What it Really Means to Have Endometriosis

Girl in pain

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.

In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.

In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis.
Is your pelvic pain caused by endometriosis?

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.
Learn how to end this suffering.

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.

Woman in hospital

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.

Learn More About Endometriosis
Endometriosis Symptoms
Endometriosis Treatment Options

Comments 43

  1. Jessica

    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.

  2. Melissa

    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!!

  3. Kyra

    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.

  4. Heather

    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???

  5. vinolia

    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

  6. Kiara R

    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

  7. Rebecca Levenseller

    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.

  8. Amy

    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.

  9. Hannah

    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!

  10. Kaitlin

    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?

  11. Rina

    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.

  12. Cinthya

    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.

  13. Brodie

    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

  14. Katie

    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.

    1. Sarah Smith

      Hi Katie,

      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

  15. Christy M

    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.

  16. Liz G

    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,

    1. Margaret Sterner

      Hi Liz,
      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.

  17. Sinenhlanhla

    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!

  18. Suzette

    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.

  19. Jessica

    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

    1. Margaret Sterner

      Thank you, Jessica, for sharing your story. The burden this disease places on women is heartbreaking.

    2. Angela

      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.

  20. Donna

    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

  21. Lakkie

    Hi Everyone,
    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

  22. D

    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.

  23. Moraima Montenegro

    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. 🙁

  24. Kimberley

    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.

  25. Misty

    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.

    1. Chaya Miri

      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.

  26. Kim Scharfenberg

    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?

    1. Margaret Sterner

      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

    2. Katie

      Hi Kim

      These symptoms are exactly what I had prior to my first endo excision surgery! See a gynaecologist – it most certainly could still be endometriosis

    3. Tracy

      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.

  27. Kate


    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.


    1. Margaret Sterner

      Hi Kate,
      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

    2. Mario

      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.

    3. Cassandra

      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.

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