His and Her Health

Dear Doctor,
I am thrilled to come across this website for support. I have suffered from vulvar vestibulitis for years now. I have seen many physicians locally and a well known nurse practitioner with no success "yet".

I have been suggested by one that I need estrogen, staying on the pill is fine, yet another suggested I go off of it. I tried going off and it did not improve but I also did not get a period for 2 months. I am 40 and I didn't know if I "need" the estrogen in the pill so I went back on it.
I also have VERY thin scalp hair in recent years and see a specialist who feels maybe the pill is preventing it from being thinner, so out of fear of additional hair loss I went back on it.

I am overwhelmed by the information supplied to me. I want to resume a normal sex life with my husband and preferably regrow my hair. If anyone thinks that going "off" the pill is the best advice I will do so. For all I know it caused my thin hair to begin with? I took Yasmin for nearly 5 years, prior to that Mircette and past 6 months on Yaz.

I have tried the following with no success:
Estrace cream
Lidocaine cream
Calcium citrate
Compounded estrogen/lidocaine
Long term diflucan (one a week for a few months)
And tried going off the pill but it was just 3 months and no better (had not used hormones though).

If you have any advice or recommendations for my hair and this pain or feel they may be related please let me know. My pain is primarily at the opening and can be associated with extreme redness, even tearing. The burning/stinging definitely feels like the nerves are inflamed.

Hope to find a cure soon! Thank you

<small>[ 06-01-2009, 08:21 PM: Message edited by: Moderator ]</small>

Here is a link to our website with information that may help you. Please feel free to browse the website for more articles.
http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=149&Itemid=84

Thank you for the post. I have not come across much information regarding the likelihood of Birth Control pills being the culprit. My doctor says it is candida yet I don't test positive for it. If you can provide me with any links regarding this that would be great.

I would also love to know the success rate for botox or interferon injections for this pain and how often they are necessary? Thank you

If BC pills are more commonly the cause (as it seems the doctor has felt or studies have indicated) is it more likely the lower dose estrogen vs. higher? I found a post saying the lower the dose the more likely. I take YAZ and the pain started prior on YAZMIN, yet I never had challenges on prior pills.
I am curious how long I must be off of it to resume normalcy. OR if ever you do?
Thank you

kitty68, here is another link to our website.You might want to compare some of these symptoms to what you feel and ask your Gyn if this is what you have.
http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=18&Itemid=66

Thank you again for the reply.
I have tried almost all of the treatment options aside from surgery and the injections this is why I ask again are birth control pills "commonly" the culprit and do you have any articles in relation to this or what types of pills or if "all" have shown a relationship to this condition.
My various doctors have differing opinions one says at 40 they may "help" another says probably the culprit after many years. Any articles or responses from members regarding this is helpful. Thank you

I took Yasmin also and my doctor thinks it may be responsible for part of my problems. She says that the lower hormone bcps are the ones that can lower estrogen and testosterone levels. To address thinning vestibular tissue due to bcps you have to go off the pill AND use a compounded estrogen testosterone cream. I know Andrew Goldstein has an article where he talks about the link between bsps and vestibulitis briefly. My doctor also said there was some research indicating this but I don't have a link to an article... Not sure whether the higher estrogen pills can be damaging too or not. I'm curious about that too since I was on ortho evra originally.

Here is a link to Dr. Andrew Goldstein's article.
http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=149&Itemid=84

BCP is one of the contributors to vestibulitis. So, you may want to try going off it again for a longer period of time-6 months, to see if there is a difference. You should get your horomone levels tested as well, b/c it could possibly be contributing to the hair loss. You may need a vaginal cream as well, but you should check with your ob-gyn or a gyn that specializes in vulvar disorders. the pelvic floor muscles commonly, but not always, contribute to vestibular pain, so that is important to have assessed as well.

Thanks for the reply.
I am presently on YAZ and previously Yasmin.
I have no problem going off but the local specialist says the Pill has nothing to do with it and it is more a "nerve" issue. The area of tenderness is strictly lower, right at the opening and nowhere else and "feels" like nerves, burning/tingling.
Has nobody found an association with damage to the bartholins glands and this pain when limited to this area? I don't have cysts but it seems so odd that the pain is SO concentrated above these glands.

I have been told it is not the pelvic floor in my base, but who knows.

ON the bloodwork, my free testosterone came up slightly low, estrogen 299, but nobody checked the SHBG does that matter? My estrogen was slightly varied but not much off the pill.
Any thoughts? The hair loss a total mystery.
Thank you so much!

Has anyone heard of Gabapentin cream or elavil cream helping? I have read a few posts on various forums about both of these.

Thanks! Still wondering what the gland/pain connection is, seems so limited to just over the glands you would think to treat/calm them the nerves over them would calm down.

I have had some patients being prescribed these compounded creams instead of taking them orally. They did so bc of the side effects they were getting from the oral meds. I can't really remember anyone coming back decreased symptoms.

Thanks for the reply? Anyone out there have any success? I am still so surprised that the pain strictly occurs above these glands (in my case) yet can have nothing to do with them? Isn't it possible they are damaged from either trauma or past meds etc.? I would think a hormone imbalance would effect the entire area and inside as well. It feels like nerves acting up so how to calm nerve problems? I do think that is what it is in my case.

Hormone imbalances can effect a larger area, but you may only be symptomatic in one area or in the entire area. It is very individual. local gabapentin or elavil has been helpful with some of my patients, as well as the same medication taken orally. Trauma or certain med's can be the cause. You need a proper diagnosis from a trained and SKILLED healthcare provider. Check out: nva.org, pelvicpain.org, apta/womenshealthorg, for a healthcare provider in your area.