Could a TVT cause Pudendal damage

[KarenM6]

Hi everyone,

Just a quick update, my appointment tomorrow has been cancelled, and rescheduled for next Friday. I also have an appointment with a urogynaecologist at the end of August, and I've found out that it's a woman doctor, they seem pretty rare.
I will keep you updated once I've had the appointments.

Take care,

Karen x

[helenlegs 11]

Oh well, not that long a wait for the cancellation. Just be aware that not all urogynaecologists are PN aware, hopefully yours will be however.
I would say the crucial symptom with you is the numbness and total lack of feeling. I am not medical and always have to look things up but I would wonder how any doctor could diagnose anything other than a pelvic nerve problem with that symptom.
I hope that I am worrying needlessly, my diagnosis and treatment seeking experiences haven't been great I suppose, but then I have never seen a urogyaencologist either.
Hoping you are on the way to some effective treatment Karen, thanks for letting us know.
Take care,
Helen.

[KarenM6]

Hi All,

Just thought I would drop by to update you with the latest, after having several consultants appointments and going through loads of tests, I am not really sure that I am any further forward in finding out why I have no sensation in the pelvic floor area, still not knowing when I need to empty my bladder or bowel. One of the tests I had amongst the many tests was a pudendal nerve study, and the report indicated that there was no response from either of the pudendal nerves, which one consultant says 'this raises the suspicion of bilateral pudendal neuropathy', but the most recent consultant seems to think that it is just a coincidence that I became numb at the same time I had the TVT and that it is rare for both sides of the Pudendal Nerve to be affected at the same time, but is referring to a colleague to see if they have had any experience of my symptoms in the course of their work.
I am trawling the internet for help to find someone who can help me, someone somewhere must have heard of symptoms like mine after having the TVT procedure carried out.

The 'bowel training' seems to be going ok. The physiotherapist says that although I can't feel anything, I am squeezing when she is checking the biofeedback, which is some good news I hope.

Karen

[calluna]

Hello again Karen

Glad to hear that the biofeedback is going well - I too have the situation where I cannot feel what I am doing. But, as you say, good news to know that things are happening despite the lack of sensation.

I do still think that you will get your best help from a PN specialist. The usual procedure would be to see your GP and ask for a referral to the doctor of your choice - I'd say that the report about the pudendal nerve study is very relevant.

[helenlegs 11]

I can't see how anyone could ignore such a dramatic result with the nerve test Karen. Seems 'nailed on' to me. Hate that expression just apt !!
I am in the same boat with regard to lack of feeling. I am in the 'happy' position that it only relates to bowel movements and I have additional pelvic pain when I do need to go. I'd rather that than too many accidents
Glad something is helping
Take care,
helen

[KarenM6]

Hi everyone,

Just dropping by for some help and advice, I have had some more consultant appointments and I have more or less been told that I have Pudendal Neuropathy, and when I asked about treatment to correct it, I was told that I would basically have to live with it because they weren't able to operate to repair it. I just want to know if that is true or if there is ANY chance of getting feeling back.

Does anyone know of any treatment or of any Drs/Consultants who would be willing to see me?

Please somebody help me, I am at my wits end, and have no where else to turn.

Karen

[calluna]

Hello again Karen

There is a list of UK doctors who specialise in PN on the homepage of this website. There is also Dr Natasha Curran who isn't on the list for some reason - she works out of UCL and also the National in London.

If I remember correctly, you live in Suffolk, so it would make sense for you to see either Dr Baranowski or Dr Curran. The way to do this is to make a note of their names and hospitals, go to your GP, tell him/her that you've discovered there are some consultants with a particular interest in PN, and please could you go and see one of them. (Excellent that you've got a diagnosis, by the way! - not good that it has happened in the first place of course... )

By the way, there are surgeons who specialise in sorting out problems with mesh - fixing other surgeon's mistakes, basically. Even when people have been told that nothing can be done. So please don't give up hope.

[nyt]

Dr. Robert's in France has done numerous sling removals if you need your sling removed. I lost my voiding sensation when my sling was put in almost 6 years ago plus have lost alot of sensation around my clitoris which right now is mostly pain. I had two surgeries to remove my sling and once the sling was out the incredible vaginal pain I would get when the hubby and I would try to have intercourse was gone, thank goodness. I can't say that I've had any improvement in the sensation area, still don't feel when I void and still a numb clitoris. But don't give up hope! There are doctors out there that specialize in PN and have experience with dealing with sling complications.

[calluna]

I know of some in the UK who specialise in sling removal, via another website/forum about mesh problems. None of them seem to be PN specialists, though, at least they are not known to us as such. I don't know if my surgeon (who does know about PN) and specialises in sorting out mesh problems, has done any sling removals.

Anyway, from the list of doctors in the UK specialising in tvt removal -
Miss Sohier Elneil BSc(Hons) MBchB MRCOG PhD - London
David Holmes BSc, MD, FRCOG Gynaecology, Urogynaecology, Urodynamics Cheltenham Hospital

There are others in Scotland, Sheffield, Newcastle, Bristol, and two in Oxford. Just FYI really.

Excellent to know that Dr Robert has done this - if anyone knows about PN, that's him!

[KarenM6]

Hi all,

This is the first chance I have had to post on here for a while, and a lot has happened.
I have had lots of appointments to see various consultants, but am still no further on in finding out why I am numb, but it has been confirmed that I am suffering from Pudendal Neuropathy, and that it cannot be repaired, but merely managed, and must live with this for the rest of my life, I now have to go to the toilet every 1.5 to 2 hours, as I can not feel when I need to empty my bladder, and I have to use an anal catheter every day, so there is less risk of my emptying my bowel while I am out, if I do anytime, I need to know where the toilets are wherever I go.
I am at my wits end, I am having no quality of life, at all.

Can anyone suggest anyone I can talk to, who might know if repairing a damaged Pudendal Nerve is possible?

Please help me, I can't work (I lost my last job due to my problem), I can't have a social life, and I don't have a sex life either.

Karen