps me, no medication, not even surgery helped. But it’s ridiculous I’m damaging my throat by gagging myself like this and the pain is SOO awful, I’m sure you ladies understand. I also find it interesting that it has this routine of only morning periods. By the way I have always had irregular periods my whole life, never have I had my period on the same day as the month before.
Hay I am 16 and in high school as a junior when school starts again, I live with my grandparents and my mom. I was diagnosed with endo when I was 15, I spend so much time in bed unable to do anything but cry and hold on to my heating pad. My mom and grandparents thought I was faking all the pain I was in, it took almost two years for a doctor I was sent to decided that I was in to much pain for just cysts that I was having and when he heard my mom and nana both had endo he threw his hands in the air and said “you could of mentioned that sooner” so he scheduled my for a laparoscopic surgery the Thursday after the next. And after the surgery I was diagnosed with endo, my doctor said I had about 40% -50% of my uterus was covered. It took about 2 weeks before I could go back to school as partial days and it took about a month and a half before I could ride my horse, I wanted to cry because I love riding. And I still have days where I have to stay home from school, miss riding lessons, and even not even go out and feed my horse.
I’m 16 and have just been diagnosed and I didn’t really know much about it but this has helped me so much! Thank you!
When I was highschool I had the worse menstrual pain and everyone my family and friends and even doctors told me that it was normal. I had to go to the emergency twice because of the excruciating pain that last for several hrs because normal panadol won’t work on me anymore. When my menstration came, it usually last for 3 days of continuous pain . I have to leave school then leave work because of the pain. The doctors have to inject a strong pain reliever for the pain to actually go away. Everyone says I’m over reacting and my own sister told me that I have low tolerance towards pain. My friends could not understand my pain that I stop eating sour foods that could trigger the pain.
As I am turning 35 now, I began to have severe pms. Headaches , abdominal cramps , backpain , severe tirdness. It starts with one week of pain then it became two weeks of pain. Now I have pelvis pain everyday.
I went to 4 different doctors. First one put me on birthcontrol but still the pain is there so I went to another one. 2nd one told me I avoid coffe and chocolates and gave me a strong pain reliever so that I don’t have to go to the emergency room if panadol stops working. Third one told me that I might have polycystic ovary and put me on metformin . Fourth one was the one who actually told me that I have endometriosis. A disease I never herd of. After ultrasound , it was confirmed that my pain is actually legit and not something everyone thinks I over-react from. I was put on Visanne but my pain is still here. The annoying thing is that the pain is here 24/7 . It is not excruciating pain but I feel the pressure on my left and right ovary and back pain.
I too have had at least a dozen emergency room visits because of horrible excruciating abdominal pain. Recently to be told that I have cysts on my ovaries but never was I told that I had an option to have them removed. Tomorrow is my first diagnostic laparoscopy. this article is the first that I have found to be true and explaining how much we go through on a day-to-day basis. Hopefully tomorrow goes well and they are able to finally diagnosed me 100% with endometriosis. My biggest fear is becoming infertile I am a 26 year old female who wants nothing more than to have a child. I hope this article helps other women and some of the comments give advice so that us as a whole can keep Trekking.
Good lucky in your surgery, I was diagnosed with endometrisosis when I was 16, and I had my first surgery at the age of 22. The pain was ok to deal with, but after 3 years the pain came back making crazy. The pain was all over in my legs, back, arms, pelvis and all this symptoms that I was pregnant like nauseous and more. I went for a 2 surgery and the doctor told me that they could not remove all the endometriosis, because it was too much. Now I have been trying many things like eating healthy and Organic. I started hot yoga and it helps me to manage the pain a lot. Now I am 29 and decided to that I want a baby. I hope I can get pregnant anytime soon. If you are diagnose with endo don’t way too much to try to have a baby. My prayers are with you.
Don’t worry hon I have had history of endometriosis and yes it does make it harder to conceive but you still can. I have a healthy beautiful boy. And I did not have to recieve fertility treatments. The power of prayer is amazing. I will keep you in my prayers
Can A Strong Core Reduce… Even Eliminate Your Joint Pain?
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Hi I feel all you guys pain I’ve had endo for a few years now and the pain is so bad I almost rather died. I came on this site to see if anyone was going thru what i was going thru. God bless all of you this disease is very serious and painful!
I feel your pain literally. Dying seems better than constant pain. Mine is constant and moves all over my abs around my back and pelvic. Had a lot of tests and other procedures done before getting surgery today and being told I had it. No body parts removed. Not sure how bad it was because doctor had to leave before I woke. I hope this does the trick and I’m not back to square one with undiagnosed pain.
I had surgery to remove mine a couple years ago, the became crippling. The pain cam back 6 months ago and slowly but surely I’m back now in crippled pain. It came back… I pray your doc got all of yours.
I am, extreamr pain for Days its just ….has gotten worse after surgery that. Exaustedand tired causing my happiness to fade. I want to be a happy person so i just keep telling nyself it will be better one day
Hi I’m jeniffer I have had those days where I felt like dying because I was in so much pain I had went to my doctor’s to get medicine for the pain went to the emergency room to get medicine I got red flagged because of going to so many different doctors for meds there where day some times weeks I was suffering I was miserable I had surgery they told me they didn’t see anything so when I was in so much pain I went to my primary doctor and I told him I’m in so much pain you don’t understand how I’m feeling I’m in tires.
He is looking in his tablet then tells me did you know that you have endometriosis I was in shock had no clue what it was my obgyn never called to tell me .I had the surgery December 19,2016 .and didn’t find anything out till April .
I am a woman in her 50’s and I have had endometriosis for over 20 years. After seeing many doctors and being told to take medication, I opted to go the natural approach. In my earlier years, I saw an herbalist and was treated with acupuncture for years which helped quite a bit. I also changed my diet which included removing diary and caffeine products which also seemed to help. I was pain free for almost 10 years.
