Vulvodynia Support

Hello anyone out there who can offer some help with my nightmare,

I'm 29 years old, married for seven years. I was just recently diagnosed with with Vulvodynia. My doctor basically wrote my diagnosis on her business card, told me to do some research, and to come back for the follow up appointmen with her! What the #$%@ excuse me really but my crotch has been on fire for the past 3 months and I have taking every antibiotic there is. Am I supposed to live like this forever? I'm so confused and depressed about the way I feel that I can't think straight or concentrate on my work and home life anymore.

It all started in May 06, I started feeling an uncomfortable burning feeling right around the last day of my period. I thought it was something that would just go away but it got worse. By around the second day the pain became unbearable. It would start with burning, and the itching would come and go. The burning was so horrible I felt like my legs were weak from the pain. I decided to use an over the counter monistat and the burning became worse. So I went to my family doctor and he ran every std test and they came back negative. He then told me that the yeast infection was gone and the irritation would eventually just subside on their own. He says it's all related to stress since my husband and I were sepearted at the time. About a week later the symptoms disappeared completely.

On September 27, .06, about a day before my period was going to end the horrible systems came back. I visited my family doctor and he told me that there was nothing was wrong with me but he would just prescribe and antibiotic anyway. Well, it seemed like it sort of worked but as soon as I was done the symptoms came back. Long story short, I went to him three more times before deciding to see another doctor. The second doctor I saw twice gave me some vaginal inserts called ZAZOLE which only gave me temporary relief as well. This third doctor finally diagnosed me without any help. I asked her to refer me to another doctor and she referred me to a doctor who has been going to seminars to learn more about Vulvodynia. I have an appointment with her on December 9th. My symptoms come and go all day just about every day and I don't know how much longer I can take it. I'm so sorry for this very lengthy letter but I am so desperate for answers and maybe suggestion on where I can go for research or even what questions I should be asking this new doctor.

Thank you and I wish you all the best who are suffering like me.

Welcome to the board--I know it's quiet, but I think my hiatus (work and surgery) is over so I should be around more often.

I can't imagine what your doctor was thinking prescribing an antibiotic for vulvodynia, it's not an infection for goodness sake!

Question #1, are you on birth control pills?  If not, are your periods normal?  Sometimes burning can be caused by insufficient estrogen, which is not all that uncommon for some women on certain pills.  If you weren't cycling properly, you could run into a similar issue.

Question #2, when the doctors are prescribing antibiotics and antifungals (that's what Zazole is), are they testing you for any particular infection or just throwing medication at it hoping that something will work? (that tactic drives me nuts)  If your family doctor's theory was that it was stress, I'm curious as to what bacteria causes that so I can get rid of that myself. ;)

Before you go to see the new doctor next weekend, you should write down everything you can think of regarding how you feel.  When it started, how long it lasted, when it came back, what it feels like, what makes it feel better or worse, where it fits in your cycle, how it coincides with sexual relations, if you're on any medications....  Sometimes it's not altogether apparent where the pain is coming from, but sometimes if you write everything down you can find triggers in your lifestyle. Sometimes keeping track of what you're eating and how you're exercising and what you're washing yourself and your clothes with can provide clues too.

In my own situation (dysesthetic vulvodynia, only flares up when my estrogen is low now), I started with atrophic vaginitis caused by the birth control pill Loestrin when I was 27.  From there I got a hideous bladder infection that didn't feel like it went away even when my urine tested clean.  Suspecting a yeast infection, my family doctor gave me samples of Terazol, which made things even worse with an allergic reaction.  I saw a gyn who changed my pill to Triphasil, and I lived with daily genital pain for the next year and a half while I kept changing pills to try to make it stop (Ortho Cyclen next, then Nuvaring).  I took Elavil for that year and a half, and it did help.  Elavil is a tricyclic antidepressant that, in very small doses, blocks the pain signals before they get to your brain.  My doctor figured it might work since my symptoms improved in the evenings when I would drink a beer and lay down on the couch after work. I am symptom free now, as I said, except for when I tried to quit using hormonal birth control and my estrogen dropped.

Let us know if we can help, okay?  It's a very difficult thing to deal with.  We've agreed here that stress definitely makes our symptoms worse and having a supportive partner can help.  I hope the next doctor you see will have more ideas to help you, but for right now if you can find something that makes you feel better, do it.  Good luck, please keep us posted!

Judie,

I really appreciate you listening to me and sending me a reply. It helps to know that someone is listening. Since I last wrote I had started to watch what I was eating and started taking about 800mg of calcium everyday, making sure I was wearing the cotton clothing, and loose fitting pants. My symptoms were starting to subside and there were a couple of days where I felt they were actually gone but you know how it goes....it all came right back. I woke up on Tuesday morning feeling like I had a painful lump down there. During my investigation I found that it was a small pea sized lump at the bottom of my vulva and these little taste bud looking things with alot of inflammation. I called my doctor immediately and made an appointment.

I saw my doctor today and she diagnosed it now as vulvar papillomatosis and the pea sized bump as my bartholomul's gland (I don't know if I spelled that right). Very scary words, and she said that she can't treat it yet because it's such a rare condition and that she has to do some research. She also took a few cultures and told me to make an appointment to see her in two weeks. She also said that I have another yeast infection and gave me prescription for that. She said she would do some research and probably refer me to a vulvar specialist during my next appointment. I'm even more confused now. I did some research on my own and I don't find too much about this condition. I've tried to find a doctor in my areas that specializes in vulvar problems and can't find any so I'm hoping she will find a good doctor for me that will help me.

To answer some of your questions, I'm not on birth control. I stopped taking them about 5 years ago. My period is never late but I always start with a very dark discharge and I get the dark discharge after my period. I explained to my doctor today that I may be having a hormonal problem and she said that it's definitely not hormonal. I sort of didn't feel comfortable with that answer since she hasn't run any tests. I've been to so many doctors, I'm wondering if it's time to switch again or to see how my next appointment goes. Thanks again for listening, I really do appreciate it and I'm happy that you find a solution to your problem and that you are feeling better. I hope I can write to tell you that I found a treatment for myself one day.

Mimi

Hi Mimi, I'm glad I could help.  I haven't heard of vulvar papillomatosis (until I just did a Google search for it), but if you have a lump where your Bartholin's gland is, I wonder if that could be a cyst.  It is also possible for vulvar vestibulitis and papillomatosis to occur at the same time, so it's good that your doctor has realized that she's beyond her experience and will refer you to a specialist.

If you have regular periods and aren't on the pill, it's less likely that it's a hormonal issue, but I wouldn't be able to rule it out altogether for myself either.  Hopefully the specialist can help you as much as you need!

Good luck to you, I wish you all the best....