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Journey to vulvodynia diagnosis

“ It was 2007, and I had just moved to Tampere to start my studies. On the very first day of school, my attention was drawn to a boy with black, fluffy hair and a picture of my favourite band’s lead singer on his T-shirt. ”

“Looking back over the past ten years, things could have been better for me. My biggest regret is that I didn’t talk to anyone about my illness in the initial years.”

It was 2007, and I had just moved to Tampere to begin my studies. On the very first day of school, my attention was drawn to a boy with black, fluffy hair and a picture of my favourite band's lead singer on his T-shirt. A little over a month later, this fluffy-haired guy was practically living with me. We were both very horny and passionate young people in our 20s. Very soon, however, we noticed that not everything seemed to be going normally with sex. From one month to the next, I experienced a burning, stabbing pain every time we had intercourse, a feeling which usually eased slightly during the act. I wanted to find out what was causing the pain, so I took it up with the student health service applying for a prescription for birth control pills. This started a three-year journey of unravelling the "what's wrong with me" mystery.

I went to the student health clinic several times because of persistent yeast infections and problems with birth control pills, and each time, I tried to address the recurring intercourse pain. Within a couple of years, the pain started to get worse, and so did my despair. I booked an appointment with a private gynaecologist using an entire month's food budget. The diagnosis given by the gynaecologist was depressing: no physical problem, all the pain was in my head and a mental problem. Fortunately, I refused to believe this and instead googled my symptoms and tried to find information online. I eventually ended up on a vulvodynia website, where I read the symptom descriptions and had a total epiphany: I have vulvodynia. 

I was almost 100% sure of my self-diagnosis, but I still needed confirmation from a doctor. Back again to the student health centre, where I ultimately had a crying fit and refused to leave until I was referred to the TAYS Central Hospital. 

In 2011, I was admitted to TAYS, where my pain finally got a definite name: vulvodynia, more specifically vestibulitis, or more aptly vestibulodynia, "which refers to pain in the vaginal vestibule, the area around the vaginal opening." (Source: http://vdopas.com/vulvodynia/vulvan-vestibuliittisyndrooma-vestibulodynia/) TAYS had a special vulvodynia team and a care pathway for people with vulvodynia. The treatment path included many things, such as physiotherapy of the pelvic area, electrotherapy, a trial of gabapentin cream, and pain spot tolerance therapy. Other symptoms of vestibulodynia, such as persistent yeast infections and urinary problems, were also treated.

I was relieved to finally know what was causing my pain and what I was battling. But at the same time, I felt very alone. I had never heard of vulvodynia and didn't know anyone who had it. I felt like a freak, an incomplete and failed woman. The years before and after my diagnosis were emotionally difficult. At TAYS, I had a few opportunities to talk to a sex counsellor, but that was all the support I received during those years. After my self-diagnosis, I found out about an email list for people with vulvodynia through the vulvodynia website. This became my lifeline for a while: not only was I not alone, but I was able to connect with other people suffering from the same condition and we were able to share experiences together. That unstructured, vague email list was my only peer support, and I attended two meetings we organised in Tampere. It was great to meet nice people who understood what I was talking about and share experiences, but the meetings were pretty bleak. There was no one to lead the discussion, so the meetings were mostly about unloading bad feelings and negative experiences. Although, of course, there were good moments and positivity, too.

I completed the TAYS treatment path, but the treatments didn't benefit or even affect me very much, so I ended up on the surgery waiting list. The intercourse pains were so bad at this point that I cried every time and even physically felt sick because of the pain. The operation, a vestibulectomy, was performed in late 2012. 

Today, my situation is much better. Unfortunately, despite the surgery, I was left with a few pain spots, and they are treated every three months at Turku University Hospital with botulin. I also have regular physiotherapy in Helsinki with a private physiotherapist. The amount of pain varies, but for the most part, intercourse is almost always successful when using an anaesthetic. 

Looking back over the past ten years, things could have been better for me. My biggest regret is that I didn't talk to anyone about my illness in the initial years. The shame was so overwhelming that I couldn't even say a word about it to my best friends. It was only after I was referred to surgery that I told a couple of friends and my parents. If I could change something afterwards, I would break the silence that lasted for years. If I had spoken up and shared my grief, that black lump of shame and sadness would not have grown so big. Secondly, if the health professionals I met with had been more informed or aware of vulvodynia and its symptoms, I probably would have received a diagnosis and treatment without a delay of several years. 

I am no longer ashamed of having vulvodynia. Letting go of the shame and being much more open about my vulvodynia has certainly had the most positive impact on my mental wellbeing. And by the way, the same fluffy-haired guy (whose hairstyle has changed radically in the last ten years) stood by me, and luckily, our sex life turned out pretty damn amazing!

Asta’s name has been changed.

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