I am no doctor but doing the above helped me and maybe it can help someone else. Recently, the pain has returned and I’m going to begin acupuncture sessions again. . Good luck to everyone as I feel your pain
I am quite disappointed reading about all the women suffering from this disease. Its a pity how their physicians were not really able to offer much help to most of them. I am a 43 yrs old woman suffering from endometriosis for more than 25 yrs. Had a surgery back in 98 to remove a cyst from my left ovary which quickly came back within a couple of years. I have had cysts in my both ovaries and fibroids in my uterus. I have been managing my endo pain with Brufin. that s the only thing works for my pain.
Now, I am when I was about to treat my fibroids which are causing very heavy bleeding, I was told by the doctor that I should first worry about my endometriosis because it could become cancer. I was quite shocked at this as in the past 25 yrs I had seen at least 20 doctors for infertility or endometriosis and not even one of them had ever said anything about it could becoming a cancer. And now after this ob/gyn telling me this when I checked the net, it seems its filled with this kind of information that endometriosis could become cancer.
Now I am so nervous that when I am operated for it they might find malignancy there, although my c125 and other blood tests n ultra sound results are negative for that. What is your opinion about it?
Am I really at a high risk for ovarian or other cancers?
I live in Pakistan.
I’m from Russia. I have endometriosis stage 4. After the laparoscopy the pain intensified and spread throughout the body. Doctors say treat hormonal drugs, but they don’t help. Is it true that no one can cure it?I can’t work with such pain and continued fever. Please, give an advice how to reduce this pain.
I’m home from a 5 hour ER visit for endo pain. After telling the DR that I have four fibroids, and three ovarian cysts, that a laparoscopic surgery performed last month to cutout and burn some away wasn’t so successful because the endo spread to cover both ovaries, to attach itself to the bladder, the intestines and the appendix, he told me I’m simply constipated and about to start my cycle. He then prescribed anxiety medicine and sent me home! How is that right? How is endo which has twisted and tipped my uterus related to constipation and anxiety?
I am just now learning about what my experiences over the last 3 years truly meant. I have endo pain 24/7!
This disease is incredibly life changing and I’m struggling with how to move forward and not lose my quality of life. It saddens me that the medical community under treats, misdiagnosis this mentally and physically disease.
I hope you all stay strong and find support.
I am so sorry you are going through this pain. I’m also an endo sister. I have found relief with tumeric, omega 3 and real bone broth. I have also tried massages every month and that helps also. I hope you can find relief.
I too am an endo sister since I was 25. I’m now 46 and have had a hysterectomy but the endo has come back full force again. Do you take tumeric capsules once a day? Same with omega 3? I will try anything to ease the cramping and pain. Thank you for any help you can give!!!
Did you have your ovaries removed?
I am 20 years old and have been dealing with this for several years. It can be so very difficult to maintain a positive and healthy lifestyle and emotional state with endometriosis, especially on the days where my pain is most severe. As far as pain management goes, I find that regular gentle yoga eases the pain overall but unfortunately not by much. What helps me stay positive is knowing that there are so many other amazing women dealing with the same issues that I am and even if no one in my immediate circle understands me fully, I know that I am not actually alone in my struggling. I am so sorry to hear that you have had such a hard time with this condition but if your doctor has a plan stay hopeful and know that he/she probably knows what’s best! Just don’t forget to remind yourself that there are so many other ladies out there just like you that are struggling and that you are not alone in your heartache. Things will get better and I know it’s hard to see it but I think it is so very smart to look for comfort in a site like this where everyone understands what you are going through. I wish you nothing but the best and I hope that you are able to continue in your courage and eventually find an effective solution to this problem 🙂
Yes I experience a lot of nausea. Mostly dry heaves, but they occur most while standing. During my cycle I’m curled in the fetal position to reduce nausea and pain!
Hi jessica, I get nausea all month long as well but recently started taking ginger capsules whenever the nausea comes on and it dissapears within 10-15 mins for at least half of the day. I hope it can help you as much as its helped me!!
I was diagnosed with endometrosis in September of 2017. I moved to another state after my youngest was born and wasn’t told about the 2 large cysts, the size of 2 footballs, removed during the c-section until a year later that came back as endometrosis. I had surgery in October 2017 to remove small cysts of endo. I’m now nauseous all day for the past 5 days and my period has started too. I fear it has come back. My OBGYN said I would need a hysterectomy when it does return. I’m hoping I’m just sick with a stomach bug, but my life has never been that lucky.
I’m 23 and have been suffering very badly recently and would love to join a support group!
I’m 23 and it took me 5 visits to the doctors 2 stool samples, 1 smear and a pelvic ultrasound all to come back CLEAR. I’ve been in terrible pain 24/7 for a month now and my doctor believes I have endometriosis and has referred me to get lapracsopic surgery. I’m on public waiting list and I believe I will be waiting months to get it done. I’m currently taking 4 over the counter painkillers 3 times a day which is the only thing that helps to take the edge off the pain. Every single day I’m in excruciating pain, Im struggling to care for my 2 yr old and find myself becoming depressed. I have never heard of endometriosis up until now. I have had gall stones and given birth and I honestly have never felt so much Continuous pain in my life. my doctor told me to take my usual pain killers (paracetomal, nerofin) and that theres no other pain reliever they can offer? If anyone knows of some support groups or has any advice for me please let me know. My heart goes out to all suffering from this x
Please contact a pain management doctor! I’ve been in severe pain since 2008. I’m currently on oxycodone and fentanyl pain patch. I’ve had 4 miscarriages , 3 laparoscopic surgeries, partial hysterectomy, gallbladder removal , 6 colonoscopies with the 4 the one catching c . Difficile and had to have a fecal transplant .
