Pelvic Pain Support Network
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TOT aftermath

In 2000 i had a hysterectomy and colposuspension support, unfortunately after a couple of years my bladder colapsed again. In 2010 I was fitted with TOT the operation was a mess - pierced through my bladder with tape, lost half litre of blood had to go down following day to have tape removed from bladder and reinserted. Now six years on I am still in constant pain. Have trapped pudendal nerve, chronic pelvic pain and lower abdominal pain. I refuse to take anything other than paracetemol and wil certainly not have any further surgery. I suspect my pelvic pain is to do with scar adhesions but having the corrected opens me up to further complications. I guess my high tolerance to pain is what has helped me through and I also attended a pain clinic which has changed the way I deal with and think about my pain. I am 61 and have no doubti will end up in a wheelchair as the years progress. I was not given enough information on this procedure and because I had never heard of it before I trusted the surgeon and did no research. I will never have another procedure done as long as I live. After my surgery the surgeon was rude and arrogant and teated me like a was an inconvenience. But I am not going to allow this to ruin the rest of my life, no matter how much pain I am in I will continue to do the things I enjoy. I may not be able to lug things around like I used to but I can still walk and get around. Now I know some of you will be thinking "Well good for you", but I believe that you only get one stab at this life and I see how lucky I am not to have been born into poverty, war, deprevation and many other awful things people have to go through. I am not religious, I'm an athiest. Yes I sit and cry sometimes and feel deppressed but I refuse to let this grind me down, I'm entitled to be happy. So if you have rad this and have not had a tape inserted "DON'T DO IT" - but if you have had a tape inserted I hope you can see your way through the pain and live as full a life as possible.

2 Replies

Hi Scrummy,

I admire your determination to make the best of this situation and to do what you can. Thank you for sharing your experience and for your caution to others. We try to encourage people to look at the evidence for procedures and ask appropriate questions before making a decision but I'm sure that most people like you "trust the surgeon and do no research". I hope it's becoming easier for people to question more now.


Hello Scrummy, I can so relate to your pain after a tot procedure. I had mine done in Feb. 2012 due to a prolapsed bladder and rectum. Not long after during the 6week recovery period I suffered intense itching and burning sensations under the vaginal wall and urethra. To add to this the pain down the left leg and a feeling this was to tight I couldn't empty my bladder completely. i was told at the 6week check up i shouldn't be feeling the tape and was discharged. i knew there was something not right with this so got a referral back to the surgeon who did this and explained to him how the pain was and these symptoms but he just prescribed a steroid cream and i was sent on my way. Remember thinking at the time how was this going to help when i cannot relieve this terrible itching and burning myself no matter what i tried. Angry that yet again i had been fobbed of i got my gp to refer me urgently back to him . By this time the pain was so intense I cried in pain and begged him to do something i cannot live with such pain and agony. He said ime sorry you are in so much pain with this he passed the buck and was referred to a female urogynacologist who said she would remove part of this tot to see if this would help. Well this was in october2012. This seemed to have helped a little to the point i felt i could wee a little better. But continued with this pain radiating down my left led from the buttock down. After joining a support group called messed up mesh i asked my gp to refer me to miss el Neil at the UCLH in London on the NH's. got a consultation with her in august 2013 and she removed the tot in the sept 2013. pretty quick hey. I explained to her about the partial removal i had back in oct 2012 but was still in such pain and discomfort and that this was ruining my life. After the surgery miss el Neil showed me photos of the tape and said this was put in uneven and to tight and she said that there had been no piece cut it was still in one piece so how the hell can the surgeon who said she had partially removed this tape from under the urethra when she had done absolutely nothing with it. tried suing the first surgeon who did this but as always they stick together on the NH's so nobody takes the wrap for this. To end this horror story of mine i continue to have pain in my rectum and such pressure and itching like there's something crawling in my bum and still 3yrs on burning vaginal wall on and of but i take pregabalin and amitriptyline to help though i don't think its nerve damage like they all like to assume i have felt in my own mind that literally this feels like physical damage to my rectum.


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