Julies Endometriosis Story

I was diagnosed with Endometriosis back in 2002 after complaining of pelvic pain for a few years before that! The condition was discovered during removal of a damaged fallopian tube, the endometriosis was in the tube removed.

Later pelvic pain continued and the remaining tube was removed after blue dye proved it was also damaged. I later continued to suffer pelvic pain and lower back pain and after being sent to a Physio for back pain and counsellors to deal with depression and anxiety made worse by the ongoing pain then had a hysteroscopy and laparoscopy where extensive endometriosis was found and that was in 2007 5 years after it was first discovered!

Adhesions had stuck my ovary to my bowel and tethered my fallopian tube stump on the other side to my bowel, in a nutshell a right mess! on top of that endometriosis and adhesions were found around my belly button it had crept into my abdomen.

The operation was not pleasant and I spent days in hospital recovering from what originally should have been a straight forward procedure and morphine disagreed with me. The pain relief two weeks after the operation was stunning for the first time in years I felt great no pain but alas as the months went by the pain crept back and intensified. Zoladex injections were the next step directly into my abdomen monthly to send me into fast tracked menopause and synthetic HRT Tibolone.

The Gyne told me if this worked it was endo causing the majority of my problems if not it was adhesions. After 4 months I felt no noticable change in pain and discomfort so they took me off both. The pinching has just got worse and worse to the point I often cannot bear even slightly tight waistbands on trousers and had to buy baggy oversized trousers. The pinching is worse when i sit, a bit improved when I am upright and walking and gets steadily worse before my menstruation which is now all over the place due to natural menopause (I am 52). I can only describe the feeling as someone placing my ovary in a clamp and twisting and pulling it, it makes me feel quite sickly. I start to feel quite unwell for two weeks around the average time of menstruation and up to a week after, thats if I have one at all, I am ridiculously tired and have horrendous bowel problems rangeing from constipation to diarreoh accompanied by internal and external piles and often fissures, bloating, low back pain and I wake every single day with pelvic and right hip pain. The pain seems to always come from the right pelvis yet apparently most of the endo was found on the left.

However there is yet another twist to this story a CT scan recently revealed I have Diverculitis Disease and a small Hiatus Hernia along with a mid high prolapse and IBS.

So as things stand I am pretty uncomfortable for most of the time although it fluctuates wildly. I have been offered a Bilateral Salpingo Oopherectomy which Gyne said he could try laparoscopy to remove ovaries but if he found endo/adhesions were extensive again he would have to revert mid op to a full abdominal hysterectomy BUT he warned me that the adhesion risk for me was high as I am one of those people apparently prone to adhesions and the operation could actually make things worse!

So finally I’m in limbo land right now and do not know what to do for the best it feels like a huge wild gamble either way. I’ve decided for now to live with the awful pain and keep popping pain killers and stool softeners, anti spasmodic medication and sleeping pills but its really not fun and has turned me into a bit of a recluse and an anxious one at that! I know of course I am far from the only one to go through hell but its nice to get it off my chest, thanks for reading it to the end.

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