Been to Mayo Clinic and had 3 obgyn’s .
Well, 8 years later…
Finally a very smart pelvic pain specialist tells me I have Microscopic Endometriosis .
I’m having my ovaries removed on Oct 5th.
I have lived in monthly cyclical pain from 7 to 15 each month . The pain effects my rectum and pelvic organs.
It is excruciating pain.
Please honey , get yourself to a painfoctorvwho understands and can help you and find an experienced obgyn.
Try the endo diet or at least cut caffeine out as I find this makes me worse especially near the time of the month
I never showed up with anything on an ultrasound but had all the awful symptoms. I was actually told I didn’t have it by a bunch of doctors. I felt crazy. I’ve now had 2 surgeries in the past few months and was diagnosed with stage 4/5 Endometriosis. I had to go through the private system as I was on the waiting list for a year for public. And they were trying to take my appendix out when I went to public hospital! Best of luck
Endometriosis has caused me a lot of pain. After trying several options I started using PeaPlex. I
am using it for quite a while now and it has given me a lot of relieve.
Hi, my sister was diagnosed with endometriosis a few months back. Nothing seems to help her get relief. You say peaplex, is that a prescription? What does that help for you? She has constant pelvis pain every day, for the past 10 years. God bless you.
Has PeaPlex still be working for you? I’ve had severe pain and no doctors are helping right now, so I’m hoping this might help. Let me know please and ty.
I have had endo since my first period, which they know now means i was born that way. Of course i was not diagnosed till i was 17, and 21 years ago that was pretty good, i had a great family dr, and after a year of going to the hospital every month for pain injections, she felt it was time to investigate. I did not know a lot about the disease at the time, I didn’t even know that it could come back, 6 lapos later and a complete hysterectomy, i am still dealing with endometriosis on my ovaries. I did have a mirina, it helped a lot, but after 2 children i knew i was done so we just took it all out, before that i was on BC continually so i had no periods, that too helped to slow it down, haviIng kids also helps. just hoping this new progesterone therepy Viscann helps, 2 weeks in, otherwise my right ovary has to be removed, which also has 2 cysts. I know walking helps me, taking vitamins and fish oils for those that have constipation issues, iodine, found in kelp helps with cysts. I know we have to really fight to be heard, and the symptoms are different for everyone, keep fighting, don’t give up!
I have not been diagnosed but I have all the symptoms. How can approach my doctor so that she will take me serious and check for it?
Hi, you need to go for a laparoscopy. You can get it done by an endometriosis specialist or a gyno. Best of luck!
I am 40 years old and have never experienced the painful periods that many of you have just usual dull pain but today I went for some fertility tests and the doctor found a ‘melon’ sized endometrial cyst hiding both my ovaries and another smaller cyst. He thinks its been there for years, he wouldn’t even put any pressure on it for fear of it rupturing!!!! Reading your comments how could I not know? Has anyone else experienced a cyst of this size? If so what type of operation did you need, and how long were you out of action? Thanks for your help – just looking for answers from people who have been there xxxx
Hi Louise – just over a month ago, my gynecologist felt a large mass on my uterus; an ultrasound revealed a very large ovarian cyst, bigger than a grapefruit. She referred me to a pelvic surgeon and they removed it laparoscopically about a week ago and I was finally diagnosed with endometriosis. Like you, I really had no symptoms associated with the cyst at all…just felt a little bloated! So I was shocked to learn it was even there. Usually, large cysts are totally benign but need to be removed with surgery. But I found the laparoscopic surgery very easy to manage. Even for such a big cyst, they only have to make small incisions. It’s typically outpatient, so you’re able to go home that day once the anesthesia wears off. In my case, I felt sore and tired for a few days; now, it’s been over a week since the surgery, and I’m up and about and feeling fine, but of course taking it easy as much as I can. Anyway, I hope this is helpful to you – just know you’re not alone! Large cysts can feel very scary, but modern medicine is amazing – I was so scared to have the surgery, but it was much easier than I could have imagined. Take care of yourself and be well 🙂
I was told two years ago that I have a golf ball sized cyst that I probably have had since high school (I’m 33 now). The gynecologist figured that I had it that long due to the sharp pain I told her I would get in the area just to the lower left of my hip bone on the right side of my body that I noticed that started when I was about 15. I thought it was from a cheerleading injury. It wasn’t until I had other issues and stopped taking birth control that I was given an ultrasound. If I hadn’t stopped taking the pill, the gyno said I might have not known about it until it got too big or burst. I was put on a different birth control to control the symptoms of endometriosis and hopefully shrink the cyst (which it did).
What kind of birth control did you switch too? My doctor told me I should look for a different one. That’s not a pill.
Hi my name is Nikki and at 32 years old I got very sick and had liver failure due to intermit rios’s I had 3 surgeries with organ removal as well if you want to contact me you’re more than welcome I’m now 48 years old and it is come back full force I had 10 good years with no pain and a lot of energy but that is all changed in the past year it’s been very hard to get anyone in the medical field to listen to me and understand that I know what’s going on I went through over a year-and-a-half of different tests they finally found it now I will get to see a doctor and hopefully they can help me I’m hoping I can get in touch with Andrew cook my case was very special and I was very sick for approximately two years with hospital care and a specialist care thank you for your comments we need your help to show what disease does to us My email is Nickimonkey@Gmail. Com
I had a cyst, that weighed 5 kg removed in 2013. It was an endometrial cyst (i think) filled with blood. It was in the right ovary. My left ovary never had pain. But to months leading up to the surgery i had horrible pain on the right side, and my lower back. I couldn’t sleep, i had issues urinating etc. I was studying at the University of Vienna at the time, and it (the pain) really dampened my experience. I had to undergo traditional surgery since the cyst was too big to be removed laproscopically. The surgery took four hrs since the cyst pushed my ovary into my colon. The surgeon had to cut my ovary off of my colon. It took me three weeks to recover. It’s now been 4 years and im having dull pain on my right side again 🙁 i’m married and we are trying to have children. But with endo i know if it’s possible. I’d like to think since my left ovary doesn’t hurt at all and I’ve never had problems with it that I would at least be 50% fertile. And to be honest i’ve never actually seen my diagnosis or surgery notes. I just figured I have endometriosis because of the symptoms of having dull pain in the pelvic area and having a cyst filled with blood, that meant that I had this illness. My periods are normal with minimal cramping and last 6 to 7 days, and sex doesn’t hurt, thank God! Anyway my biggest issue is wanting children. Has anyone with endo had children? I’m living in the United States now with my husband and our health insurance doesn’t kick in until November so I will wait until after then to see a doctor and hopefully can talk about fertility options if there are any. I know this response was very long but I hope it was somewhat helpful for some of you and I apologize if there are any grammar or spelling mistakes. English is not my first language.
