Pudendal Neuralgia, any one else? And, Oh, the PAIN!

[IamEarthymama]

After several different explanations by medics I have had a diagnosis of Pudendal Neuralgia, my symptoms fit this perfectly.

I have been prescribed galbepentin. The first night it worked well, I got some sleep for the first time in weeks.
However, although it isn’t as all-consuming as it was, the pain hardly ever leaves my body. I sleep in 1-2 hour bouts.
The worse thing is the “sensation”. My upper thigh is so sensitive, I can’t bear anything touching it, and it constantly feels sore or burning, while I have a dreadful pain in my groin and in my knee.
Ice seems to help on my knee but I can hardly stand the touch of it.

I have an appointment with a Physiotherapist on Tuesday.
I really need to get back to work , and at least be able to free my mind to deal with things online.

If you have any experience of this can you please tell me what medication helped and in what combination you took it?

I send heartfelt sympathy to you too!

[Olliesocks]

Have you seen a gynaecologist? You could discuss whether you a pudendal nerve block would be a viable treatment option for you?

[endofthelinefinally]

Gabapentin does take a little while to build up. Other choices might be Pregabalin, Amitriptyline. All are used for nerve pain and can take a few days to kick in. Different drugs work for different people. I can only sympathise, it sounds horrendous. I know someone who has a similar condition and she started with Amitriptyline without much success but is much better on Pregabalin. Report back to your doctor so that other things can be tried.

[IamEarthymama]

Thank you both.

I am really impatient as I run a small community centre and there is no one to take my place.
hopefully I can get in for a few hours next week.
I will be in touch with my GP on Tuesday, she said to give Galbepentin time to kick in.

I know we aren't indispensable but I feel a little that way at the moment

[Akire]

Have they not given any pain killers at all? While you wait for nerve medication to kick in?

[Dizzywizz]

The trouble with nerve pain is that normal pain killers don’t help. I get nerve pain with my ms, so I sympathise. I take amitriptyline and pregablin, which helps. As pps have said they take some time to kick in, often a few weeks. Prescription co-codomol helps a bit on top as well. Other things I find helpful are hot baths with magnesium salts, and heat pillows. I hope the meds start helping soon for you

[Dizzywizz]

The other thing to know is that meds for nerve pain can’t get rid of it, they only dull it. I read once they can give max about 40% reduction. The best pain relief I had meant my brain was so mushy I couldn’t function.

[IHaveToSay]

I have this. Took 2 years to get a proper diagnosis! I take amitriptyline, which helps. Pilates helps me too.

[kirtsyjl]

Hi @IHaveToSay can I PM you about this plse. My son's girlfriend is looking for treament

[Mumof228]

Hi can you all explain your symptoms please I'm trying to get to the bottom of my pain especially burning down below that comes and goes