Pelvic Pain Support Network

So much pain after TOT + prolapse surgery 7 years ago

OMG! I have so much pain. I had a trans-obtural tape inserted for a bladder problem (the tape was threaded through my bladder and I had to go down for surgery to have it removed the following day (another one was inserted after I requested for it not to be redone) ) + a cystocele and rectocele (excuse the spelling) repairs. I have been in pain ever since. My bladder has prolapsed so badly again it is now outside of my vagina and constantly rubs, I have had at least 7 bladder infections in the last 12 months. I suffer with burning, pins and needles, constant pain from trapped nerve. I do not take medication because of the side effects. I am barely able to walk and I cannot sit. My Dr has referred me to Southmead Hospital in Bristol (I have been waiting nearly 3 months for an appointment) I do not believe I have much chance of being seen with the NHS having the problems it has at the moment and I suspect that another NHS surgeon will be reluctant to take on the problems. My aftercare was appalling and after 12 months of going back and forwards to the specialist after the surgery he sent me to a dietician (I was not overweight) and signed me off. I have a wonderful husband any other marriage would not have survived (and indeed many have not). We only had intercourse once when I bled really badly ( I was told to put my legs up, it would stop and was refused a visit by the on call doctor). I was in total shock for over 3 months when I went back to work. Three years ago after struggling so much I was retired on health grounds from my job. I now stay at home laying on the sofa. I struggle everyday, my health is deteriorating because I cannot exercise, I have put on over 2 stone in weight and have no friends, very rarely go out. If I had known what this tape would do I would have managed my future with my bladder leakage. It is a living nightmare, I am only 62 years old and I was fit and enjoyed life before this surgery but feel like my life is over.

2 Replies

Oh Scummy, you poor thing. I don't know what to say apart from the fact that you are not alone. I was also let down. A hysterectomy and repair after a prolapse has left me in constant pain. I have found that will a lot of my appointments I have had to be a complete pest, ringing daily and asking to be seen sooner. My persistence has paid off and I have been seen sooner. Please get on the phone to Bristol and make a fuss. I think we all get moments of despair, quite normal but horrid. So glad you have a supportive husband. Don't give up



I also had a TOT tape. It has robbed me of my life as well. If you can make it across the pond, Dr. Raz is the best surgeon for removal of mesh. I know what you're talking about being confined to the couch. I am now moving some and can drive for about 30 mins. I have had 15 surgeries for mesh complications. It started at 48 and I'm now 55. My husband is also supportive. I take the pain meds because they help me to move. It is unacceptable that you have to wait so long to be seen. And being dropped like that- makes my blood boil. I have had a pudendal interstim implanted and it has helped with the pain quite a lot. What a mess the mesh makes for us. You can ask me anything, I want to help if I can. I'm so sorry for your pain and suffering. Your life isn't over yet, but you do have to fight for it. Don't give up.


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