Yes you can have children with endometriosis I had laposcpoic surgery when I was 20 for endo an cyst. Afterwards I went threw Lupron injection which puts you body into menopause for about a year after the lupron I was able to get pregnant an had my first daughter then another. Now 5 years later I’m back to have pain from endo an cyst. Getting ready to have laproscopic surgery again to remove what they can.
3 years ago I went to the ER for stomach pain and severe bloating. I knew something was very wrong. Turned out to be a baseball sized endometrioma on my left ovary that had ruptured. It was bad. I was in the hospital for a week. I had always had extremely painful periods with heavy bleeding and vomiting. I had the surgery a few months after I got out of the hospital to have the endometrioma and my left ovary removed. My surgeon found a lot of endo in there. I got pregnant 2 months later. When I was 5 months pregnant I had horrible side pain and they took out my appendix thinking it might burst. Turns out I had endo all over my appendix and my right ovary was fused to it. Almost 4 months later I gave birth to a perfect, sweet, amazing little boy so it is possible even after everything I went through!!! My Chinese doctor who had never shown emotion about anything ever even said that my son was a miracle.
Hi, I have had three children but always had terrible period pains I was diagnosed with endo at age 31 after having a burst cyst on ovary, I never had a problem getting pregnant so try not to worry and good luck
Yes. I had endometriosis since age 12 or so. Three major surgeries to deal with it. First to remove a 10 pound cyst; second, a softball sized cyst ; third, total hysterectomy. Lots of scar tissue, ligaments destroyed, unable to have children.
After the first surgery, took me a month to recover (age 18). Second and third surgeries took three months each. However, second surgery was a double surgery that took about 4 hours – doctor had to remove the cyst; scrape away previous scar tissue, and create a ligament to hold my uterus in place. Third surgery, I was diabetic and that slowed my recovery time.
Also keep in mind that I form lots of scar tissue, more than many.
Hi I’ve had an 8cm 1 that burst and I’ve never experienced pain like it. Had laparoscopy n had to b drained as with endo it’s all stuck inside. I’m about to have another op to try get it removed but may loose an ovary n high poss I may need a coloscamy bag. Horrible thing endometriosis is xxx I’m constantly in pain. And there’s not enough done about this condition. X
I also had a cyst that size removed last July, I basically had a c-section. It was too big for a laparoscopic procedure unfortunately. But recovery wasn’t bad at all ☺️ Good luck!
I did have a cantaloupe sized cyst. My doctor was able to drain it by sticking a needle into it while under general anesthesia for a laparoscopy.
Hi there, so sorry to hear! I did experience a ton of endo pain during my cycles from the age of 13-27, especially in the form of IBS-D (diagnosed finally at the age of 25), When I was 27, I was feeling super bloated and I was bleeding nonstop for a month before going to the ER because something didn’t feel right. I was sent home with a golf ball sized cyst and told it will probably go away. Two days later I went to my OB and the cyst had grown to a softball sized and they could no longer see my right ovary. I had a laparoscopic oophorectomy the very next morning to remove the cyst and my right ovary that it had destroyed (also when they confirmed I had endo). I am now 29 and will be seeing a urologist next month for Interstitial Cystitis pains, which I believe to be caused by Endo. My current OB doesn’t believe that, so I’m going to see Another OB later next month for a second opinion. I will keep searching til I find answers! I hope you are able to get your cyst removed as soon as possible – you never know if it will rupture or cause more damage. Best of luck!
Hi Louise, I was diagnosed with endo in 2003. My pain days are not associated with periods. I usually get the worst pain before or after my period and not that bad during. In 2011 I went to see my ob/gyn because the pain was a bit more persistent then usual (I have a very high pain tolerance). Turned out I had an endometrial so called “black blood” cyst the size of a large grapefruit on my right ovary. I had to have an emergency surgery to get it removed ASAP before it ruptured. It was so wrapped up around my ovary that there was no way the doctor could remove it and save that ovary. I had a smaller cyst wrapped around my left ovary too. The doctor was able to “untangle” that ovary and save it. The surgery lasted about 3 hours. They had to cut me open due to the size of that cyst. My incision was done in the same manner as a C-section. Recovery took about 6 weeks, although I was back to work after 4 weeks. Thanks to my doctor who was willing to do everything possible and at least save 1 of my ovaries, 16 months ago today, after undergoing another laparoscopy and a round of IVF, I had a beautiful baby boy. I wish you all the best! Stay strong and feel well!
