“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.
Hi,
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.
Kate
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
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
Love,
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.
Rachel, 20
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
Hi Kate,
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.