Gina- You might try this site. There are some Physicians who volunteer and answer questions there. Perhaps they have a referral for you, or can answer some of the medical questions you have. Sounds like you have been through so much. Hope you get the help and support you deserve.
-- MicheleAt Thu, 14 Oct 1999, Gina wrote: > >Hi everyone, >I found this board through a long series of links originating at >hystersisters.org. I am 36 now. When I was 18 I had PID so bad I was >hospitalized and it formed scar tissue throughout my pelvic area (yet >didn't affect my life one bit as far as I can remember). I have been >sterile since then. Then in 1987 I had emergency surgery to remove my >gall bladder and appendix (I had gall stones which had moved to the >common bile duct, which is normally fatal I'm told). I almost died, but >lived, with an 11" long scar that looks like a railroad track across my >abdomen. (This was before laser surgery I guess). >I have always had painful monthly periods for as long as I can remember, >probably due to the PID scarring. I also had ovarian cysts periodically >with my cycles. I had wanted a hysterectomy at age 25 because of pelvic >pain and problems, and since I was sterile anyway, why not. But no Dr. >at that time would do it because of my age. >Recently, the pelvic pain became so severe that monthly ultra sounds >were done to see why, and they found numerous growths around ovaries, >pelvic area and inside uterus. An emergency surgery was performed >8/12/99 for a laprascopic vaginal hysterectomy, it took 5 hours because >they had to remove the extensive PID adhesions 1st. >2 weeks after that surgery I had such severe pelvic pain and right side >pain, and had been in the ER so many times, and once admitted just for >pain management, that they decided to do a second surgery and removed >both ovaries and tubes, plus massive adhesions in my upper right abdomen >(from the '87 surgery) which had wrapped around my bowel and attached to >organs in that area. >I was in bad shape after this second surgery, started to get pneumonia >but fought it hard, and my recovery in hospital was much longer. Even >the morphine did not help the pain. But I eventually went home after 4 >days, feeling I could rest better at home. >I am now 4 weeks post-op from that 2nd surgery. My surgeon--even >knowing I was prone to adhesions--never discussed any type of prevention >technique, nor any type of follow-up to prevent adhesions. I have since >learned what they are, that they can sometimes be prevented, that there >are exercises that sometimes work if started immediately following >surgery, etc. I didn't know any of this til this week. >I now have adhesions again, only this time I suspect they are >interfering with my bladder and bowel functions. I feel severe pain and >pressure on my bladder, vaginal canal and color. I had an internal exam >last week and my vaginal canal inside is fine with no prolapse. My Dr. >referred me back to my surgeon who pretty much washed his hands of >me--neither Dr. at this point wants to see me again, or follow-up on >this at all. >In the meantime, I am not having normal bowel movements: just diahrea >periodically, or pinched stools. I have tremendous bladder pain >constantly, yet have no infection and have no trouble going--I just >can't expel everything in one shot so end up going every 5-15 minutes. >This keeps me up all night so I can't sleep. I constantly feel the >pressure on my bladder. I also feel pressure on my vagina internally >(it hurts to sit), and on my colon. I was given Urispas pills for >bladder, doc thought I was having bladder spasms I guess. It didn't >help the pain or pressure at all, but does seem to help with the >frequency a tiny bit. >I am nauseous all the time, and have to take zantac with every meal or I >vomit. I also am having severe stomach pain. I was scheduled to have >an upper GI test but when I went in this week, they refused to do it >because my bowels are backed up to the limit and they said the barium >would make it worse. They were quite upset and it scared me. Yet my >doc didn't think anything of it, he has prescribed laxatives. I don't >think he understands how much pain I am in, and how much pressure I >already feel inside. Laxatives, to my mind, will make it >worse--increase the pressure and pain. I know, I had diahrea all >weekend and was crying the whole time. >I have no fevers, though all of my lymph nodes are swollen and painful. >I am not anemic, my kidney function tests were fine, and liver functions >were a little elevated. > >Knowing all of the above, do you think I have a partial bowel >obstruction? Bladder adhesions? Vaginal adhesions? Is this something I >should wait-and-see, as my Dr. suggests? Or is this something worthy of >an ER visit? Would a laxative be safe to take? >Finally, I do have an appt. for a urologist in 3 weeks. I'm hoping I >can stand to wait that long! If not, I will go to the ER. If a >urologist does the tests, and finds adhesions, is adhesiolysis something >I can expect him to do? > >Up until the "simple" surgery on 8/12 my quality of life was great. Now >instead of fixing the monthly pain problem, I have been given more >problems which are much worse than the original one. >Gina