Thank you so much for this wonderful and very detailed explanation of what it feels like to have endometriosis. I was diagnosed about a year or two ago, I am 26. Some people say that is a little young for a diagnosis, but those same people do not know the trauma that caused it. In 2009, when I was 19, I was sexually assaulted. The next morning I was taken to the ER for massive blood loss and a vaginal laceration, all resulting from the rape. The rapist was never questioned nor apprehended and is still walking free to this day. It has taken me this long to get a job where I have health insurance, I have been on Medicaid. I had a laparoscopy and an excision surgery last August to remove some of the scar tissue from the trauma and the endometrial fluid. It’s now almost a year later and I am in excruciating pain again, almost worse than before the surgery. A patient at the place where I work told me about Dr. Andrew Cook and the amazing wide angle excision surgery he performs. I am dreaming of a day where I can live a life without pain, not sure if that will ever come. Life is getting harder and harder. I work a job that requires me to stand for 12 hour shifts and I can barely make it anymore. By the first day, it feels like daggers are being stabbed into my groin and lower back. I get nauseous and throw up, am constipated and have painful bowel movements, and I get so fatigued I can barely stand up. Just praying there is some hope I can come out to see Dr. Cook one day and that my new insurance will cover the surgery.
how was the lap. & excision surgery ? im getting it in a few weeks & im pretty nervous
I feel your pain. I can hardly walk anymore without a walker. I took Lupron Depot shot and it caused a stroke instead of helping my endometriosis. Now I’m having trouble getting surgery. Evause I’m high risk. Being bed ridden after stroke I am overweight too which makes me more at risk for hysterectomy . I’ve had 4 blood transfusions because of bleeding. Considered suicide more tha once!!! I pray for everyone who has this. I lost my job and on disability my health is so bad. I have swelling in my legs and it caused me to get infection in my tissue . It went to my. Mood stream and I was given 48 hrs to live if the meds didn’t work fast. I came home 8 weeks later and still doing rehab to gain strength back. I see at risk pelvic health specialist soon and I pray they can help.
I’ll keep you in my prayers, I hope you get well soon.
Hello, thanks for sharing. I have symptoms of endometriosis. I’m in so much pain. I’m not sure what it is my first step to getting help. I don’t want to be misdiagnosed.
Try to find a good gynecologist who knows about endometriosis. I had to go through 3 doctors before finding one who actually believed my level of pain and knew all about endometriosis. Don’t give up after one or even two opinions!
Yeah it’s very hard to live your life with pain that doesn’t go away. especially for me to raise 4 kids and try to be happy and not angry and not to take it out on the people who you love. it’s really sometimes so hard to do anything when you’re about to have your monthly period your in the worst most horrible pain and no one understands
Oh you poor thing, I hope you get it sorted soon. I have had trauma too… I have been bleeding for weeks, the doctor says it’s because my inplant has run out… but I have a swollen stomach, constapation and pain for years! Did you have bleeding too? Best wishes xx nik
I just turned 40 in July and I’ve been suffering from endo since i was in my early teens. Had a hystorectomy at 25yrs old, though they did leave my right ovary. Everything else came out. For 7yrs I had no pain. Then it came back with a vingance. I have now had 3 surgeries in 8yrs since the pain started again. Just had surgery last June for a cyst due to endo and 6 mos later had to go to the ER for terrible pain in my abidomen which ended up being another cyst that I currently still have. Seen my OBGYN a few months ago after the ER visit and she said it was at 3cm so she wasnt worried about it. Told me to come back in 2mos to check it again. So I havent been back yet. I think cause I am so tired of surgery and how it never fixes anything. I have no sex life, dont even want sex due to the terribke pain i get in my abdomen/stomach. On top of that not to sound nasty but when i have to go #2 it sometimes feels like child birth. I literally have to break out into my breathing techniques to try and ease the pain. I am tired of docs not listening or blowing me off. Its like they make it seem like its all in my head. But I know its not! My mom suffers from the same thing.
Yeah no one understands the pain we go through every day. the doctors just think we are over reacting.i have been waiting for my surgery but afraid that the pain will still be there.
I had surgery in April, and here I am 6months later and I am having the pains again.
I have been dealing with pain and cysts since I was 12, and it wasn’t until I was 34 and off birth control for 3 years before I, by chance, had a new Dr who said “it is endometriosis.” the only issue us to slow the growth process, they want me on birth control, which I can not be on for the side mental side effects.
I’m so frustrated and considering a hysterectomy, but have heard it can come back even after that.
My sex life is still good, pain currently are only a few days before my period or when I ovulate.
Has anyone tried a holistic approach?
Accupuncture?, anything for pain?,
Have you tried either the mirena iud or a medication called visanne
Hi Crystal, trust me you are not alone. Im so tired of Doctors treating me for UTI, bladder infections, you name it. I think i have been tested for std’s 20 times in the past 6 mouths and like always a tylenol like what the hell is a tylenol going do. I try to prepare myself for the sweats and start my breathing techniques as well only i have to forgive me but totally naked on the bathroom floor because its nice and cool there and cry until i pass out from the pain. What else can i do? I just had a hysterectomy and i thought the pain for sure was over than my doc sent me a message that i have adenomyosis and endometriosis and all i could do was cry because this meansthe pain will be back. The pain wasn’t this bad until after i had an endometriosis ablation. Your not alone and i have lost my husband my mind and barely holding on to my position at work. Not that im happy anyone else in the world has to feel this way, I sure am glad i don’t have to pretend like its all ok and fake what I’m feeling because people around me can’t handle it.
Had it since I was 9 no one believed me of the pain. I have had a hectcomybut still had pain. Had my apenndix out they couldn’t fit nd it. It was so wrapped in scar tissue. Then the doctor says never seen anything like it. He had to detach my stomach and all other insides to get to my appendix. That scares me, what else is growing together? What else and how will I know.
Did you bleed for weeks? Nx
Wow. We have very similar stories! Full hysterectomy at 27. They took both ovaries though, they were too infected with lesions. Relief for about 6 years. One sugary and too many experimental procedures to name. Going to see specialist in excision sugary next. Best of luck on your journey! !
