Frequently Recurring Endometriosis

Hi! I was wondering if anyone had any similar experiences or had any input/advice for me. I am 23 yrs old and I was diagnosed with endometriosis in May of last year (almost by fluke actually) I kept having recurring pelvic and back pain that no doctor could explain and terrible flank pain that they kept thinking it was kidney stones (which it wasn't). One night i was in the ER on a morphine drip for unbearable flank pain, the doc ordered a CT of my kidneys and happened to notice on the bottom of the image two 4+cm hemorrhagic cysts on each ovary. This was when I got a referral to a Gynaecologist who immediately scheduled me for a lap as he was certain it was endo. Sure enough, it was. There was 3 lesions (he didn't say anything about the size or depth and no mention of scar tissue) and the pouch of Douglas was filled with endometrial tissue to the point where it had stretched and is currently sitting (ever so slightly) above my colon. The gynaecologist told me in my post op that he didn't correct that anatomy as it could cause further complications. He put me on a progesterone birth control and told me to come/call back should the pain come back. In December of that same year my husband and I decided to try and conceive. As soon as I went off the pill the pain was back, and this time with a vengeance. I called him back and he scheduled me in for another lap in February where even more endo was found and advised us to keep trying. The lap seemed to help, but only for a short time. My periods were more painful than they had ever been and by the beginning of June I was needing hefty pain killers everyday. I called him again and he explained that my symptoms were typical of a progressing disease and he would schedule another surgery. I am hoping for a cancellation as my appointment is not until October. I am in agony and my husband and I have given up trying to conceive for a while simply because it is far too painful.

(Sorry for the long post.. :s)

Any advice or stories of your experience are all welcomed!!!

3 Replies

  • Hi :-)

    I've had my own issues with adhesions around my ovaries.

    You may already know lots about endometriosis, if not, you

    may find this site helpful :-)

    Chronic pain is very stressful, it will get you down and that

    makes the situation worse. Google pain- endometriosis,

    various links come up, you never know when something

    really useful will show up :-)

    Best wishes :-)xB

  • Thanks! I'm wondering though if it normal that it keeps recurring so frequently. Do you know or have any experience with that?

  • I'm sorry I have no personal experience of endometriosis. But as far as I was able to search, indications were that only pregnancy or menopause gave any positive relief. As it happens, I did know someone who had a child primarily because of endometriosis. But

    we lost touch and I couldn't say for certain if the condition had changed.

    The link I sent you mentioned a connection with candidiasis ( yeast

    overgrowth) and that's something else I can relate to. At one time I made an attempt to cut down on bread, alcohol anything with yeast in it. It does get to the point where you'll try almost any suggestion to cope with chronic pain.

    Because I'm through menopause I think that's made the biggest difference, for me, as far as pain relief is concerned regarding my adhesions around the ovaries. I still get occasional twinges but nothing like it used to be.

    I was told that once adhesions take hold they're permanent, an operation can cause them, I had a burst appendix aged five, mine probably were the result of that.

    There must be women on this site who have the same challenge as yourself, I hope someone can give some positive advice :-)

    Best wishes :-)xB

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