Nobody is listening

Have had pelvic pain since 1986; originally told it was all iny head then, but finally diagnosed with chr. PID 2 yrs later. TAH & BS followed and multiple ops for adhesions. All reasonably ok until 2010 when had posterior repair and TVT and then 2012 when had remaining ovary removed on advice of unfoccs study.

Asked them to take precautions because I'm prone to adhesions, but they didn't. They removed some adhesions to get to the ovary and advised that my bladder was stuck to my bowel and they couldn't devide them without the help of other specialties who weren't available.

Now I get the worst pain I've ever had, have problems pooing and weeing. I've been referred back to the urologist, but think I need someone who knows more about adhesions, but no one's listening.

I'm so tired of having to fight to be heard. Can anyone recommend a specialist in the South East Region, please don't say Oxford Pelvic floor as I didn't meet the criteria under the lavender system.

5 Replies

  • I'm sorry for you. Sounds like you're in the UK. Seems like many are in these forums so I couldn't help necessarily in recommending who to see but I'd say the internet is your friend. Look for someone with experience in pelvic conditions. Do you have urogynocologysts there? That would be my first recommendation. Any specialist Physical therapy people who work work pelvic conditions in women?

    And research pudendal nerve entrapment because that is THE nerve that you have for urination and defecation. It also runs through the whole pelvic floor and the muscles.

  • Keep going. If the doctors don't listen try a new one. I've seen maybe a hundred between PTs and physicians. It's tiring but you have to fight for your health.

  • I have two problems; in that I've been here before and that I have been miss diagnosed a few times. When I had the PID I was told that that the pain was in my imagination for two years, because I wasn't rolling around in agony. When I had my first son I thought something was wrong, but was told not to be stupid; he was still born at 31/40.

    Thanks for the information on the pedendal nerve as I have had nerve pain since my TVT. I will mention it to my urologist as you say it might also be contributing to my other issues.

  • I suffer chronic pain from adhesions, surgeons and Drs will disagree they cause pain but believe me I know different. They have literally caused me to be disabled. I cannot do anything that requires bending, lifting or stamina. If you are on Facebook search adhesions, there are some good groups of helpful people in the same boat.

  • Thanks Shelly. I know how you feel. I've had multiple laparoscopic divisions of adhesions post hysterectomy ending up with an oophorectomy and division of adhesions that semi worked for around thirteen years. Problem is; I had a repair followed by the removal of my remaining ovary, which was advised because my ca125 was creeping up.

    I believe this has contributed to reformation of further adhesions; in fact the consultant who removed the ovary told me he had to leave my bladder attached to my bowel.

    I am having a vent of my frustration at being in this situation again and not being listened too.

    One thing the doctors and I are in agreement about is that surgery for adhesions is not always the best option, but I think and have previously been told that it will be inevitable again at some point. I would rather it be at a chosen time though. Not as an emergency.

    My apologies for the grumble, because I know there are people worse off in the world.

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