Reading through these comments you are all such strong wonderful women and I’m so sorry you have to go through this. I had symptoms from when I was quite young as I got my period when I was 11. as nothing ever showed up on an ultrasound I felt crazy and put off having surgery. I even had doctors tell me I didn’t have it. Both gps and doctors in emergency at hospital. As my mum and my sister both have stage 5 my family urged me to have the operation. Once I was 19 and had been vomiting for years every time I had my period and was completely out of action every month, I knew they were right. It got to the point where I was constantly in pain and anemic. I had almost no appetite and had constant cramps and had flu symptoms all the time. I’d tried several pills, injections etc. over the years but nothing had successfully stopped my period. I was put on the public waiting list for surgery.
I was diagnosed with stage 5 endometriosis at age 21 in December of last year. The silver lining is that my family are so supportive and understand. Even though it’s such a horrible diesease I was relieved to finally know I’m not crazy. I’d had several doctors not take me seriously, say period pain was normal and was even misdiagnosed with an appendicitis. I had an ultrasound which showed no cysts of Endo but a swollen appendix. The public hospital sent me packing and said to come back when it was closer to rupturing. My family convinced me to go to a private hospital.
They booked me in for surgery the next day. They weren’t sure if it was my appendix or Endo but I had a great surgeon who operated on my family several times. When I woke up from the surgery I immediately knew I had endometriosis removed. I could feel the scrapping, the burning and the cutting. Luckily soon they gave me stronger medicine. The surgeon said I should’ve had surgery years ago. He was really disappointed the pictures from the surgery didn’t work as he wanted to show me and possibly use me for a case study? He booked me in for a second op and the next day I got to go home.
The doctor prescribed my Estelle 35 2mg(same as Diane) and cyproterone acetate 5mg. To be honest it has had made me lethargic and dried out; but it’s the only hormone that’s successfully stopped my period so I’m grateful! Plus I’m sure my body will adapt in time. I had my second op 3 weeks ago. Hopefully no more surgery for a while.
Thank you all for sharing! I find your stories give me strength! Best of luck to all of you Xxx
Try danicrin….you just described my life before danicrin. My Dr. Prescribed this for me I was suppose to stay on it go 6 no but the side effects were pretty bad. I did stay on it for 5 months though and that was 30 years ago it worked for me…..I was ready to check out of life if it hadn’t worked.
Crystal your story is just like mine. I’ve had a hysterectomy and 3 laproscopies. I’ve gone 6 years pain free, but now it is back. I’ve accepted that it’s caused me to to go into depression.
I have had endometriosis since I was 14. I was misdiagnosed with PID as well as IBS. The other answer was always period cramps or it was in my end. When I was 17 they finally found the endo. I have had 2 surgeries for the removing of the endo and the scaring. I have been through physical therapy (the weirdest thing ever), weve changed my diet, tried exercising. Nothing relieves my pain. Over the years I learn to deal with the pain. The cysts are really mild in pain compared to the endo.. I am now 27 and working towards a hysterectomy. To Be honest its the only thing I see helping with the pain for more than a year. The pain pills are only to take off the edge, the cortozone shots did not sound appealing nor like it was even going to help. Ive had a kid, NOTHING MAKES ME FEEL BETTER!! Curling in a ball and crying with my heating pad is help however having a 3 year old is not a frequent option for this mom. Gets frustrating that I can’t do some things with my daughter because I am in pain. The hysterectomy has me a little nervous, Im afraid it will not get rid of my pain.. Being 27 Im getting rid of options I may want later in life.
I have had Endometriosis since I was 14. Up until I was 17 i was diagnosed with PID, IBS and told the pain was all in my head or that I was making it up or that it was period cramps and to get over it. After 3 years I was pretty sure I was just losing my mind. I found a great OBGYN that actually took the time to hear what i was complaining about and sure enough she found my Endometriosis. This was when I had my first endometrial ablation. I was back at work in 4 days and felt amazing for the first time in years!!
Hello ladies. I have had endometriosis since I was 14 years old. I was misdiagnosed with PID, IBS and told for many years it was period cramps and the amount of pain I was in was all in my head. When I turned 17 I finally found an OBGYN that diagnosed me correctly with the endometriosis. At that time I had my first endometrial ablation. I was back to work in 4 days and I felt AMAZING!! At that time I was told my chances for a baby were very low.
That left me feeling great for about 6 years or so before the pain came back. When it first came back, it was hit or miss on the day for pain. Of course as time goes on, the pain increases and the number of pain free days decrease.
Then at 24, I found out I was pregnant. Which as we know, could have helped with the enod. Spent a majority of my pregnancy with Maternal Fetal Medicine, in the hospital and on bed rest. Ms Isabella Mae was born with an 8 minute delivery from water breaking to baby out.
We have tried physical therapy – most invasive thing I have ever done. Yes, physical therapy for endometriosis. I have tried the chiropractor, which does bring some relief but is very expensive and of course not covered with insurance. The pain clinic wanted to do cortisone shots in my back, which I denied as there is not a lot of research showing prof this would be effective. About 2 years later I had my second surgery, took a week off for this one. I currently sit at work in agony with my heating pad on my stomach and taking 2-3 Tramadol with ibuprofen for minor relief. Pain clinic again is recommending the shots in my back which I again refuse due to lack of research on it.
My daughter is now 3 years old and I feel like I’m not doing everything I can with and for her due to the pain. I am at zero pain free days again and pretty sure its going to make me crazy. I have been asking for a hysterectomy since I was 17 to just be out of pain. Now they have finally offered it to me as they have run out of ideas and do not want me on the pain meds.
