His and Her Health

Background (actually the short version, belive it or not): I am 25 years old. I've always had a very normal, very comfortable, very active sex life. I've been on various forms of OC (orthotricyclen, mircet and now yaz) almost continuously from age 17 and never had any noticeable problems. In the end of June of last year, I started dating my current boyfriend. We had been something of an item 2 years prior and had amazing sexual chemistry together then. But by the beginning of July, I started experiencing this intense stabbing pain during intercourse. It seemed hard to pinpoint where exactly the pain was occurring at first, because it tended to throb and shoot right through me, resonating for some time aftewards. I started having issues with lubrication, which has occurred on and off through the years, so I supplemented with astroglide and the like. Initially, I tried to ignore the pain. We were a new couple, and I wasn't prepared to discuss it. I have no qualms about talking openly about sex, but somehow was very uncomfortable about there being something inexplicably wrong with me. I made an appointment to see my gyn and to get some std tests run, just in case (even though I doubted it could be that since it only hurt upon contact). Everything was negative. The pain persisted and as we were having sex quite frequently, it often became intolerable. When I absolutely needed a break, I claimed a little soreness like it was nothing and we took a few days off, but it didn't help. I cried a lot, hated myself a lot and got severely depressed. Finally, in september (after maybe 2 appointments and multiple tests), I told my boyfriend what was going on with me, the pain I was experiencing and the lack of explanation or feasible solutions. He was very sympathetic and told me to do whatever I needed to. I began looking for explanations online. Because the source of the pain was kind of hard to pinpoint at first, when I read about Vulvar Vestibulitis, though I definitely had similar experiences, I wasn't really sure I fit the description and after 5 or 6 doctors visits, prescriptions for antibiotics for Bacterial Vaginosis, Lyrica to treat nerve pain, toradol for general pain, abstinence, lots of tears, surgery suggestion, and I don't even recall what else, I just gave up. I found excessive lubrication helped to make sex tolerable sometimes. I can even still achieve orgasm at times in spite of how much it hurts (though it definitely takes a lot of concentration). My boyfriend and I got into a routine of having sex once a week, down from an initial 6-7 times. He was super understanding and never pressured me, but over time, I felt isolated and became more and more depressed about it. I felt inadequate and neglected and even though I knew he was withholding his attentions so as not to make me feel worse, I couldn't help but take it personally. It went on this way for 4 months or so, but in the last week, I've taken a renewed interest in trying to fix this again. Luckily, I came across a lot of helpful info on this site and others which had previously evaded me somehow (odd, because I swear I thought I'd read everything).

So, now I'm looking for options. I contacted the NVA and got a list of doctors in my area. There are 2. One OBGYN, one in neurology. Both are male which I must admit is somewhat disheartening as I tend to get pretty emotional when discussing this, especially the more frustrated I get, but I'd like an actual diagnosis and not just a shot in the dark with negative complications (Lyrica was such an awful idea). I called my current gyn and asked if she could prescribe me lidocaine before I come in for yet another appointment (she agreed- I'll pick that up today). I guess what I'm looking for is a more spelled out list of treatment options somewhat in the order they should be tried. Obviously I'm thinking I should discontinue OC, but what alternate methods should I consider? Condoms tend to irritate me, I'd prefer pills, IUDS, etc. It seems all "home remedies" (such as calcium citrate) are thought to have little effect. I've read so much and gathered a ton of info, but at times it's hard to pull it all together and see what step to take next. So, if you can give me any advice in a more uniform manner, I'd really appreciate it. This is all so confusing. Thanks in advance.

also, for the record, I want to add that the pain is very recognizably coming from the left bottom area at the entrance to the vagina. Having established that, I feel pretty confident, that I am indeed experiencing Vulvar Vestibulitis.

