It all started in 2008 after i had urethral stretch for frequency and bladder fullness. I had the same symptoms in 1996 and 2001 and were resolved both times after urethral stretch was performed. In 2008 when symptoms started again, and no infection found, i had the procedure again and as i was 51yrs at the time my uro thought menopause
might have be causing the problem. After the procedure instead of being resolved pelvic pain, bladder pressure, frequency, trouble voiding became worse and i was in so much pain i could hardly stand to work. I went back to my uro and he sent me for urodynamic tests which showed a slight hesitation in voiding probably due to the pelvic floor. He put me on a couple of bladder relaxers, but side effects were too bad and only helped with frequency, not pain. I have no burning when voiding and was sent to pelvic floor specialist who couldn't find any tightness, but i continued for 8mths and at this point she thought i needed another uro opinion as i was making no progress, only getting worse. By this time vaginal ache had started and i saw a prof. of urology at the Royal Womens Hospital who did cysto with hydro to check for I.C., but nothing but a perfect bladder which was on the large side. She put my on Endep (amitrip) 10mg and suggested i go back to pelvic therapy even though it was not working. I then went to my Gyno who found no pelvic floor tightness, but an ovarian cyst on my left ovary was found after c.t. scan and i wanted him to to a laparoscopy to see what he could see as i had c.t. scans, ultrasounds and was getting no diagnosis.
He did lap and as i have had 3 c-sections and hysto with lots of endo stuck to evey organ 10yrs ago, he suspected adhesions would be a problem. He said i was a mess with adhesions every where bowel stuck to bowel, pelvic area and he couldn't even see the ovaries, so he did vaginal ulrasound but no cyst showed up. He assumed that the adhesions, even though surgery was years ago could be contributing to my pain. I could no longer work, standing, walking makes it worse and laying down with a heatpack is the only time i get some relief. My G.P sent me to a pain specialist who tried accupuncture and increased endep to 15mg and thought i had visceral pain, as i didn't have the typical nerve pain, burning, stabbing, numbness, it just felt like my bladder and urethra was going to burst with pain and once that started, vaginal ache followed. I did well on 15mg for about 12mths, and late last year was diagnosed with stage 4 thyroid cancer with spread, but not related to pelvic pain. I had treatment and while i was going through that, the pain seemed to become less. Maybe my body was just giving me a break so i could deal with the cancer. Im doing ok and having regular check up's but this pelvic pain is destroying my life..... or should i say i have no life as most of you would understand. Im single and feel very isoloated, cant even walk 20mins at the moment and sitting is a problem once vaginal pain starts. Pain specialist said i could try pudendal nerve block, but there is no evidence that its nerve related and it wouldn't be a permanent fix and could make pain worse. I think that when i had the urethral stretch nerves were damaged and perhaps the adhesions are not helping. I dont know what to do next, my g.p. said i can go up to 20mg endep, but i already suffer constipation and i have heard weight gain is a problem with this drug and that would cause more pressure on my pelvic area. Please can someone help!!! Is anyone on endep at higher dose than 20mg and what are your side effects? I have tried movicol for constipation, but for some reason i feel more pain after taking it, or maybe just a coincidence ? I also cant tolerate any of the strong pain meds like tramadol, oxycontin ect. and my pain specialist said even if i could tolerate them, i would end up going up higher in dose until nothing helped my pain.Thanks for reading my very long story.