It can be really frustrating to know I look find and feel like death on the inside. Eating hurts, drinking hurts, walking hurts, stretching hurts, sitting hurts, and sex is out of the question. Some days I hurt so bad I literally spend my ride to and from work with tears pouring down my face. Frustrating that nothing really makes the pain go away. Stress seems to make it worse, sometimes I do nothing and child labor sounds amazing compared to how I feel. I have a 75 year old grandma who for years has mad me feel like the pain is in my mind, after I sent her the link to this page she seems to have a little better understanding of my daily struggle with this nonsense.
Some days it takes everything I have to get out of bed an go for the day, some days spent in tears all day trying to push through. Try to smile, try to pretend like everything is ok when really Id give a limb to have a pain free day. I have my pre op scheduled for October 26th and at this point just hoping for the best as this may not get rid of the pain either.
Hi! It is really depressing that all the Ob-gynes I went to told me that endometriosis is for life. So as early as possible, try to have a baby. I was diagnosed with endometriosis last August 2015. I was just turning 21 by that time. We thought I had problem with my kidneys busy to our surprise when I had transrectal since Im still a virgin, they found out I had 6cm cyst so we all decided it to be removed since its already big. By the time The surgeons were operating on me, ( Laparoscopy was done and no ovary was removed since my gynecologist says Im too young that my overy be removed) they found that my cyst grew bigger in just 2 months. From 6 cm to 8cm. I recovered 2 weeks and started working again. Then, by January 2016, I had this pain again. So I went to my gynecologist. To found out that my cyst is back! I am taking now Visanne Dienogest, a medicine for Endo cyst. Its pricey but it helped my cyst not to grow bigger and my cyst is getting smaller every time I have my ultrasound. It is really affecting my mood and I have pimples now and then because of the side effects that the medicine has. And I eat a Lot. A lot. All because of this medicine. Its really devastating that theres no cure for this and we all have to suffer for the rest of our lives. I am planning to get married and have baby by the age of 23. I dont want yo grow old without having children. Though my parents are opposed that I will be getting married, I wouldnt like to suffer either or have regrets why I didnt plan to have a family earlier.
We all just stay positive and I hope all of us will get through this by God’s help. Surrender and Trust in Him. He will never leave us. After all, those who suffer would never be forsaken.
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” – Deuteronomy 31:6.
We will all get through this. ❤️
Hey Bleesy. I am in the same boat as you that my doctor told me to take Vissane Dienogest,currently i am not married but i really want to have a baby. you said that you will be getting married so does the endo affects you for having a baby??
Hello! I am 16 years old right now and constantly experience very painful cramping in relation to my period. It usually makes it next to impossible to go about my daily life when I can hardly walk. I tend to experience vomiting, diarrhea, and fatigue/faint. I am not sure what the cause of this pain is as the women in my family have never complained about such symptoms during their years of ovulation… I’m not sure how to approach this problem. Should the first course of action be to see a doctor? I’m very worried that there could be a larger problem behind the scenes that has led to this. I hope everyone in this community is doing well! Thank you :))
Hi my name is Nicki and I am 51 years old. I was diagnoised with endometriosis at the age of 25 just 2 weeks before my wedding day. In my teenage years I had a lot of time off school due to the pain before and during my periods but back then noone knew about the disease until finally one day I changed to a female doctor and she had been learning about it. Anyway to cut a long story short and to give hope to any women thinking that it is no possible to have children – we have 4 children aged 22, 20, 18 and 11. I was told that it was likely that i couldnt have children but proved them wrong! After having 3 pregnancies so close together i felt that really helped. I no longer have any pain or periods because I am out the other side and going through menopause!! I really want to encourage any woman with endometriosis to get help AND Support from groups. Life can get better
I wonder where this come from ”fatigue as severe as that experienced with advanced cancer”. Is there a study or is this your own experience?
Sorry if this is TMI
Hiyah, I am wondering if I could get some advice from people who have been through/are going through endometriosis. I am 18 years old and the last year and a half/2 years I have been getting really bad period pains. I have been back and fourth to the doctors and have been on numerous contraceptives to attempt to thin my lining and reduce the pain or even stop my period but nothing has helped. I have to take prescribed codeine every month so that I can go to work, university etc. I am bloated a lot of the time and even when i’m not on my period i get lower abdominal pains (sometimes even pain below my lower abdomen) – recently i have been getting these pains and noticing it more after i’ve been sitting/lying for a while and this has happened before but comes and goes. However aren’t as painful as my period, but are still painful enough to take panadol. I am just wondering if anyone has any advice? or thinks i should try another doctor?
I have not been officially diagnosed with with Endo but I had an MRI that has shown a possible endometrioma. I live in chronic pain on my lower left pelvic area and deep in my hip near my rectum and it runs down the front of my thigh. It’s much worse during my cycle but the pain remains even when my cycle isn’t on. I’m so tired of hearing drs say Endo pian is only during your cycle. Can anyone else relate? I have all of the symptoms that point to Endo..this article so describes me . Having surgery to remove fibroid and cyst and any possible Endo soon. This is so hard to deal with.
