A little about me

Hi All

I am 40 years old and have suffered from endometriosis since 18. At 32 after one child I opted for a partial vaginal hysterectomy with preservation of ovaries. Fine for a few years and almost pain free until 3 years ago. Surgery after many many months of pain and admissions to hospital, woke up to find right ovary had been removed as was stuck to the bowel with active endometriosis and adhesion's. Left ovary preserved and unstuck from bowel wall. My lovely surgeon gave me the news and I quote "Its a real bloody mess in there"

3 years on and started 4 months ago with cyclical rectal bleeding and pain for a least a week each month. Have now also started with bladder symptoms of urge and frequency which are driving me insane... No infection present but blood in every sample of urine and often when trying to go .... Also horrendous pain when getting intimate.....

Fed up as I thought the hysterectomy would be the end of my problems, now feel like its all starting again... Waiting for Gynae appt in 3 weeks time but dreading the outcome ......

2 Replies

  • I am so sorry to hear of your suffering from endometriosis. I understand your pain as I have lived it. I am 61 years old. Endometriosis also since age 18. 1986 - Complete hysterectomy - uterus, cervix, and ovaries taken at age 32 shortly after birth of second child. I never had any bleeding or blood in cringe as you have indicated. I too had horrific pain during intercourse which eventually has led to none. Recurring endometriosis about every 8-10 years. Last in 2004 at 50 years old. I was originally told then that it was likely just nerve pain from scar tissue as I was getting a bit old for endometriosis...BUT...pathology proved it was endo. Again pain started in around 2011 and 2012 at or beyond the vaginal cuff left side where always located in past after the hysterectomy . Once again I was certain it must be endo. Jan 2014 laparoscopic surgery to remove all suspect endometriosis but no endometriosis in pathology report found in tissue removed. Intense chronic pain continues so still investigating further as suspect small calcified growth found in ultrasound done indicates when wand used in the transvaginal pelvic ultrasound nears growth it causes intense focus of pain. MRI findings done after show mild enlargement of the piriformis muscle and moderate atrophy of the left inferior gluteus maximus muscles (and not seen on recent MRI just over a year earlier. The radiologist reports that the gluteus maximus muscle may being impinging on the pudendal nerve as the constellation of findings raises this possibility. Being referrer to Neurophysiologist to investigate the nerve impingement possibility. My gynecologist is ordering another transvaginal pelvic Ultra sound for September to compare to earlier US and see if size of the calcified growth is enlarging and if same findings of focus of pain will occur. He does believe that my vaginal cuff is so hyper sensitive that after all investigations are complete and all ruled out as causing the pain...that I may consider having the entire old vaginal cuff excised as it may contain nerve bundles from scar tissue formed after many excisions of endometriosis which seemed to form around the left side vaginal cuff, etc over the years.. I would basically get a new vaginal cuff...but the worry there of course is scar tissue will form again and likely cause more nerve pain in the new cuff over time. It is unlikely at my age there would be any more endometriosis.............but the pain feels like what I felt when it was proven in pathology to be endometriosis. Endometriosis does not disappear with even complete hysterectomy as thought to be the case back in the later 1980's. don't let anyone try to convince you that is the case. Endometriosis is a horrible painful disease. I found best treatment was find the endo and excise it. In the past I would get relief after endometriosis tissue found in MRI was excised....at least for another 8-10 years. Get yourself a really good gynecologist that believes what you are telling them about your own body nobody knows better then yourself!! Take Care!

  • Thanks for replying to my post, the gynaecologist I am seeing has a good reputation and did my original surgery so keeping fingers crossed. Sorry to hear of all your issues, I suppose one thing that helps here is knowing your not alone.

    You take care too


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