There are two main reasons that it took so long for me to get a diagnosis:
- Pelvic pain in women is very common, and there are lots of things that could cause it.
- The autoimmune condition at the root of my pain is quite rare. Lichen Planus affects 1 – 2% of the world population . I have erosive lichen planus, which is chronic and even rarer.
However, there’s another slightly more sinister reason: the medical community treats women’s pain differently . Women are 3 times more likely to suffer autoimmune disorders  (which often result in chronic pain) than men, wait longer to receive pain relief in emergency rooms , and are more likely to be prescribed sedatives than pain relief .
Why am I bombarding you with links? Because women’s personal experience is usually dismissed. This was absolutely my experience on my chronic pain journey. When I reported physical changes in my body, I was told that I was still “within normal range” and thus ignored. When I reported pain, doctors asked about my emotional state. My older male partner was routinely given more respect than me; he could literally repeat something I had said, and the attending doctor would suddenly take it seriously.
During the period of my illness, I was too unwell, too low on “spoons”  to deal with this bias; I simply didn’t have the energy to fight anything other than my illness. But now that I’ve recovered, the reality of what happened to me makes me furious.
The simple fact that the first specialist I was referred to was a psychosexual therapist is enraging. I presented with pain, and the primary focus from medical professionals was making sure my boyfriend could put his dick in me again. His sexual pleasure was instantly more important than my pain, and thinking about it now makes me livid.
At one point, several years into my illness and frustrated with the lack of knowledge in the general practitioners I was seeing, I paid £250 for the privilege of seeing a private doctor in London. He spent 10 minutes in the room with me, looked at the A4 sheet containing a summary of my medical history that my boyfriend had put together, and confirmed my GP’s diagnosis of Vulvodynia . Vulvodynia, meaning literally “pain in the vulva”. And that was it. I was told that the problem could be in my vulva, a physical problem, or it could be in my brain; they didn’t know which, and there was no real way to find out.
I was offered surgery to cut away the parts of my vulva that hurt, but with no way of knowing if there was anything wrong with that tissue, or if the trauma of surgery would make things worse, I declined. The doctor recommended antidepressants and sent me home. I was assured that eventually, it would go away on its own.
Vulvodynia itself is a debilitating condition. I struggled hugely at university. The medication I was on made me foggy and sleepy; I struggled to focus on my classes and writing essays was torturous.
One moment that stands out to me is when I was trying to write a marketing essay for my course. I spent ages staring at a blank Word document, watching the caret (the text cursor) flash, before realising that time had slipped away and I’d lost over an hour. Struggling to form sentences in my head, I decided that coffee was the solution. Maybe caffeine could cut through the fog and wool in my head. I went into the kitchen of the tiny flat that I shared with two friends. I took a cup from the cupboard and filled and switched on the kettle. Then I froze. I couldn’t remember what came next.
Cup – kettle. Kettle – cup. I knew I needed both of these things. But I couldn’t remember what the next step in the process of making coffee was. I lost more time in the kitchen; I genuinely can’t say how long I stood there, staring forlornly at the kitchen countertop, before my housemate arrived home, took pity on me, and made me a coffee. I laugh when I tell this story because it’s utterly ridiculous, and also because it’s better to laugh than to cry. The truth is, it’s scary to be so unable to count on your brain to function.
It was around that point we decided that I shouldn’t leave the flat on my own. I kept forgetting where I lived, and where the University was. For several weeks, until I changed medication, my housemates took turns escorting me to and from my lectures.
My then-boyfriend recommended that I talk to Student Services about getting help with my studies. I visited the disability officer but was told that unfortunately, there was nothing they could do. Pain itself doesn’t count as a disability in UK law, and since most of my problems were side effects from my medication rather than symptoms of my illness, I didn’t qualify for assistance. I didn’t qualify for extra time on assignments or study aids like a dictaphone to help me take notes. The best thing they could advise was for me to drop out and come back when I was better.
I had already given up so much for my pain; I refused to let it cost me my education. I came off of the pills that were causing my cognitive decline, tolerated increased pain and achieved a first-class degree. I am immensely proud of myself for this achievement, but the fact is that I should never have been put in the position of needing to choose between living in pain or accessing education. How many people in my position would not have been able to choose to be in more pain just to finish their degree?
Vulvodynia affects more than 1 in 7 women . Endometriosis affects 1 in 10 women in the UK , and fibromyalgia affects 7x more women than men . Millions of women all over the world are living with chronic, debilitating pain. And there just isn’t enough research. One thing that vulvodynia, endometriosis and fibromyalgia have in common is that doctors still don’t know what causes them, and there isn’t a cure. Women are just expected to live in pain.
I take solace in the fact that there are more and more stories like mine in the news every day. More than 13,500 women took part in a BBC study on endometriosis , the largest study of its kind. Similar conditions, such as vulvodynia, are also in the media much more frequently than they were when I was diagnosed. I sincerely hope that with more awareness of these conditions and the debilitating impact that they have, more funding will become available for research, treatment, and maybe even cures.
Until then, I’d encourage any woman living with pain to seek help, and don’t be afraid to keep asking for help until you get an answer. Because I promise you, you are not alone.
 The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain, 2001, Maryland University https://www.nytimes.com/2013/03/17/opinion/sunday/women-and-the-treatment-of-pain.html