Wow, I have cried threw all these comments so much that I could hardly read. I am 37 now and have suffered with Endo since I was 13. I have had 4 surgeries and I'm waiting for another due to how severe my Endo is. After my first surgery I was told I had stage 4 Endo and that they have never seen such a server case. My whole life ive lived in such horrible unbearable pain. In total I've had 6 tumors removed and a full hysterectomy. During my second surgery the fibroids where so bad that it caused my insides to grow together. My Oncologist told my fiance that my insides where growing together due to the amount fibroid growth. He put holes in my bladder during surgery while trying to separate it from the lining of my stomach. After a 7 hour surgery it was not yet over for me as I had hoped for. I really thought this was gonna be it and the pain was gonna be controllable. Boy was I wrong I think im worse off now than ever before. The oncologist didn't close all the holes he had made in my bladder during surgery. My abdomen filled with urine for 3 days after surgery until they noticed something was wrong. I had a small blood clot and a huge abscess in my lower abdomen. My oncologist the Infectious Disease doctor and an Internal Medicine doctor all truly believed the other holes would close on their own. I had 2 drainage tubes put in and waited 2 weeks before they finally did another surgery. By then it was so bad I had flat lined and they finally took action. My abdomen was full of urine and caused more damage to my insides than just the abscess in my lower abdomen. A week before I finally got to go home after 27 days in the hospital. I had started leaking urine even though I had a catheter. Doc said it was normal that it happened at times. Well I was released and was able to remove cath after 10 days after 2nd surgery. Well I was still urinating all the time, literally all day long. So I was sent to a Urologist thst ran so many test said I needed a new bladder sling put in. I went threw weeks of pelvic floor therapy and nothing helped. I was still wearing bladder pads urinating all day long. By this point my self confidence is gone and I feel like a walking port a potty. Im ashamed to go answer I don't want anybody to smell me and I hurt too bad I feel as if everything is falling out of my vagina. My pelvic pain is so intense most days I can't walk and when I do im urinating the whole time. Ive had to leave the store in the middle of grocery shopping because I've had an accident and looks as if I've peed myself. After nothing changed street having bladder sling put in I knew I needed a new specialist. I was sent to Dr. Farzan in Lubbock who specializes in Endo. The first visit with in minutes of the exam he knew what was wrong. Urine had been leaking threw my vaginal wall. Due to my bladder and vagina growing together. I started to wonder why the so called Urologist I had been seeing didn't know this. So now im waiting on what I really hope to be the last surgery in going to have. Im waiting to get results to see if the Endo has also Spread to my Intestines or Colin. Ive been bleeding and having the same sharp horrible pains. I feel for any women that has been diagnosed with this horrible Disease. Im looking for the light at the end of the tunnel but still no light in sight. Thank you all for sharing your stories I feel like I'm not the only one anymore. It's horrible to know so many women are pretty much going threw the same thing I am.
I had severe pelvic pain for the first two days of my period starting when I was 12 years old. My doctor prescribed Darvon because my pain was so bad I actually fainted. I was admitted to the emergency room when I was 16 and had my first pelvic exam in the hospital. It was also very painful to go to the bathroom, and there was blood in my stool. I missed two days a month from school all through junior high and high school, and it really impacted my performance in school. I was not diagnosed until I was 18 (this was in 1968) and an ob/gym felt a mass in my abdomen and thought I may have cancer. Unbelievably I had surgery the next day, a Saturday, and woke up in a bed in the hall of the hospital because it was so crowded. I had a mass the size of a small melon in my abdomen and both ovaries, my bladder and parts of my intestines were fused together with scar tissue. The doctor performed a complete hysterectomy and that resolved my pain. The doctor didn’t tell me the cause of my pain was the endometriosis, and I found out 10 years later when I saw a new doctor who was shocked that I had a hysterectomy at the age of 18. He read my file and said “you must have been in tremendous pain for years for it to get this bad”. That’s the first time I realized the pain I had suffered for six years was caused by endometriosis. I haven’t had pain since the surgery, but every month I struggle with anxiety and depression around the time I would have had my period. I’ve wondered if this is caused by the pain I experienced when I was a young girl/woman and could it be a form of PTSD? I’m so glad this disease can be treated by a laparoscopy now, for those that are suffering, instead of abdominal surgery that leaves adhesions and a long scar.
Had a Partial hysterectomy removed my uterus left my ovaries haven’t had pain in a while now it’s back and it’s like it never left us it possible if is growing back rectum pain and horrible pelvic pain please help I thought it was gone!
I have suffered from endometriosis since my period began when I was 15. It always effected my life, but when I turned 30, it spiraled out of control. I suffered the week before with pain and swelling, which I referred to as my Saturn ring of pain, and then the cramping would start, the kind that puts you in a panic attack because it’s so uncomfortable. Next phase, vomiting, sometimes convulsions, then the 24 hour blackout because my body went through too much. Week 3, more pain and swelling. Week 4, recoup to start all over again. I saw sooooo many doctors, take these pain meds, have babies, see a shrink, let’s try medications, all to no avail. Finally, in my late 30’s I found a doctor who listened and I had a hysterectomy. It helped with the period part, but here I am almost 50 and I still suffer. I have horrible swelling, I even get women who congratulate me because they believe I’m pregnant. I can’t wear anything except stretchy pants that are loose, can’t wear a one piece bathing suit or anything that constructs my stomach or I will blow up and then the nausea takes over. I have burning under my skin that goes up my lower back and down into my legs. At this point in life, I don’t think anyone can help me, and my only solution to date to help with the pain is by using edibles to control it all.
I am 78 and2yrs ago I started menistrating everyday and when the monthly came, it would be heavy. For the last year I have had cramps so bad everyday and now they are so bad I have to lay down til the pain subsides and now after 1 of these attacks I fill the toilet with so much blood, it makes me so weak, I cannot stand up. I have had clear crystals that join together and pass through the bladder. I think I am going to run out of blood and die. I need help.
I have always had heavy heavy cycles through out my entire life. I have always been told that it wasn’t healthy so I would get the depo shit which stopped my shots all together. I had my last baby July in 2016. And in late 2017 I have Excruciating abdominal pain and I bleed for a month (no exaggeration) or more. I’ve gone to Obgyn and he told me most likely it was cancer (devastating) and it turns out I did not have cancer. I explained to one dr that I feel like there’s “movement” in the area and it it extremely pain full. She laughed at me and said that’s impossible for movement to happen. They offered me and IUD saying that will eventually stop it. I walked out and never returned. And the pain nor the bleeding have stopped. I have had to get several blood transfusions since 2018 because I lose so much blood. I have had to take intervenious iron because the pills make me sick. Sorry for the rant but I’d like to really know what are my options so I don’t have to live this way anymore ? And is there actual treatments