Health Organization for Pudendal Education

This is from another forum. This lady had vaginal burning, clearly nerve pain, clearly the pudendal. We get diagnosed a lot with vulvodynia, it makes sense since they can be related. anyway, she was cured by taking Lyrica after 3 months of pain...she must have taken it for a long while, but it worked for her!

"Hello everyone

Three years ago I developed chronic burning pain which came on literally overnight. On a scale of 1 - 10 it was nearly always at a 9. After scouring the web, finding this website and seeing a gyni I knew I had vulvodynia. I was beside myself, was in the depths of depression and unable to work. My gyni prescribed lidocaine and amitryptoline, both of which didn't work. I also tried acupuncture but that wasn't much help either.

I finally decided to see a private pain consultant. O my he was my saviour - finally I had found someone who could sympathise and understand my agony. He immediately put me on 150mg of lyrica, kept me on the amitryptoline and gave me a supply of tramadol for emergencies (I only ever needed to take them once). Within 48 hours the pain had all but gone. In my second week he increased me to 300mg and I had no pain at all. In total I was on 300mg lyrica and 50mg ami.

Unfortunately I did have some side effects such as a dry mouth and weight gain but this was a small price to pay.

I was petrified that if I came off the meds the pain would come back. however, with the support of my gp (who incidentally admitted she didn't know much about the condition and was as pleased as I was that I had found something that worked), I have weaned myself off the lyrica over a long period of time. I am still on 10mg of ami and that is only because it helps me sleep!

Thankfully the burning has not returned. However, now that I know that something has worked for me it is no longer a fear, if it does come back I'll be straight back on the pills - let's face it most people have to take some form of medication for their ailments.

I really would encourage anyone to give it a go, it might work for you too. My heart goes out to you all, I honestly don't know how I got through those initial months I really had got to the point where I had virtually given up. I haven't been on this site in a long while and was really surprised to see how much it had grown in numbers, there are so many of you all suffering x"

taken from here: http://vulvodyniasupport.forumotion.net ... ht=3+years

just to add..from her own words, she took lyrica for 3 full years and tapered off the drug very very slowly

Mary Jane,
Thanks for posting this success. We are always glad to hear about a way to gain relief and give hope to others.
Janet

Good to know, thanks! I have been taking 300mg of Lyrica daily for 1.5 years and I always wonder when/if I will stop taking it. I don't really mind it, but this gives me hope that one day I might stop it altogether. Very cool.

I asked her how long she took the medication....she said she was on 50 mg Amitriptyline plus 300 mg Lyrica for 3 years..she says she hasn't had the pain return 6 months now ! in her case the pain came out of the blue.....however I wanted to post this as feel there are not enough positive stories on the internet.....most of them are in the range of "I have had pain for 20 years" .... but we need to be realistic about neuropathic pain....no one knows how it will evolve, but we HAVE to keep trying !!!!

Hi
I had hysterectomy June 2013 and immediately suffered with excruitating pelvic pain, stabbing, burning completely life changing and unable to work or function! After months of numerous specialists and medication using my mobile phone as I couldn't sit to use laptop I scoured the internet and by chance stumbled on pudendal nerve entrapment!!!!i literally cried in relief that whatvid been describing to the medics was there's in black and white as a real condition. I saw mr Greenslade in Bristol in nov 2013 and met the Nantes criteria for bilateral pudendal nerve entrapment. I had surgery 7 weeks ago and surgery revealed that both sides were in a mess so felt pleased I had made the difficult decision to have more invasive surgery.,I am feeling positive and one of the lucky ones that managed to get this diagnosed within 7 months.
It was a result of these forums that I found this condition and the stories I read from women across the world although heartbreaking were positive and empowering. We need to keep communicating and educating ourselves and others about this horrendous condition. I was fortunate my GP although by his own admission had never heard of PN he embarked on this journey with me reading and digesting web pages id printed for him about this condition.
I know from reading so many posts that other people have had this condition for years and years with little or no help and that is scandalous! We must keep positive and never forget we have a right to be taken seriously and treated with care and compassion. If I can help in any way or give any more info let me know.

Well done for educating your GP. Luckily my GP has been my rock and knows more than most consultants!

That's so good to hear· I think it is fundamental in the recovery journey we face dealing with this condition if your GO is supportive· Thankfully after initial cynicism and disbelief he read literature I had printed for him and became a convert and hugely supportive· How is your recovery going and how are you feeling?
I'm 9 weeks post bilateral tg surgery Nd truthfully have probably overdone if this week· Have been using my local pool several times this week to do gentle exercises, only time I am pain free and suffered last night and today with a huge flare up so back in bed on tramadol!! Hopefully better Tom?
Best wishes and be good to know how you are getting on?

Should read Gp predictive text!! Joy!