One of the hardest parts of Vulvodynia that I have struggled to come to terms with is the overarching feeling of a loss of power and control over my life, my health and my future. The first year before I was diagnosed with Vulvodynia I was in a terrible relationship with someone I like to refer to as a man-child. I was blamed and scorned for my pelvic pain and often accused of lying.
When I was finally diagnosed- I was without healthcare, as I have been much of my life and not sure what to do next. For the next 2-½ years I struggled with the fear of dating again and getting accused of lying or scorned for my condition. I felt like I lost all my options and it was one more layer of hopelessness to the existing challenge of growing up in a stunted and abusive family and never having a voice.
Doctors who “say” they treat Vulvodynia are often a nightmare and add one more layer of crap to the pile- however, when I found the Sexual and Pelvic Health Institute- it all changed.
My first appointment was lengthy where we went through the official diagnosis, perinometry reading and skin examination. Get this- they didn’t stick a speculum up me- wanna know why??? Because my vagina has nothing to do with Vulvodynia- it’s about the vulva!!! Yeah, wish other doctors knew that.
Anyways, during this first visit my doctor gave me a hand mirror and she said, “I want you to see what I see when I explain it to you…”
I said, “no way! This is awkward!”
She told me, “ There is no way you will be my patient if you do not do this- you have to learn to stop disassociating with the pain. You have to come back from it!”
From then on- I have been a faithful patient and always happy to go to my visits because I know no matter how I feel or what my day is like- she will remind me that the struggle is worth it and it will be ok.
I had an appointment this past Wednesday and it just so happened that a physician from the Mayo Clinic in Minnesota was shadowing her for the week in order to learn from the Institute. The Pelvic Health Institute is an innovative practice that not only compounds medicines you can never dream of- but they take their time to explain and educate all of their patients. Every visit my doctor and I discuss where I am, where should I be heading and what we both think are ways to get there.
On this particular visit she was explaining to me a cream that we might try in a few months. This cream was discontinued for a long time, not because of it’s lack of efficacy but because of the symptoms associated with it. Supposedly, women with Vulvodynia and also burn victims have a build up of P Substance in the inflamed areas that are toxic substances created due to inflammation and sickness. The cream serves as a treatment to remove the P Substance from the skin. My institute brought this treatment back to life and 81 other clinics followed. My doctor explained to me- “clinics criticize us constantly because the cream causes burning during the application and treatment.” Other doctors say, “ Why would you cause more burning for these women”.
The funny thing was- she didn’t even have to tell me. Because I know, the true path to control and empowerment of patients living with chronic pain is not to protect us from the hard things but to treat us and teach us how to gain control and live a healthy life.
Vulvodynia Monoblog 