Topic
My vestibulodynia journey
Hi everybody! I have been struggling with vestibulodynia for a number of years now and wanted to share my story. I am a 24 year old woman with a diagnosis of primary provoked vestibulodynia likely from hormonally mediated and/or neuro-proliferative causes. I first noticed the pain when I was fifteen. I had an ovarian cyst that was causing a lot of discomfort and the doctor attempted to preform a pelvic exam. It hurt like crazy! The doctor could not complete the pelvic and we both just assumed it was because I was not yet sexually active. I was also (and still am) very physically active and was quite annoyed at my inability to insert a tampon (ever try to do windsprints wearing a sanitary napkin? Yeah, it’s about as bad as you’d expect). Every time I tried it hurt so bad I had to stop. I did not consult with anyone about this because I assumed I was somehow “doing it wrong” and would figure it out.
At 17 I started using birth control. I was not yet sexually active but wanted to be prepared in case, you know, the opportunity presented itself. I initially started using the patch but it made me feel so nauseous all the time I had to stop. I then started on a low-dose oral contraceptive. I also made me feel ill if I took it on an empty stomach but ended up staying on it for about two years. I first became physically intimate at age 18 with my then-boyfriend. It hurt a lot every time we tried and we never did achieve insertion. He was always nice about it though. Once I was in college I started regularly going to the university health services center regarding my vulvar pain. They didn’t really know what to do with me there since they were so used to treating the typical “young woman” problems – STIs, UTIs, etc. I went through a number of nurse practitioners and a couple gynecologists before I found one I felt took me seriously. The other NPs and two doctors all told me they couldn’t see anything wrong down there, that I needed to practice relaxing and it would go away. I was even asked some very leading questions regarding previous sexual abuse “including maybe something you just barely remember.” I was never sexually abused. During college I met other young men and went on some dates. I always felt I had to be guarded about sex though, because I couldn’t do it. Guys would ask me back to their places and I typically begged off, saying I had a test or really should be going even if I kind of wanted to see more of him. I attempted intercourse with one particularly sweet young man during my sophomore year. I warned him about my problem ahead of time and he promised to take it slow. He did, but it still hurt so bad we could not have any insertive sex. During my junior year I began seeing my current boyfriend. I told him penetration caused me a lot of pain beforehand, so he was always very gentle about sex. We tried insertion but I still couldn’t do it. Also my junior year I finally found a gynecologist at the UHS that didn’t think my problems were in my head, even if she didn’t know much about the condition. I first encountered the term “vulvar vestibulitis” in her office. She gave me estradiol and some steroid creams to try, but I think I was allergic to the estradiol base. It hurt so bad! I ended up sitting in a tub of ice and discontinued use. The doctor thought that physical therapy might help too, but I couldn’t find a physical therapist in town that a) I could afford and b) dealt with vulvar pain. She also prescribed me a tricyclic antidepressant (amitriptyline) to help tone down the pain response in my vestibule. It took the edge off the pain but made me super sleepy all the time. I used it for about six months and eventually discontinued use around finals time.
Side story: when my doctor first started talking about physical therapy, I thought this kind of physical therapy was something most PTs could do even if they didn’t advertise it much. I called the university physical therapy center, which I had free access to because I was a student athlete, and asked about therapy “for the pelvic region.” The confused young woman on the phone asked if I had injured my hip and I responded “no, like for my vagina.” She hung up on me.
After college I moved out to San Diego and started working in science :). I tried to find a new gynecologist to help with my pain at Sharp-Rees-Stealy. I went through two doctors. The first didn’t know what might help and referred me to the second. The second doctor was a total dickhole and told me I “would just have to deal with some increased sensitivity down there.” Seriously, wtf. I wasn’t really sure where to turn after that – I had been through so many doctors and no one seemed to know what to do. I couldn’t find a doctor on my health insurance list that had any experience with vulvodynia. My boyfriend was (and still is!) super understanding of my problem and we had non-insertive sex regularly, but we weren’t looking forward to doing that for the rest of our lives. Finally I threw caution (and health insurance) to the wind and googled “San Diego Sexual Health.” Honestly I don’t know why I didn’t do that from the get-go. Of course Dr. Goldstein’s practice was the first hit so I called, did the phone consultation, and set up an appointment for two weeks later. At the appointment Dr. Goldstein told me my testosterone was pretty low, and my sex hormone binding globulin was high. He did an exam and found I have some mild sensory neuropathy in the pudendal nerve – ie I have trouble feeling heat, cold and vibration down there, and my labia minora are about 20% reabsorbed. He also gently touched the glands around my vestibule with a q-tip and recorded my pain response (summary: ouch!). In the end he diagnosed me with 1) primary provoked vestibulodynia likely from hormonally mediated and/or neuro-proliferative causes; and 2) testosterone insufficiency syndrome. We are initially pursing a conservative plan. I am applying estradiol in emu oil in order to help regrow the absorbed tissue – hopefully no allergic reactions this time! Also I will be injecting myself with testosterone once a week. I should get the testosterone next week so I haven’t begun injections yet. If the conservative treatment doesn’t help we will consider a vestibulectomy, but first things first.
About me: when I’m not laying with my feet in stirrups arguing with doctors, my hobbies include fencing, running, cycling (I have a special bike seat with a hole in it for my vagina – for reals!) taking care of my dog, reading and science. I’m a huge nerd and when I watch tv I love the discovery channel. I am currently suffering from Lost withdrawal and wore a Dharma jumpsuit for Halloween.
I hope to record my progress here, so ya’ll are welcome to follow along ;). Thanks for reading and good luck everyone with your vestibules!