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[Maryjane]

Well I got my diagnosis yesterday went to a top London pudenadal  specialist ,and I have Pudenadal neuralgia which is so painful it makes me have involuntary orgasms. It will be a case of chronic pain management , I have not slept for a month and any pills I seem to take I act violently to, I have only had four days of Prozac and in the night being sick, and completely shaking all over,   almost as if having a fit but I was aware ,I am loosing weight like there is no tomorrow, plus my peri symptons.

The drugs the consultant wants me to try are Gabapentin and Noratoxateine?'spelling. I am terrified of these drugs, I am also anaemic and can't keep down the iron pills. I am very mentally unstable and don't know what to do, I have got a counselling appointment next week, and I have just rung my sister-in-law to come and see me pronto.

I can't let my children know how I am.

[Greyhoundgal]

HI MaryJane

Blimey, that sounds pretty awful.  Did you tell the specialist that you don't tolerate medicines very well?  Can you not go back to your GP and get an urgent appointment with them?  I don't really know what to suggest to  you, just wanted you to know that there was someone thinking of you.......

[Sarah2]

Really sorry you are feeling like this.

May be a silly question but is the person you saw a consultant and are they recognised by other drs as being an expert? I know there are some people around who are more 'complementary' in this field.

Did your GP refer you to the person you saw?


I'd be considering another opinion because you seem to be really suffering.

[Maryjane]

Yes he is top of his field written many papers. I suspected the problem for the last few weeks and my uro/ gynae was making mutterings. I will be having a MRI neurography a.s.a.p. As there are only I think two of these MRIs in the country. I will be under him at the London Pain Clinic.

[CLKD]

You need to ask your GP for a community psychiatric nurse to visit regularly.  Someone you can chat with.  Or contact MIND or the Samaritans who may well have people in your area that could give support.  i remember being desperate for care but was advised to take extra Valium 

Your condition is not un-known.  It can be difficult to live with until it is under control.  If you are vomiting the body can go into shock with shakes and dizziness so try not to be too worried easier said than done I know ……. I think you ought to tell your GP who you visited for this diagnosis !  ahhhh - is he recognised by the NHS? 

Did you ring your GP?

[Sarah2]

You need to be a bit wary sometimes of some doctors who say they are 'experts' if they are not recognised by other well qualified consultants. I don't mean they are not doctors, but unless they have a long track record of doing that kind of treatment in mainstream NHS I'd be cautious.

How did you find him?

Was he recommended by your consultant gynae or your GP? Is he writing to your GP because he ought to be, telling him your treatment plan.

Are you paying yourself for your MRI or is it being funded by private insurance?

You can see what I am saying.....I would hate to think you were being ripped off because you are so desperate for some relief.


I think you ought to go straight to your GP and tell him how you feel and what has been prescribed. You are potentially mixing a huge range of drugs used for pain and anxiety/mental health.

[Maryjane]

He is NHS I have decided to just take the Gabepentin. I paid to see him privately as I was getting so distressed with my symptons, and I am then going onto his NHS list. The scan he said I could have on the NHS, but I don't want to wait it is me  panacking I think.

When I go onto the NhS he would work along side his uro/gynae as she has a holistic approach to PN, the pills are first aid for the nerve to calm down, but I won't take the anti d one. I just want to be able to sleep, the Prozac has really messed my stomach up.he said CB therapy will help, he is hoping it is just inflamed and the medication will settle it down.

Yes please who do you know of. I am just so sore down there with the LS as well and three small prolapses. It is the Ovestin cream that really got things going, pain wise I was hoping it was just an allergy.

[Sarah2]

I don't know if I am allowed to mention drs names on here? I will send you a PM with the name of a consultant gynae- she is in central London specialises in vulval pain and vulval conditions.

[Maryjane]

Yes gp will have a letter.

[hummingbird]

Hi Maryjane,
Just want to send you a 
Sorry you are feeling so down right now. I can't really offer you any advice as I don't have first hand experience of your condition, but i have been in constant pain and discomfort for the past 2 And half weeks  myself with bladder issues due to the dreaded meno, and its starting to get me down a bit.
You have my sympathies and so do all the other ladies who are suffering at the moment.
Wishing you better days ahead xxx

[CLKD]

I'm glad that he is on the NHS and also that you have found someone who knows what to look for, above and beyond the 'usual' problems ladies suffer.  Let us know how you get on!