Sudden onset endometriosis

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I was diagnosed with endometriosis about a year and a half ago when I had to have an ovarian cyst surgically removed. Apparently it was so bad my doctor could not believe I had always had regular periods with little to no pain. That was when I was 29. I'm 31 now and despite being on continuous birth control I've been bleeding for more than two weeks (regular period for a few days then heavy spotting almost every day since). I've also had abdominal pain for a week (as high as a level 4 although I have severe Crohn's so my level for is a normal person level 6 or 7). I called my GP a couple of days ago and she wasn't worried, but it's gotten a lot worse with heavier bleeding and more pain today. Is this normal? 

 

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7 Replies

  • Posted

    Hi Ryann

    I am very sorry to say I can't help you with this.  Other women will pop in but unfortunately for you, all the forums here tend to quiet down on weekends.

    There are some Facebook sites called Endometriosis awareness and you might get a quicker reply there.

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  • Posted

    Only you know your body. If you feel something is abnornak, go the urgent care or the ER. Your Chron's disease vould very ikely be a misdiagnosis: it could habe been your endometriosis all along. They told me I had colitis and IBS before my GP put the clues together, and now I am going to see a pelvic pain specialist soon.

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    • Posted

      I know the Crohn’s isn’t a misdiagnosis just because of the tests and surgeries I’ve been through. It’s severe enough that with a scope they can see the inflammation and I’ve had 2 bowel resections because my GI tract became that inflamed. That being said, it is lieklu connected. Crohn’s tends to involve inflammation throughout the body, I’ve had bad knees since middle school, eczema, inflammation in my eyes, and endometriosis. They may all be cause by Crohn’s, or some unnamed inflammatory condition that starts them all, but regardless, I do have them all. But I know a lot of GI issues are misdiagnosed. So many people just want an answer and some doctors are just so overworked they just slap a label on it and pass out a prescription. Unfortunately (or fortunately because mine does appear to be well managed despite its severity), that diagnosis was correct for me. And endometriosis was actually diagnosed via surgery to remove a 6 cm cyst, looking back I see the symptoms but with endometriosis not being serious (very painful but aside from tortion of the Fallopian tube and the ovary dying and causing sepsis, it’s not serious like Crohn’s which can cause bowel perforation, and I’ve been close to that many times. 
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    • Posted

      FYI, endo can eat right through intestinal walks and cause rectal bleeding. It can also require bowel resection: been there, done that, at 54, 27 years after a total hysterectomy.

      There is some thought that endo may be closely tied to autoimmune diseases, or sometimes it might be. A lot of inflammation arises from autoimmune disease. Perhaps in another 10 or 20 years they'll know more about an AI connection.

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    • Posted

      FYI, i was diagnosed and had my first obstruction at 11 years of age, my first resection at 13 years of age. My first period was at 14 years of age. I think it’s connected and probably all one big diseases, but it is still two separate illnesses. 
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    • Posted

      I never doubted your Crohn's, dear. I got my period at 10. When I went through 3 years fighting to find out what was wrong I was finally told that I either had Crohn's, ulcerative colitis or endo. I hoped for endo.

      Nothing gives anyone the right to come into this forum and dismiss the pain & suffering of the women here. I had it easy because as horrific as my endo was, when I had my total hysterectomy in my 20s, I got relief and had 27 great years before endo came back and went through my bowel again. My friends with Crohn's had nice easy lives until into their 30s or 40s. You were not so lucky.

      I am glad that your endo is the lesser of your problems. If you think that endo cannot cause bowel obstructions, you are misinformed. I stopped short of saying that Crohn's & endo are related because I don't know that they are. If you read what I said, you would know that I did not discount the possibility of a connection, specifically thru the possibility that endo and Crohn's might both arise from autoimmune disorders.

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  • Posted

    Hi, like yourself, i did not have any severe symptoms for endometriosis except for mild IBS and was suddenly diagnosed with having bilateral ovarian cyst one of which was an endo and the other a dermoid cyst. I am closing in 2 years now since I had a laparotomy and I was diagnosed with an endo recurrence last October (5cm) but the doctor did not want to operate me so soon and I have since monitored situation and will be due for my next scan tomorrow. I have been on continuous birth control pill and i did have points where I was having  a normal period and I stopped the pill for at least 4 days to allow the old blood to pass through. Recently i had my 3rd bleeding episode and i had cramps for 2 days but not to the extent that i was immobile. So i stopped the pill again for 5 days just to allow the bleeding and it was quite gross with blood clots being released everyday. I will know tomorrow  on how big my cyst is now as I still don't experience any pain or any indication that something bad is going on internally. I guess the best way to know is to consult with your doctor although sometimes i admit they may not be able to give the best advice or diagnosis but having the scan always gives assurance on what is actually going on insider. 

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