Could a TVT cause Pudendal damage

[calluna]

Hello again Karen

So sorry to hear that things are still in such a mess, that's really not good.

I can really sympathise with you about the toilet issues. I know about going to the toilet every hour or two at the absolute most, and always having to identify where the loo is, it is a standing joke here. Accidents happen every day, pretty much, and it is a bit of a nuisance. With regard to bowel control, I have got better with that, knowing that I do have some control even if I cannot feel it, but accidents still happen.

Several suggestions. Have you managed to get a referral to one of the PN specialists yet? Although other consultants are now starting to have at least heard of this condition, these doctors on the list are much more experienced.

Have you still got the TVT sling in place? And if so - have you thought of having it removed? Mesh removal helped me considerably.

Have you got any psychological support? You should be able to access this through your GP. Longterm problems like this can be very challenging, and you shouldn't have to be coping with this on your own.

I have a rule, in that I never turn down any help that is offered to me. Counselling? - yes please. Support group? - yes please. Something like this can be socially isolating - it isn't very easy to discuss it with your friends. I've found the knitting group at the local pain clinic to be very supportive. I know you don't have pain, but numbness is difficult to manage too, and you need support too...

Another thought - I am sure that resources vary from place to place, but just to give you an example - here in Wiltshire, I have just discovered that I can access free psycho-educational courses on a whole range of issues which include managing longterm health conditions, I shall be going on a couple of these courses in the New Year. I would expect that similar resources are available to you - I was told about them by the counsellor at my GP surgery. I had no idea that there was so much help available.

I hope that some of this might be useful to you. Hang on in there!

[KarenM6]

Hi Calluna,

Thank you for your message, it's really appreciated, as sometimes, it feels so lonely, because no-one can understand what it's like.

I haven't had a referral to one of the PN doctors yet, as my doctors don't seem to bother, but, I was going to have a chat with my gynaecologist to see if she will refer me instead.

I'm a bit wary of having the mesh removed, in case matters are made worse.

I'm not aware of any type of support that I can get, no-one has explained that there is support out there for my situation, but I will make inquiries.

I'll put an update on here, as and when, but sometimes I feel so low that I don't want to do anything.

Many thanks again,

Karen

[calluna]

Hello again Karen

Please do stay in touch. I know about not feeling like posting, believe me. There have been long periods when I've not said anything on here because I just haven't been able to face it.

I know your situation is not the same as mine, but please know that you are not by yourself, that you are not alone.

With regard to a referral to one of the PN doctors - could I suggest that you go to your GP and ask for a referral, rather than to your gynae. The reason for this is that it will be much quicker, because the way the system works is that the referral will be sent back to your GP anyway. So best just to ask there in the first place.

With regard to support - please, just ask. It is there for you. There will be counselling provided by the local psychology service, this will be at your local GP surgery, and it is an excellent starting point. You can just ask for an appointment to see a counsellor, you shouldn't need to see your GP first. I had to wait three weeks to be seen, that was all.

Please, feel free to PM me.

[KarenM6]

Hi Calluna,

Thanks for the advice, and I will certainly see my GP about referring me to one of the PN consultants, would you recommend anyone in particular?

I'll definitely stay in touch.

It is so good to know now that I'm not alone.

Thank you so much for your support.

Karen

[calluna]

If memory serves, you are in Suffolk? - so probably one of the consultants in London would be best for you. That would be Dr Andrew Baranowski or Dr Natasha Curran. Their contact details are here.

Please keep us posted as to how you get on - some GPs are more helpful than others. The way I asked was just to say that I'd found a list of consultants who had an interest in pudendal nerve conditions (or something like that) and please could I go and see one of them, preferably the nearest as travelling was a bit of an issue. Dr Greenslade was out of area for me, but not too far away. My GP was jolly pleased and said what a good idea, that at the very least he (my GP) would be interested to hear the consultant's opinion on the general situation (which really was a bit of a mess at the time) and what might be done to improve things. He sorted it out online and gave me a printout with a password and a number to ring, I took myself off home and rang up straight away, and there I was with an appointment to see Dr G in due course.

I hope that you have a better day today.

[KarenM6]

Well remembered Calluna, I am in Suffolk.

I'll ask my GP about referring me, as soon as I can get an appointment with them.
Do you think contacting the consultants directly first, would be a good idea.

I will keep in touch, with any news, as and when I get it.

Thanks for your support

[calluna]

Well, I didn't contact the consultant first - I just went to my GP. I have had all my treatment through the NHS, and they have looked after me pretty well I think. But I'm sure you could ring up and talk to their respective secretaries if you wanted to.

Don't forget about counselling!