Anonymous guest post

At the tender age of 23, I feel like the long list of possibilities that should await me has been unfairly cut short. For years I have suffered from an unbearable itch that just can’t be scratched; an intense pain between my legs that feels like flames burning my skin. I have Lichen Sclerosus (LS), a chronic skin condition that causes my vulval skin to violently react to any form of friction. From washing to walking, to wearing certain types of clothes or having sex, my vulva becomes inflamed. It burns an angry red and swells. The skin becomes incredibly sore, fissures and cracks appear on its surface. Eventually the skin scars and the architecture of the vulva, such as the labia minora, become fused together. The clitoris becomes buried. Untreated LS results in the gradual loss of vulval architecture, sex becomes virtually impossible and there is also an increased risk of developing vulval cancer.

I first began experiencing symptoms of LS when I was 9 years old. I remember violently itching myself and crying hysterically to my mum. She would grab me bags of frozen peas from the freezer and soak towels in ice cold water to try and numb the itch. This was to no avail and I was up all night agitated from the itch that just wouldn’t go away. I went to the doctors with these symptoms and every time I was told that I had thrush. I was prescribed a cream to treat the symptoms and sent on my way.

Over my teenage years, the symptoms simmered down. This is a common course of disease for those with LS before puberty and sometimes the symptoms never appear again. Unfortunately for me, the beast reared its ugly head when I began having sex. By the age of 18, my symptoms started to increase in severity. My skin was constantly irritated, and the lacy underwear I insisted on wearing only further exacerbated the problem. I was adamant that something wasn’t quite right. I decided to attend my local GUM clinic, they carried out a full sexual health screen and told me that my irritated skin wasn’t an STI. It was just ‘overly sensitive’ and the result of washing with harsh scented soaps. They recommended I use an emollient cream to wash and suggested I come in every few weeks. This cycle continued for 6 months. My skin didn’t improve – in fact, it seemed to be getting worse, and sex became less and less appealing. I was told that I wasn’t complying with their advice and no further appointments were booked. I felt frustrated for being dismissed, but thought ‘doctors know best.’ I shrugged off my concerns and convinced myself that my problems were minor and I wasn’t doing anything to help them.

Fast forward to two years later, I had managed to establish a long-term relationship with someone and decided to live with my symptoms on a daily basis. He suggested that I shouldn’t be suffering like this, and he mentioned that the appearance of my vulva had changed significantly since the beginning of the relationship. I was shocked. I made a GP appointment and was swiftly referred to a dermatologist.

I attended my dermatology appointment and was met with an unsympathetic pervy male doctor. As soon as I sat down on the chair in the consultation room, the doctor stared at my breasts. It was incredibly unnerving and I felt so uncomfortable. I didn’t know how to respond. The last thing I wanted was to show this doctor my vulva. But I felt compelled to do so. I don’t know why. Maybe it was my desperation for a diagnosis. He diagnosed me with LS as soon as he saw my skin. He stated it was a ‘textbook case’ and the scarring and loss of my labia was irreversible. I felt a wave of despair surge through my body. I was angry at myself. Why hadn’t I taken this more seriously? How did I not notice these dramatic changes to my vulva? He prescribed me Elocon, a steroid cream, to control the inflammation. As soon as I closed the door behind me, I burst into tears. I sobbed uncontrollably down the phone to my mum. She dropped everything to come and pick me up from the hospital.

I followed the consultant’s directions for a month, but my symptoms continued to worsen. I was experiencing flare ups weekly. I was struggling to wear clothes or walk without discomfort. I headed back to the hospital, only to be met with blame. I was told that I wasn’t following his directions and he didn’t understand why I was ‘behaving this way.’ I felt belittled. I refused to attend another appointment and asked for a referral to another dermatologist.

I was hopeful that the female dermatologist I was going to see would be far more understanding of the difficulties I was experiencing. She continued to prescribe me the same steroid and stated that a lot of the pain I was experiencing was ‘psychological’, and the complex nature of my diagnosis meant that a lot of my issues were in my head. My concerns about the loss of my labia were met with dismissal. Apparently, I shouldn’t be worried about things that are in the future. I am clearly an ‘anxious person.’

At this point, I was sick of the condescending attitude that doctors were taking towards my concerns. I had attended an unrelated appointment for another issue. The doctor who was examining me felt they should give me some unsolicited advice about my skin. He told me that my symptoms would greatly improve if I had more sex with my partner. I was horrified. I hadn’t asked for his advice. He had no right to say that, considering how painful it was for me.

By January 2020, my symptoms were unbearable. I was constantly itching. I couldn’t concentrate on my uni work, sleep or have sex without discomfort. I was having mental breakdowns daily. I found an LS specialist in Birmingham and attended her clinic, only to be told that the steroid I had been prescribed the past few years was incorrect. The BDA guidelines for LS hadn’t been followed by any of the dermatologists I had seen previously. She prescribed me a long list of creams to use daily and a very potent steroid to control my LS – no wonder I’d been having constant flare ups!

After months of intense treatment, my symptoms are finally becoming better managed. I hope my experience demonstrates why doctors should improve their understanding of an under-researched, underfunded and often undiagnosed disorder. Moreover, my experience is not an uncommon one for women with LS. I was, and often am, still told by doctors that I am ‘too young to have LS’; my diagnosis and personal experiences are routinely questioned. I have suffered so much unnecessary pain, purely because I am a woman. When doctors take the Hippocratic Oath, they are supposed to do no harm. From my experiences, all I see is years of preventable physical and emotional harm.