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[CLKD]

I talked to an Indian Gynaecologist many years ago: apparently when wearing the sari they don't have knickers on and they carry a special handbag - each time they go for a comfort break they wash after with warm water.  Maybe bidets aren't such a bad idea after all 

Anyone have one of those new fangled loos that have a 'wash after use' button ?

[Bath mum]

Thanks so much...all great suggestions...that I will follow up..

[CLKD]

Let us know how you get on!

[Bath mum]

Hi all. the pain seemed to die down a bit but is now back with a vengeance...I am trying to get a referal to a specialist in .bristol. I think it could be a pudendal nerve problem..Judith..I am pleased to hear you can work etc...and that the meds seem to help..I have just started the nortriptoline...but at the moment can't even walk or sit without severe pain..any help advice? I am a bit desperate today...

[ancient runner]

Not an expert on this at all, but have you taken some painkillers to tide you over until (hopefully) the prescribed meds kick in and your appointment is sorted? Feeling for you.

[Bath mum]

thanks....yes, i googled to make sure it was ok....so i have taken some....am out of bed at least!!!! and thanks for your concern....i appreciate it...

[Judith57]

Hi, I really feel for you as it is the pits and has severely compromised my quality of life. Just got home from work and have had a fairly bad day today with the pain, I can no longer even contemplate sitting on the train, just as well it is only a twenty minute journey. There is a specialist team in Bristol who offer surgery for pudendal nerve problems so I assume you are trying to arrange an appointment with them. There is also a support group for PN patients called HOPE, you may have already found it. I tend to stay away from it as I find it too depressing. Let me know how you get on x

[Bath mum]

Thank you Judith57...I have an appointment with the Bristol team, for the 7th July. I got referred yesterday, by my usually jolly GP who started asking me if I had insurance against my income.... I also agree about the HOPE webpages...they scared me a lot and I thought..I don't need to hear all this! A specialist GP I saw said that she had seen this after infections before and that it should go... That was a month ago. I suppose that is why I am clutching at your story for a positive outcome....a future where I can at least work and get out of the house. I have two lovely young kids and am not really even being a proper mum at the moment... I have started on Nortyptolyne this week, and am waiting for that to start working. How did yours start? if you don't mind me asking?

[Bath mum]

Sorry Judith57 I saw that you did mention that yours started post an infection too. I also read some of your old posts, and can see why you wouldn't want to revisit last year at all...I am only 46 and in peri menopause...I started off thinking it could be hormone related, but alas I think its far more nerve related now..I think we ladies just 'know'...

[Maryjane]

Bath mum.......as you no I have/had PN/PGAD/bladder wall infection/vulvudynia......all of which is either caused by the PN or the PN has caused it all chicken and egg......not being at all big headed but I have a wealth of knowledge on PN ( my mother also has it ) and under no circumstances let the Bristol team go anywhere near you with a knife......they will quite likely say the problem is your bowel causing the PN issues and suggest they operate, just be very aware.......PN surgery is not offered on the NHS because it is deemed an insufficient outcome.

If you want the chance of a correct diagnoise then I would go to France to Professor Robert in Nantes, as he is the world leader on this.....and he has told the Bristol team to stop using steroids in the nerve blocks as it causes extra nerve damage ........don't want to put a downer on it for you.....but just want to warn you.

[Judith57]

Mine is a very long story but it was all kicked off by a UTI after sex, it didn't really clear up and I had a lot of vulval and clitoral pain. I then think I got nerve damage by sitting in my chair at work pressing down really hard to numb the pain. The final straw was when I went to see a physiotherapist recommended by one of the specialists, she told me to try and wean myself off my donut cushion slowly, anyway I went back to the office and spent the whole morning without my cushion and then everything started fizzing and tingling as though I was sitting on an electric fence and sadly I think that was when the nerve got trapped. I have also developed a troubling rectocele now  .

Crikey, my old posts must have scared you, this time last year I was suicidal. The other lady posting on this thread, Mary Jane, was a huge support to me. You will know that we trod the same treatment path for a while. You are right, we know our own bodies and can distinguish between nerve pain and pain caused by a lack of oestrogen. Let me know how you get on x

[Bath mum]

Thanks Judith...do you think I shouldn't see the Bristol team? also, I cannot even think of getting to France in this pain....They don't use steroids in diagnostics do they? i have just been to A&E because I thought I was going to pass out in pain...of course they gave me a different pain killer...thats all...but the .dr there Suggested it was pudendal neuralgia..and recommended the London team...this is so distressing....my poor kids and husband don't know whats happened to me...I think my mum probably has this
too...

[CLKD]

Did the Dr in A&E offer to write the referral letter? 

[Bath mum]

Hi, no because I told her .i was already referred to the Bristol team. Everyone on other forums spoke quite highly of the Bristol team....which is why I'd looked them up...plus I am in Bath so I can get there easily...but of course the quality of care is the most important thing. I have to calm down a bit though..I only have the paon in my clitoris at the moment....and I have only been taking notryptolye for three nights....i have to give that time to work too...

[Bath mum]

Judith....do you know how or why your intense clitoral pain went? And how long it took?