Vulvar issues

[coffa]

Any ladies out there have "issues" with the vulvar area? I have had MS for 15 yrs and never had any trouble.

Just over a month ago I developed pain, burning, itching, and swelling. Can't wear any clothes from the waist down, stay in my pj's.

Have seen my pcp, with no luck. And my gyn 5 times. Have tried all meds, oral and topical, rx's and otc....he is sending me to a specialist, she's a derma/gyn. Do not have an appt yet...still waiting for them to set one up but have been told that approx waiting time is 2 mo.!!!

Oh, I've also been tested for everything...all negative.
But have not had a biopsy...yet.

ANY and ALL suggestions will be greatly appreciated!!!

coffa

[samandmattsmom]

I have suffered with vulvodynia for a while now. It comes and goes....sometimes lasting for a few months at a time. I always felt this intense irritation, burning, etc., but many times there was nothing there when I looked. I have read on here where several women suffer from the same issues. Google it and see if that fits your symptoms. I hope that you feel better.....also, I went to the OB many times for these symptoms and none of the creams or anything phased mine either!

[coffa]

Thank you. I just looked up on Ask.com and found Mayo Clinic has info on it....

Doesn't sound too encouraging - since this has happened I've been slowly headed toward a slight depression... and one of the treatments for vulvodynia I guess is anti-depressants, which I'm allergic to.

It's very frustrating. How long do you have it for and without it? (when it comes & goes)?

[rdmc]

Sorry to hear you're having this.

Here's a link: Multiple Sclerosis is listed as a possible cause. Have you tried the meds for neuropathic pain (i.e. Neurontin or Tegretol)

http://www.srm-ejournal.com/article.asp?AID=8609&UID=

I'd make your doctor aware that MS can cause neuropathic pain in that area. I think sometimes the swelling/and or irritation can be from the docs trying one treatment then another, like yeast creams, or antibiotics...and this increases the distress.

Whenever I have an exacerbation, I get symptoms (pain and burning) in the pelvic floor and perineum. Spasticity can also affect that area.

Hope you get some answers.

[deescee]

Another site to visit

Also go to the NationalPainFoundation.org site and in the search area type in "vulvar dysesthesia." It lists multiple sclerosis as one of the neurologic diseases that can lead to vulvar pain.

Sadly, many doctors are not aware of this vulvar pain link to MS so you must insist that they take this into consideration. Two months can be a h*ll of a long wait when you are in pain. It can't hurt to call other clinics to see if they can get you in sooner.

Good Luck!!!

[rdmc]

Sadly, many doctors are not aware of this vulvar pain link to MS so you must insist that they take this into consideration. Two months can be a h*ll of a long wait when you are in pain. It can't hurt to call other clinics to see if they can get you in sooner.

Good Luck!!!

Just from personal experience, I prefer a urogynecologist to a regular gyn. I had two bouts of sudden and severe prolapse issues. Saw a urogyn, and he was very familiar with the problem, and with it's link to MS (MS predisposes one to prolapse.)

He's also very informed about spasticity. I have gone to his office due to pain/burning. After the exam, he's figured out what I was experiencing was spasticity of certain muscles in the region...and sure enough I popped an extra baclofen and the pain eased.

And it might just be my urogyn, but they are so responsive to issues. Call in the morning, tell them you're having a problem, and they fit you in that day. I don't think I've ever had to wait for an appt.

I can't imagine having to wait two months...what are you supposed to do in the meantime?

[coffa]

Thank you everyone!

Yes, I've actually been on Neurontin for over a decade and am now at the highest dose they'll give me (and that's been the same for years).

I also take Baclofen for spasms....and I'm on the highest dose of that one too.

I hope someone can DO something!!

I called my neuro...he's never heard of this...ugh, but is getting my records from this "situation" from my pcp & gyn.

At least yesterday the specialist that my gyn is sending me to called....my appt. is in 5 weeks. O.M.G.

So....I'll sit the best I can while I wait and keep researching & calling other dr's etc.

Wish me luck!!

[rdmc]

If you can't get relief from the pain, try ice. during exacerbations I sometimes have pretty severe pain in that area. I sit with one of those gel ice packs under each leg (where your leg joins your body) and get temporary relief from the pain.

[coffa]

Most of the sx's have gone. All discomfort/pain has slowly gotten better over the past 4 days.

But, the swelling is still there. I'm hoping this too will go away!

Now I'm able to get more comfortable. Though I can wear something close to clothes now...yoga-type and sweats. Underwear is still too uncomfortable.

I hope it just keeps getting better. Still going to see that specialist next month. Taking one day at a time with it. But I should be used to doing that just from MS!

[kmandie]

Also go to the NationalPainFoundation.org site and in the search area type in "vulvar dysesthesia." It lists multiple sclerosis as one of the neurologic diseases that can lead to vulvar pain.

Sadly, many doctors are not aware of this vulvar pain link to MS so you must insist that they take this into consideration. Two months can be a h*ll of a long wait when you are in pain. It can't hurt to call other clinics to see if they can get you in sooner.

Good Luck!!!

Thank you for this. I have talked to my neuro about this. I feel like he thought I was crazy and told me that my gyno had to deal with this. He said that this is not a complaint from people with MS. I have been to the gyno several times over the last 3 years and went again yesterday. She finally said that vulvodynia pain I'm having is neurological and I need to make the neuro deal with treating this. I'm looking for advice on how to make my neuro see and finally get the help I need. I did up my neurotin for now to see how I do.

[gellexi]

Vulvodynia

I have had vulvodynia for over twenty years. I've seen gynecologists, pain specialists, and even a pelvic pain specialist. I've tried all kinds of treatments over the years, (topical creams, oral meds, pelvic pain blocks, diet changes, and on) but nothing has helped. I would give anything for a day without pain. I'm sorry to be so blunt, but vulvodynia is pure hell.

However, until I read these recent posts, I didn't know for sure there is a connection between MS and vulvodynia. (My neurologist never heard of vulvodynia. All he could do was sympathize and write prescriptions for pain meds that were useless.)

[celeste]

Lyrica seems to be helping to keep my flare ups fewer and farther between. My PCP diagnosed vulvadynia the first time I mentioned my discomfort to her. I guess having a woman doctor has its benefits.

Certain chairs and clothing seem to make it worse even though there doesn't seem to be much rhyme or reason as to which ones.

It's a miserable problem to have. I hope you are finding some relief by now.

[sirach36]

I am still in Limbo. One of my early symptoms was numbness and tingling in the pelvic area. Then the incontinence started, then the pain during intercourse. When I told my neuro about the pain, he called it vulvodynia, and was very familiar with it and said it it is defintely neurological. Mine also comes and goes. Maybe I'll try an extra Baclofen as needed also.

Sue

[Sunshyne0226]

Resolution??

Hi, I realize this thread is a year old but has anyone been able to find relief? I was just dx w vulvadynia and this is something so debilitating and painful, I can't imagine anyone else going through this for any length of time. I was given prednisone for six days and I have increased my meds on the neurontin. Extremely painful to walk and the pain just shoots straight through me. My doctors have never heard of this...sheesh really???
Thank you