(above is picture of Betnezol cream and insertion method)
I’ve been diagnosed with primary provoked vulvodynia/vestibulodynia. Basically meaning, I have had vulvar and vaginal pain since birth when my vulva and/or vagina are stimulated (unprovoked would mean that a woman gets pain out of nowhere, without any stimulation). Although I only noticed when I got my first period, and tried to insert a tampon, to no avail, as it was too painful. My first thought: “Oh, it just doesn’t fit” and I grabbed a pad and thought nothing of it. I tried to use a tampon several times after that, with no success and again thought the same thing: that I was too small and they were too big. Deep down, I must have known something wasn’t right though, I was embarrassed in gym change rooms when I had my period because I had a pad on, I was too scared to ever touch myself in my vaginal area, sometimes I was too scared to even look. The pain made me terrified of my own vagina. Again, I must have known subconsciously that something was wrong, I rarely let my first boyfriend ever touch my vulva and we were together just over a year. My second boyfriend (and current partner) and I did not attempt intercourse until 2 years into our relationship, because I was scared of sex, but why would I be scared if I didn’t know I had pain? My first time was definitely painful, but wasn’t everyone’s? I told myself it was normal, until we tried again, and again, and again and again… always painful, sometimes to the point where I’d cry and have to stop part way through.
It was a fluke and a horrible experience the way I learnt something was wrong, before I had intercourse with my partner, I went to the doctor because I felt I had a bacterial infection; we booked an appointment and all was fine. I came back for the appointment and was told I was also going to be getting a pap smear, I panicked. I had never had sex before, why were they giving me a pap? I made these points clear to my doctor but he insisted, to this day I don’t know if he believed me or not. The whole clinic must have heard me scream, it was the most painful experience of my life. That’s when the wheel got set into motion. Something wasn’t quite right.
A quick side note: I probably make my doctor sound like a horrible guy, and in that moment I believed he was, but he has been extremely supportive since and genuinely set on helping me find a treatment that works! He is open to naturopathic solutions, diets, massages, medications, therapists, physiotherapists, anything at all that may help relieve my symptoms. Even though that initial experience was horrible, I’m glad it happened, because I may never have come to terms with my pain if it hadn’t, and now I have a super invested doctor who does as much as he can to help me through everything.
He helped me find a gynecologist after that to get a proper examination done. He was also a great doctor, very empathetic and gentle, his exam was much less traumatizing (although still painful) than my first pap smear. Instead of the pap test though, he performed the Q-tip test, where he tests to see if I feel pain when I shouldn’t on my vulva. And I did. He also was very invested in helping me find treatment and tried everything he knew! First he prescribed to me Lyric and Xylocaine cream, telling me most of his patients with vulvodynia have a significant reduction in symptoms when combining the two. I tried the Lyrica for a couple of months, and hated it. Firstly, I had no reduction in pain, and secondly the side effects were harsh! I would drive to university, and not remember how I got there, I was in a fog all the time, and had virtually no memory. I stopped taking it when I realized what it was doing to me. The Xylocaine (lidocaine) cream was minimally helpful, I would recommend it only if your underwear is causing you pain one day or something, but it did not reduce any pain for vaginal penetration or vulva stimulation.
My gynecologist was very surprised when these did not work for me, so then we decided to try cortical steroids, not the ingestible kind either because he was worried about the side effects. I had to get a specially compounded Betnezol prescription from my pharmacy, and every night for two weeks, I had to insert two bottles of this Betnezol into my vagina. They were white bottles, about the size of a pop can, with a thin insertion tube longer than my middle finger. Some nights were worse than others, but in general this was also a traumatizing and challenging experience. It also didn’t work. And again, he was surprised, and running out of ideas.
He had one more treatment up his sleeve. He was starting to doubt it was vulvodynia, and starting to think it was inflammation. He also wasn’t convinced the Betnezol wouldn’t work, he didn’t think I was getting enough of the liquid compound within my vagina for long enough. So this time, I was prescribed a higher dose of Reactine (the allergy medication that apparently reduces inflammation) along with another prescription for a compounded Betnezol cream! Every night for two weeks I now had to insert a hollow tube filled with this cream, the diameter of my thumb and twice the length of my middle finger, and pump the cream into my vagina. Surprise surprise, it did not help.
At this point I had spent hundreds of dollars on these unsuccessful treatments and no farther ahead than before. This is when he referred me to a program a couple hours away to see if their treatments could help me.
This blog will be like a diary of my appointments and treatments to come. I want to help other women like me. I will post my experiences, my research – articles on treatments, and anything else I find might be helpful or informative! I’m not a great writer, just someone suffering from this pain who wants to get through it, be informed about it and hopefully help other women through it too! One day we’ll find out why vulvodynia occurs, how to treat it and how to prevent it. Until then we have each other and only our own experiences to help get us through.