Gynecology / Women's Health Expert Forum
Vulvodynea
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Vulvodynea

I was diagnosed with vulvodynea several months ago.  The pain is constant and makes even sitting down hurt.  Intercourse is very painful as well.  I've seen two doctors and two physicians assistants and, as a result, have come to the conclusion that no one in the medical community seems to know anything about this despite the fact that 15 percent of women supposedly suffer from this at some point in their lifetime.  I've been told the nerves in that area have, for some unknown reason, become overly sensitized and that using Lidocaine daily will calm them down and make it go away.  I've been told the Lidocaine will only suppress the pain, that there's no telling when the vulvodynea will go away.  And I've been told that it's a skin condition, there's no cure and to just keep using the Lidocaine.  I've used Lidocaine for several months now.  It dulls the pain most days, does little on others, and has offered no long-term relief.  Most of the women I've seen posting on forums on the internet have suffered from this for a decade or more.  One doctor suggests vulvodynea is a result of a weakening of the pelvic floor muscles, which puts pressure on the nerves, and that Kegel exercises can relieve 80 percent of the pain.  I thought this sounded logical and asked my doctor, but she scoffed at it.  WILL Kegel exercises help?  One of the physician's assistants told me she knew some women who rid themselves of it completely by applying raw honey to the area.  Would there be any harm in  my trying that?  At this point, I'm willing to try anything other than surgery or anti-depressants, which many women apparently take for it.  (I really don't understand what anti-depressants have to do with a woman's vagina anyway.)
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Hi!  This is a difficult condition, and you are absolutely correct that no one in the medical community knows or agrees on much about vulvodynia. In my experience it is a chronic condition that rarely resolves. I have read about lots of different approaches, and actually surgery seems to have one of the better success rates.  If I were to recommend surgery, though I would definitely send my patient to a specialty center where this type of surgery is done every day.

I have also read about interferon injections and absolute alchohol injections.  Some doctors suspect that the HPV virus may be the underlying cause, others think that it results from inflammation of the tiny glands surrounding the vaginal opening.  

Many women have a history of sexual trauma, but the woman with the worst case that I have seen did not have that history, so nothing is written in stone.

As far as Kegel exercizes and raw honey--I think that they won't do any harm, but that's about the best I would hope for with those.

As far as your question about antidepressants, many of these are used to treat chronic pain such as diabetic neuropathy, which is in some ways similar to vulvodynia.  The brain is a giant nerve if you want to think of it that way, and these medications really do alleviate pain--it is not just a way of telling you its all in your head.  Of all the options, I would lean toward recommending a trial of these--once again it won't do any harm--something like neurontin or lyrica or elavil might really help--so try no to just dismiss them!

One other possibility would be a trial of high dose topical steroids like elocon or diprolene or clobetasol.  It might also be related to lichen sclerosis--which brings me to my last recommendation which is to consider a skin biopsy of the affected area, just in case a pathologist might be able to make a diagnosis for you.

Hang in there--this is a tough one!

Dr B
7 Comments
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Avatar_f_tn
Your symptoms seem similar to mine....mine have been constant with some good days and some worse....would you describe your pain as tingling or pinching or just plain irritation? I've seen 2 doctors in the course of about 4 months of pain, I've been tested for everthing and was even told it could just all be in my head...yeah that's a good diagnosis! Anyways I've going to see a specialist soon, do you think my symptoms are similar to yours? Sometimes there looks like chaffing there other times there is pain with no visible symptoms. Your input would be helpful! thanks.
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Avatar_f_tn
The best description I would use is rawness and irritation.  I thought at first it was a yeast infection, which was the first diagnosis I received, though the doctor seemed uncertain.  The condition was actually quite mild in the beginning and got worse very quickly after I took Diflucan, then used the cream after the second doctor's office visit (mico-something?).  I had had occasional irritation, mainly after my period, for about three months, but it had been so mild I didn't think that much of it.  I asked the doctor about it during my annual exam.  Then, as I said, it got a lot worse over the next three weeks, so quickly that it really seemed like the medication I was given inflamed it.  It's been bad ever since.  By the time I went for my third office visit, the physicians assistants who examined me were afraid to even touch me because the area had become so red and irritated.  I've been tested for HPV and a host of others things -- all negative -- and have no history of sexual trauma.  The first doctor didn't know what it was.  The two physicians assistants had both just attended a seminar on it and diagnosed it.  A second doctor confirmed the diagnosis.  

