My journey so far...

My pain started fairly young. As I began to go through puberty and start my menstrual cycle, I struggled because unlike my peers, I found myself unable to wear tampons. Summers were difficult, embarassing, and frustrating. But it was nothing compared to the battle I face now as an adult.

When I became sexually active I had a difficult time because penetration was excrutiatingly painful–even manual penetraton causes that burning, painful, itching, scratching feeling that I felt when I tried to use tampons. And sex obviously was no picnic.

I lost my virginity at age 18 to a boy who was comprable in size to myself– 5’3 95lbs– the pain was noticeable but not crippling. Because he was not the most well-endowed, I was able to have sex even through the pain. Although I never found it particularly enjoyable, I was able to do it. But after a few months of a not-so-great relationship, we broke up and I met the love of my life, John. And four years later John and I are still together against all odds. We connect emotionally and intellectually and every day I feel like the luckiest woman alive. But our sex life is difficult.

In 2008 I first started looking for answers. A gynecologist tested me for Endemitriosis through an exploratory Laproscopy and found nothing. So I was quickly back to square one. After searching and a lot of confusion, I explored treatment options for Vaginismus–believing that to be my condition. I used dialators and other techniques and still was left no closer to finding relief.

In 2010 I began seeing a specialist at Boston Medical Center who told me that without a doubt I had Vestibulitis. He tested my blood to see what was going on with me and discovered that I have extremely low levels of testosterone. So for over a year I have been taking a topical testosterone gel and using a numbing solution to try to have a normal sex life. (yeah right!) I cannot take any form of oral contraceptive either to make sure that my body is not overpowered by estrogen.

A month ago I went in for another follow-up appointment and laid down the line. I am still in pain. It has been over a year and the testosterone is not helping me. His offer to me was to perform a Vestibulectomy where he would basically remove the inflammed tissue. But I don’t want surgery. Not if it’s not necessary. I feel like there are more answers out there waiting for me and that it is my responsibility to take charge of my own life and explore other options.

I need answers. There has to be some reason I have this. If I get the surgery, won't the tissue just grow back still inflammed if I don't deal with what is CAUSING the problem? I need to know more about this condition and I am interested in learning what worked for others in my situation

So, after my docotor (Ricardo Munnariz at Boston Medical Center) recommended the vestibulectomy I decided that instead of putting myself through that pain and time off of work I wanted to get a second opinion. So I made an appointment with the Women's Health Center at Harvard Vanguard in Burlington where Dr. Elizabeth Stewart works out of. My appointment was with Katherine Bell N.P. and I really liked her.

Thus far I've been taking Testim to build up my testosterone but my pain is still there and my drive hasn't increased either. But Dr. Bell did an exam and I held a mirror so I could see myself and she showed me that most of my skin was healthy except for a small area of inflammation. She prescribed Neurontin or Gabapentin at 100mgs increasing every 3 days till I hit 1000mgs where I will go in and reasses. She also wanted me to start physical therapy but unfortunately the wait list for that has me waiting until June so I am just going to work with dialators on my own. But she said the vestibulectomy surgery can often do more damage than good. And that it was unneccessary in my case.

Right now I feel like things are looking up and I'm really happy about it. I didn't want the surgery unless absolutely necessary and I'm so happy she didn't recommend that for me.

Anyone who lives in the New England area should seriously consider taking a trip to Burlington to see the Vulvovaginal Specialists there because they are amazing. I'll update with my progress!