Vulvodynia -- Reader Experience

Here's an email I received from a reader:

While my husband and I do have an AWESOME love story I think the story of when our marriage was not so rocking hot is a much better/ more needed story to tell. I've actually been trying to think of how to get my story out there somewhat annonymously. I think its important for young newlywed good girls to hear.

The hubs and I got married last December and both of us had saved ourself for eachother and we were so glad we did! We had an amazing and romantic honeymoon just like I think both of us imagined ;) However, when we got home, the first time we tried it out in our new apartment I knew something wasn't right. It burned and stung and itched and was miserable.

I wrote it off as a yeast infection and after monostat made me feel like little crawly things were inside me, I finally went to the DR. They have me the standard diflucam (not sure on the spelling!) and sent me home, even though I wasn't testing positive for yeast- they figured the monostat had killed it but I was still being bothered. That worked for a little bit but every once in a while it would still hurt either during or after.

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I went to my school's health center and got passed between general doctors and the gyno who each gave me conflicting advice. "Do it so you can get used to it (basically stop being a whimp and RELAX)" and "Don't do it- give yourself a break!" The gynocologist was the one who told us to still do it and try wierd things like putting yogurt INSIDE me (EWE!!! There are conflicting opinions on if this is actually good for you and/ or works, so if you are told to do this, make your own deicision. I just couldn't handle it so I didn't do it for very long) and baking soda soaks and stuff.

After a while I still knew something was wrong so I kept whining. The gyno finally sent me to a dermo telling me he no longer had any clue what do it. I honestly just felt like he was passing me off because he was sick of me and didn't truly believe anything was wrong.

Like I said, we were married in December, this was now March. Even when we were told to do it, I was only doing it for my husband. I hated it and it usually ended in tears. My husband was as supportive as he knew how to be but I think the mean gyno put ideas in his head that maybe I was just faking it and didn't like sex and/ or wasn't attracted to him. Poor boy- that still breaks my heart!

The dermo was much more symmpathetic but still after ruling out a few skin conditions was stumped. She took pictures and sent them to a few of her "mentors" accross the country.

However, I hadn't heard back from her in a while and the pain had become unbareable, even though we hadn't had sex in months (it was now May). In an act of desperation (and maybe inspiration) I called my health center again demanding to see another doctor NOW. I lucked in to getting an appointment with a doctor who had seen girls with my problem before. About an hour before my appointment the dermo finally called and told me what her colleagues suggested which was a disease called Vulvodynia- basically pain of the labia. I'm not quite sure exactly what it is but I know what it is not- its not an infection and not an STD.

At my appointment at the health center I told the new doctor what the dermo said and he said it sounded right and suggested I see a pelvic pain specialist in Salt Lake City. I was so grateful my husband went to all of my appointments with me and was so supportive. He still treated me like a princess and we did our best to keep the romance alive.

The dermo gave me anti-depressants that were supposed to dull the pain (and completely screwed with my mood and made me more depressed than I already was given the whole situation) and sent me to a physical therapist (most awkward experience of my life but I have heard it works for a lot of women). I tried these two solutions out since the specialist couldn't get me in for weeks. They didn't work (the therapist told me my circumstances were too severe for what she could do).

When I finally met with the specialist it was first time I felt like all of this was finally over. He saw me a few times just to confirm that this was indeed vestibulitis, a form of vulvodynia, and I ended up having surgery in July where they snipped off the hyper-sensitive skin. We just got the green light to try things out a week ago (now that we have been married 10 months and have no clue what a normal sex life is haha). Everything is fine so far and there is no more pain!! Thank goodness my story has a happy ending and I have a wonderful husband who held my hand through it all and made sure I knew that he loved me even though I felt like I couldn't show him how much I loved him.

Some stories of this disease dont' have a happy ending. My doctor told me of one girl he helped who's husband couldn't handle a temporarily sexless marriage and anulled it. But the point I want to get accross is that if something doesn't feel right- and especially if it hurts- don't be afraid to speak up. At first people might not believe you like they didn't believe me. They might tell you just to relax or lead you on a wild goose chase. Don't give up though! Don't settle for living in pain! You know your body better than anyone else- listen to it!! And fight for the help and support you need/ deserve.

Here is a video clip from the Dr. Oz show explaining What Causes Vulvodynia.