Hi I have Fibromyalgia and was diagnosed with Vulvodinya, has anyone else been diagnosed with this? If so how do you control the pain?

[Black_Cat1]

Vulvodinya

[FROSTY25]

Yes I was diagnosed with vulvodynia several years ago.Since then I have tried so many different things - my only relief comes from ice packs, and heat treatments..... I wish you all the best...

[Black_Cat1 in reply to FROSTY25]

Thank you!

[Konagirl60]

I was incorrectly diagnosed with vulvodynia when in fact a large pelvic nerve that enervates the vulvar area was being pinched in three spots.

On what basis we’re you diagnosed with vulvodynia? Do you have an infection? A rash? Is it very itchy there? We’re swabs taken and sent or culture?

[Black_Cat1 in reply to Konagirl60]

Hiya I was swabed no infection, it can be itchy at times but it's mostly painful.

[smg60 in reply to Konagirl60]

I was also incorrectly diagnosed with Vulvodynia and then I.C. Eventually diagnosed with a bladder prolapse and had surgery for that (minor - in hospital only one night). No pain for a few months, then it came back. Tried various painkillers, then saw a specialist (urogynacologist) and she prescribed a muscle relaxant 3 times a day. At the time I was on 2300 mg Gabapentin per day as well. Pain free for about a year, weaned myself off of the Gabapentin. Eventually the pain came back. I am on CBD/THC which seemed to help, but lately, the pain is returning. Every time I pee, my vagina feels like it's on fire. The Dr says it's like my pelvic floor muscle is"spasming" and urinating sets it off. When you said you had a large pelvic nerve being pinched, I was hoping you could tell me how this was fixed? Or has it been fixed?

[Konagirl60 in reply to smg60]

I had severe pudendal nerve entrapment. My right pudendal nerve was stuck between two ligaments ( it had adhered to a ligament ) and it was pinched in three spots.

I had ‘ decompression’ surgery and within three months the burning pain was gone.

It saved my life and it spared my sanity. The doctors in Vancouver, Canada abused me, they did not listen to anything I had to say, they dismissed me and I was incorrectly diagnosed and mistreated. They said I had vulvodynia and cyclothymia. Utter nonsense!

No medicine helped my pain. At one point I was on so many sedative meds that I lost cognitive function. I’m sure the lack of pain control contributed to my brain deteriorating.

I’m 12 years post op and my daily pain is 5/10. I only take meds at bedtime. I’m lucky the brain is neuroplastic. I still get flare ups and I know my limits.

[Konagirl60]

Have you ever had any metal devices used on you during surgery. They can migrate and cause pain.

You might benefit from Compunded low dose Valium Lidocaine vaginal suppositories.

Have you tried CBD?

[Black_Cat1 in reply to Konagirl60]

No surgery, have already gone down the cbd route and have used lidocaine for ages, haven't really though of valium 🤔

[Konagirl60 in reply to Black_Cat1]

Your doctor should have thought of the suppositories not you. I’d suggest a trial to only use at bedtime.

[Robinsonred]

I am in US and have every treatment know n to man.I am 77 years old and have had vulvodynia fo 37 years.I also have neuropothy and Fibromyalgia.nothing has ever helped me long term(even surgery)I am now on pain medication.

[Black_Cat1 in reply to Robinsonred]

Hi Thank you for your response, I guess pain medication is the way to go in the end. Which one do you take I've just started Nortriptyline

[Robinsonred in reply to Black_Cat1]

I have been taking cymbalta and Lyrica ,But I am having a bad flare now so I have been taking Norco,This is a prescription pain pill.I just don't think there is any help out there Doctors just don't know what to do with these conditions.

[Black_Cat1 in reply to Robinsonred]

I would have to agree with you.