Sitting usually makes the symptoms worse.  I noticed that days I am on my feet a lot tend to be better than days I sit in front of the computer for long hours.  Tight clothes can irritate it.  The skin can be so raw sometimes that it burns during urination.  (All of these symptoms are severe if I don't apply Lidocaine twice a day and some days even that doesn't seem to help).  The redness isn't as bad since I started using the Lidocaine, but is still there.   Also, sometimes it doesn't hurt at all when I wake up in the morning, then gradually gets worse during the day, which is why I thought the "weak pelvic floor muslces" theory was the most logical.  Seems to me that when you're lying down, your organs don't put pressure on that area the way they do when you are standing if that is the problem.  That's why I'm going to try the Kegel exercises.

I hope this helps you.  If you are diagnosed with vulvodynea and find relief, please let me know.    
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Avatar_f_tn
Wow, the rawness and irratation sound VERY familiar and the burning when it gets really bad. It all started with redness and burning and I was given cream for a yeast infection as well and that made it sooo much worse!!! Then didn't test me for yeast either... I was in so much pain after that. Then I have sharp pains as well in my genital area and an extreme irritation near the opening of my vagina, so much so that I wanted to just pull the inside of it out. I have also been tested for STDs 3-4 months after the last time I had sex and they were all negative. For a while I was worried I might have herpes or sometimes since I had some sort of mono related symptoms at the same time, but no fever. The pain has been pretty constant though with a few good days, but then weeks of worse days, and this has lasted for about 4 months now. I actually feel better today, but recently the part of my underwear that touches the creases of my groin have been irritating my skin badly, and I don't use fragence or odd detergents either. I have no idea what is going on but I'm going to see a gyno near the end of this month since that is the only time I can get in, and I'll let you know. Good Luck with the Kegel exercises! :)
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Avatar_n_tn
Oh wow.  This sounds exactly what I'm going through.  The doctors have no idea what it is.  The burning is mostly the day after sex and all of it started after having sex in the shower with no lubrication 2 months ago.  I've had this ever since and thought it was an allergy to Tide, so I switched all of my detergents and soaps to hypo-allergenic (All free of dyes & perfumes and Aveeno soap.)  Sitting in the same position makes it worse around 2:30 in the afternoon and standing makes it less severe.  It is really bad when on my period as the bloody discharge hits the opening of my vagina and burns.  

The only conclusion I could come to (after seeing 2 doctors and being on 4 doses of antibiotics for a bacterial infection) is that they are friction tears at the opening of my vagina and having sex just reopens the not fully healed tears.  The only constant is the day after having sex, the burning starts.  I've tried using lubrication before sex and it still happens.  

Been tested for every STD under the sun, including herpes 2.  All negative.

At a loss here.
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Avatar_f_tn

Try the antidepressant, I was on Asendin about 20 years ago, I got rid of the problem, and after a while I stopped the pill. I  just got back on the Asenden, hope it works again this time.
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Avatar_n_tn
I have gone to the doctor again and explained what was going on.  We have come to the conclusion that friction tears have never fully healed and by having sex at least once a week since the original incident reopens the wounds before they fully heal.  She told me that normal healing time down there is 4 weeks because the skin is so delicate.  So she told me to abstain from vaginal sex for a month to see if that is what is causing it because there is nothing physical she can find near the opening of my vagina where the burning is, and to use A&D ointment to keep the area moist and protect it from the acidic urine trail.  Hope this helps!
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