Here is a link to one of our websites with an article that may have information you can use.

http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=19&Itemid=84
Also visit
www.cvvd.org

Thank you. I ahd read through that article and it's one of the places I got a lot of ideas about the treatments that exist, but I guess I was wanting a little more detail about these treatments (other than the surgery option). Like is there any rhyme or reason to what is tried first, second, third, simultaneously, etc? are steroid treatments safe (I've read conflicting ideas)? and what options exist as alternative contraception methods? obviously, it's ultimately up to my doctor what plan is pursued, but as she seems somewhat ignorant on the subject, I'm trying to get a sense of where to direct my research so that maybe I can bring up the best, most viable options to her.

I have had good results with elavil, but was told my pain in the vestibule is due to PFD- so why does the elavil work so well??? do I still need pt? could the doctor be wrong?

Here is a link that might have the information you want.Also there are other articles on that website so browse around after you get there.

http://www.cvvd.org/vulvodynia

If your questions are not answered by the article perhaps you should have a counsultation with a vulvar pain specialist who can answer all your questions and after an examination treat you.

Hi sschwa5,
I have been diagnosed with vulvar vestibulitis and am actually going in May to have surgery by Dr. Goldstein. From all that I have learned, there are several treatments to try, some work for some women, others don't work at all. As you probably already know, it's important to find a doctor that actually knows what's going on with vulvar pain. I was seeing a gynecologist that was not listed on the NVA list. Hopefully the people they recommended to you are well versed in their knowledge, but if not, you can probably find someone else.

Anyways, for my treatment. Originally I tried an estrogen cream (which Dr. goldstein said won't work if you are taking hormonal birth control). Then I tried topical lidocaine (which actually helps me more than anything). I have done the lidocaine both daily and before sex and it seemed to cut the edge of pain. I also tried Desipramine which is often used with general pain (vulvodynia) to block the nerve paths and thus reduce the pain). It didn't do anything for me but apparently helps a lot of women. Then I tried Gabapentin which is a topical cream that helps break up nerve patterns. I also tried physical therapy to no avail. So now I am going for surgery....but with all those options available to you and with the names of 2 doctors, hopefully you can start trying to figure something out.

Try not to get discouraged if nothing seems to work. Hopefully something will...but if it's any consolation, surgery is supposed to be very effective, so if all else fails you still have a back up plan.

My email is *******if you want to shoot me an email with any questions and what not. Or if you just need someone to vent to about it.....my boyfriend has heard it ALL from me so it's only fair that you have someone to vent to as well!

Hang in there

<small>[ 04-04-2009, 09:51 PM: Message edited by: Moderator ]</small>

Cheeky, email addresses are not allowed in the posts. You may put it in your profile for others to contact you.

Dear SSchwa55,

I think that you are asking the correct questions but you have to think of VVS (or vestibulodynia as it is now called) as a symptom, not a diagnosis. Basically, vestibulodynia, is "pain at the vestibule." Its like "it hurts to walk, and I went to the doctor and he figured out that it was my knee that hurts." BUT, if you walked out of the doctors office with the diagnosis of KNEE-Odynia, you would think that the doctor stinks- do you have torn cartilage, a torn ligament, arthritis, etc.

Well vestibuolodynia is the same thing. Your vestibuel hurts, but Why- Is it hormonal, tight muscles, too many nerve endings, a dermatologic disorder such as lichen sclerosus or lichen planus, inflammation originating from inside the vagina....

All of these things cause vestibulodynia, AND, obviously, each cause is treated very, very differently.

So you need an exam by someone who really knows what they are doing to answer these questions before deciding on the best treatment.

<small>[ 04-06-2009, 12:52 PM: Message edited by: Moderator ]</small>

tight muscles seems like it is a symptom of something else as well? What causes the tight muscles?

Dr. Goldstein,
You mention that many different factors can cause vestibulodynia. Is it typically the case that if there is no physical factor that can be seen, ie. dermatologic disorders or lichen sclerosus or muscle problems, that the pain is typically from an over abundance of nerve endings?

Also, can a loss of libido be associated with hormone issues that cause vulvar pain? I have read quite a few posts of women, including myself, that don't have any desire for sex, but I'm not sure if this is typically associated with vulvar pain and the emotional stress or if it's more often caused by hormonal imbalances.