Living with Lichen Sclerosis

I used to roll my own cigarettes. The paper was thin and if it got too damp it would become fragile and tear.

I was 24 when my labia began to tear. I couldn’t tell you how long the soreness had been going on for, but some days even wearing underwear would rip my skin. Squatting in front of a hand mirror, I traced the weeping sores, the white patches and previous wounds that had healed badly. With skin so fragile, the edges pulled together tightly and brought lots of skin with them. 

My labia had become fragile and white and tore like damp rolling paper.

The internet told me it was lichen sclerosis (also referred to as lichen sclerosus), that it was a condition of post-menopausal women. I asked the nurse when I had my IUD inserted, but she told me to go to the sexual health clinic. There, I sat with my numbered ticket, surrounded by posters about condom use and spotting the signs of syphilis. This didn’t feel like the right place. My number was called.

The doctor was firm, but kind. I told her my suspicions and she confirmed the diagnosis after an examination. She gave me a brown bag filled with clobetasol ointment, emollient soap substitute, and metronidazole for my recurrent bacterial vaginosis (‘There’s no point in you bothering your GP all the time’). Medicines are free from the sexual health clinic, but not from the GP, so I appreciated this kindness. 

‘Come back in six months,’ she said. ‘You have an increased risk of vulval cancer.’ Back on the internet later, I found the doctor I had seen had published many articles on lichen sclerosis. I was relieved to be in the hands of an expert. 

I returned twice a year for the next two years. Making the appointments was easier than even seeing my GP. I called the sexual health centre, asked for the doctor by name, and would be booked in that week. I left every time with my brown bag of medicines. Until one day when I called to ask for the same doctor and was told that she’d retired, and there was another gynaecologist, and did I really need to see her? I booked an appointment. A local newspaper article celebrated the first doctor’s retirement and she beamed from her manicured garden.

This was destined to be an uncomfortable appointment, because I’d not been using my clobetasol as much. It was frustrating to apply ointment that came off whenever I used the bathroom and it would tear the skin if I applied it too cold. The new doctor examined me and told me things weren’t looking as good as they should, and I confessed. She launched into an explanation of why the clobetasol was important to preserve my vulval architecture. She drew diagrams. She gave me leaflets. I was a student nurse and I knew her job in that moment was to explore why I wasn’t taking it. I sat quietly and waited for my brown bag. ‘No,’ she said. ‘You have to get that from the GP.’

I told her sex had become unbearably painful. She handed me a tube of lidocaine and told me to apply it to my vulva so that I could be numb and tolerate sex. I left the consulting room in silence, limply gripping the lidocaine. I couldn’t fathom the concept of being numb to tolerate sex.

I waited a year to book my next review. I was told the doctor I had last seen had left and did I want to book an appointment with the next gynaecologist? This doctor was young and gentle. She told me that my vulval architecture was entirely preserved; I had seen it wasn’t, the first doctor must have recorded that it wasn’t, and the current doctor didn’t know what it looked like before. Perhaps she was trying to reassure me. Again, I asked for my brown bag, and again I was told to go to my GP. She asked me to book my next review and I told her I was moving to another city because I’d been accepted to medical school.

‘Oh, no,’ she said, but left the thought at that and went on to tell me my reviews could be annual from now on, and probably just performed at the GP, but that there was a vulval dermatologist in my new city (she had trained there).

I didn’t know what her ‘oh, no’ meant, although I think of it every time medical school drives me down. 

Shadowing in a gynaecology clinic recently, I overheard a junior doctor (or resident) tell a patient that she might have lichen sclerosis because it is a condition of post-menopausal women. Once the patient had left, I told him that that wasn’t strictly accurate. The consultant (equivalent to an attending in the states) said it mainly affects pre-pubertal and post-menopausal women. I told her:

‘I know that it doesn’t only affect those age groups, though, because I have it. I was diagnosed at 24. But that’s the only reason I know it. Lichen sclerosis is a core condition on our curriculum, but we’ve had no teaching on it.’

The doctor explained the competing interests of academic curricula versus clinical workload, but the consultant shut him off: ‘This is why so few good students are attracted to gynaecology. They aren’t taught from the start.’

I couldn’t have told you how long the soreness had been going on for before I sought help for my lichen sclerosis, but 3-4 years before I was diagnosed, a boyfriend told me my vulva looked and felt different. I went to see the nurse at my GP surgery, who went to get a second opinion and left me alone in the consulting room with my feet in stirrups and a light directed at my vulva. More ‘second opinions’ arrived, and I remember gazing at the nursing staff crammed between my knees like a curious Mount Rushmore. I was diagnosed with genital warts and told to inform any sexual partners. My boyfriend and previous sexual partner denied having had it. My boyfriend left me. I felt disgusting. Sometimes I wonder if this was my first opportunity to have been diagnosed with lichen sclerosis.

I live with lichen sclerosis. It is well controlled, mainly with strong emollients, rarely with clobetasol, and never with lidocaine. My skin isn’t fragile and white anymore. It rarely tears like rolling paper now.

Story by Felicity Allman

@felicityallman

Previous Article


Leave a Reply

Your email address will not be published. Required fields are marked *