Dear Trudy,
Thank you for writing this blog. As a fellow blogger writing about a taboo subject, I really appreciate the bravery it takes to post on such a sensitive topic.
I write here as an ally; I’ve never had bladder or bowel problems. That said, I accepted Trudy’s invitation to join this Circle of Friends because I suffer from pelvic pain, as do many of you. I think it is important for patients with taboo problems to speak up and spread awareness about their issues, in the hopes of creating better treatment options for themselves and others. I also wanted to write because many people have overlapping conditions, so some of you may benefit from what I have to say, and some of my readers may benefit from your experience.
I started to have vulvar pain in April of 2004, over ten years ago. I went to a string of gynecologists. They told me nothing was wrong, that maybe it was a yeast infection, that it could be because “your generation wears thong underwear,” and one woman told me I was wasting her time and that she had to go see patients with real problems (!)
When the hospital that particular gynecologist worked for sent me a form asking me about my experience, I wrote a lengthy letter complaining about her poor treatment of me. By then, I had received a diagnosis, of sorts – vulvodynia. Vulvodynia is simply “vulvar pain with no known cause;” receiving this diagnosis did not tell me anything new. It only echoed my knowledge that something was wrong.
Over the past ten years I have gone through a lot of ups and downs, tried treatments that didn’t work, and finally found some that did. I have learned that my health starts with me. I am the captain of my team, and the only care providers worth having are those that work in partnership with me and each other.
Lastly, I have learned how important it is to have peers, people who are going through similar experiences. By making connections with each other, we form a louder voice, one that can make bigger changes.
Won’t you join me? Check out my blog at YatraYoni.com.