What causes Vulvodynia?

This is an amazing video that really explain Vulvodynia by Dr. Oz. It's also great to share with loved ones and friends that can explain what is happening to you!  It really even helped me understand what was happening with my own body! http://www.doctoroz.com/videos/vulvodynia

What in the world is wrong with ME?

   This is the first time I have ever blogged before, so I appreciate you bearing with me. My goal for this blog is that it will be a safe haven for others suffering from Vulvodynia. I will be blogging my journey through diagnosis to revealing the truth, heartache, hope and joy that each day brings as I am working towards a life filled with less vulva pain. Although a #1 time’s seller book title might be “The girl with the dragon tattoo” I am feel like the title for a book about me would be simply titled “The woman with the irregular vulva” hence my blogging title.

     Here is my story:

       I waited to have sex until I was married and on my honeymoon I found that I might be waiting even longer than I had ever anticipated. That was almost three years ago!  I was told by most that sex would hurt the first few times and then it would be fine. However for me the one time we were able to get it in, I burned and was in excruciating pain for hours.  After the honeymoon, I went back to my gynecologist to figure out what was wrong. She simply thought I was just small and maybe my hymen was still intact. She sent me away with a shrug and an enormous dilator to “practice with”. The emotional roller coaster really began for me after that appointment; I knew what I was going through couldn’t be normal. I began sharing with a few coworkers what was going on, but no one seemed to have ever experienced what I was going though. I felt like a freak of nature, all I wanted was to be normal. I went to another gynecologist about and 1 1/2 hours away because their office specialized in “women issues”. He was not able to perform an actual examine, so he decided to prescribe pelvic floor therapy. Who knew they had physical therapy for the “pelvic floor”? Definitely not me! Because of the distance I went every few weeks, but for me the pelvic floor therapy was not an end all. I was still struggling with the pain and it wasn't getting any better. The gentle therapist did tell me that I feel things that most people don’t. She is the one who first told me I might have Vulvodynia. She went on maternity leave and since the therapy wasn’t making anything better I decided not to go back.

     Almost to the two year mark I went back to the original gynecologist office in my town but this time with a new OB GYN. She was baffled at first but thought maybe I might need plastic surgery. PLASTIC SURGERY, I thought well maybe I can get a custom made hoo haa and be just fine. I didn’t really want surgery but was willing to try just about anything. When I went back to visit her a 2nd time she stepped out for a few minutes, when she returned she said she had spoken with a colleague and he thought he could perform alternative therapy or surgery if needed. We made an appointment to see the new doctor, both my husband and I lacking in faith that anything would really come of it.  A few weeks went by and we met with him, and he gave us something we had been lacking for a long time…..HOPE. He said he had worked with another couple that had a similar situation and he thought I could take a test to see if my resting tones were high. He also performed a Q tip test, which made him away of underlining issues at hand. He said I had Vulvodynia! Finally I had something to hold on to, something to call this unusual issue. His nurses gave me articles to read about my condition and a list for an ICCEE diet.

    I was so excited when my husband I went back to the clinic 3 weeks later for the resting tone test. Unfortunately the test did not go well; I nearly came OUT of the stirrups when she tried to push the testing dilator in. We then used a smaller testing dilator but the resting tone test came back normal. The PA left the room while I threw my clothes back on a hugged my husband. I held my tears until I left the office. I lost it in the car on the way home, I thought that therapy would work but it wasn’t going to. I didn’t understand, I looked up more information about my diagnosis and came upon a clip from the Dr. Oz show that put me at ease. There are 6 million women suffering as I am, I realized I was not alone. I truly hope that my blog will reach at least one person that needs to know, they are not along.

     After crying on and off for a few days which I attribute due to the fear that was gripping my heart. I feared I might never be able to conceive or even enjoy sex with my husband. During that time I was able to lean upon friends, family, but mostly God. I realized he will see me through, he led me to this new doctor and I know God will give him the answers I need. I spoke with my doctor’s nurse (because I had a bladder infection just 2 days following the test) and she really put me at ease. I go back to the doctor at the end of the month. I am beginning a low oxalate diet this month as well. The OB GYN also prescribed me a methyl prednisone and amitriptylin. I believe that there is life out there for you and me that are filled with joyous days ahead and pain free sex! -That's my long story