“I was diagnosed with vulvar vestibulitis in 1996, while living in Washington, DC. Out of nowhere, having sex was incredibly painful. After sex, it took hours for the stinging in my vagina to go away and to walk without pain, as my lower back would start to go out each time. I saw two doctors in DC. The first prescribed an antihistamine. At the time it was thought that VV was an allergic response. That medication didn’t help. The next doctor prescribed a low dose of controlled substance, to decrease neuronal hypersensitivity. That didn’t help either. That same doctor believed that ultimately, multiple injections of controlled substance into the vestibular gland were the most effective treatment.
Not too thrilled about having needles stuck in my vagina, I hesitated. His response: “You’ll spend years searching for the right cure. Trust me, you’ll be back. This is the only thing that works.” Right…
Fast forward to summer 1997. I am now living in San Francisco, where I couldn’t find a doctor to administer the injections. No one seemed to believe that such an invasive approach with so little research to support it was the way to go. It was there that I found a urologist who was prescribing a consistent and frequent course of intravaginal myofascial release, biofeedback and external physical therapy. It was a full-service operation that included acupuncture; he also had a psychological counselor and yoga instructor on hand. He believed that vulvodynia was best treated holistically.
During my initial consultation, I started to faint while being evaluated and became hysterical. Apparently, I had vaginismus as well. I was very much closed for business. It took me a while to get on board with the doctor’s approach. Why? Would you want a grandpa putting his finger in your vagina 2-3 times a week and sticking a probe in there to see your pelvic floor muscle response on a TV screen? This just couldn’t be happening. I believe they call it denial. Fortunately, the physical therapist administering the bio-feedback gave it to me straight after a few months of my begrudgingly showing up, cancelling, not facing what was really going on. She said: “This isn’t about the opening of your vagina. This is about you and the way you live your life. If you want to get better, you need to fully commit to this treatment. And it can’t end there. You are going to need to make major changes, because your whole being and perspective prolong the pain cycle. Essentially, you must chill in every respect if you are going to beat this.” Fast forward a year, during which I took her advice – started coming to the center three times a week, began yoga, acupuncture, and taking life less seriously – and got totally better. Before moving again, this time to New York, I had a sexual relationship without pain. It felt like a miracle that took a lot of work to achieve.
In New York, I clenched up again and the VV returned. It was almost a year of serious searching before I found someone who did intravaginal myofascial release and was willing to really listen to what I had experienced in San Francisco.
The listener I am referring to is, of course, the author of Heal Pelvic Pain. Within a few hours of knowing Amy Stein, it was obvious to me that she had the instinct, talent, empathy, and guts to bring to women like me what they were so desperately lacking – a holistic center to treat vulvodynia. Within the year, Amy accompanied me to San Francisco, where she met my doctor and his staff, and so generously held my hand while he stuck a really big needle into my pudendal nerve. Within a few months I was feeling much better and the pain during sex was gone.
Ultimately, what I’ve learned is there are no easy answers or quick fixes when it comes to chronic pain. But there is most definitely hope, if you are willing to allow for it and commit yourself to change.”