Advice requested please re prolapse repair surgery. Can it worsen pre-existing pudendal neuralgia? Does anyone have experience with this?

[Allunavailable]

I have had PN for nearly a decade. The pains were initially appalling. However, I learnt to live with the issue and at times could almost ignore it. I had a sudden prolapse a year ago after a period of inactivity due to having to rest after an operation. As soon as I returned to my normal activities, I developed a cystocele. It was incredibly painful as if someone had my bladder in a vice. Once I had paid to have a pessary fitted, the situation calmed down a lot. However the symptoms of the PN have radically changed. I am not happy with the pessary , the cystocele is now grade 2 and i am seriously considering having corrective surgery. BUT I am terrified of this making my PN worse. Does anyone have experience which I might find relevant to my decision-making?

Also, has anyone had prolapse surgery and (after healing) been able to return to an active life (gardening, exercise, housework etc.) without the surgery failing?

I'm worried that I might go through an operation just to be in the same (worse?) position several months/years down the line.

Personal experiences would be much appreciated please. Thanks.

[Allunavailable]

Does no one have any help to offer me?

[Tarotmumma in reply to Allunavailable]

hi I am so sorry no one has had any advice for you I am waiting to have surgery for a stage 4 bladder prolapse and after reading all these things I am terrified! So much can go wrong it seems! I had an anterior repair about 20 years ago which never really worked now I have almost complete bladder prolapse so to be honest I don’t think it helps for long. Think you really need to have a long conversation with your gynaecologist and go through pros and cons which there are with any op. You don’t say how old you are I am 66 and I was offered an operation to stitch it all up so i could not be sexually active ever again or risk this big operation which has so many problems for a log of women. I am still unsure what to do so I can’t advise one way of other. Hope you make the right choice for you! Keep asking the questions until you get answers from doctors

Good luck

[Allunavailable in reply to Tarotmumma]

Your kind reply was very much appreciated. I was saddened by the lack of advice. However, I guess it just illustrates the enormous lack of in-.depth understanding within the medical profession and hence us, it’s “customers” , in the areas which this web site seeks to address.

The trouble with relying on consultants is that they can give contradictory advice! One (male private!) told me that I had a medium cystocele and could benefit from an operation. A few days ago, an NHS consultant (woman) told me it was only grade 1 and I certainly did not need an operation.

I know which one I’m going to listen to and she did say that she could never guarantee that she might not cut through the pudendal nerve in the course of an operation. I found that a very cautionary comment.

I’m going to stick with the pessary which she gave me. It’s been so much less uncomfortable than the one the male consultant had given me 6 months before.

Is there a link between the psychological and the physical even at the basic level of something so obviously material such as a pessary? All so complicated…….

Good luck with dealing with your challenges. Life is never simple is it?

[Tarotmumma in reply to Allunavailable]

Oh you are welcome I didn’t have all the answers though I’m sorry. These doctors have immense pressure on their time and skill these days we do expect a lot from them I guess.

Privately doctors seem to go with what makes them the most money! I saw a private one a few weeks ago he didn’t want to operate and tried two more (I’ve had about 6) pessaries which were £80 each on top of consultation it cost over £400! Anyway he used a gellhorn shelf pessary which was so painful and really hard it rubbed inside and as soon as I got home it fell out down the toilet! I also was totally incontinent with it I just peed all over floor through thick pads and clothes! I said never again I don’t want to see another pessary ever again.

They work for some people and good luck to them but nog for me mind has gone too far now so operation it is. It’s the nerve damage I most worried about its nog a nice thought being in constant pain for rest of my life I already suffer with fibromyalgia that’s bad enough! I hope the pessary gives you some relief for now at least. Do your kegals and that will help too if its only stage 1

Yes I do believe there is a link women have to go through so much in their lives and we still have to carry on regardless! I think get as much information from wherever you can and make your choices we are at lucky in at least these things are talked about nowadays which is what we need!

No life isn’t simple but it’s some we have to deal with. Will always answer if you need a chat 😊