There's so much secrecy and stigma surrounding our vulvas, vaginas and general reproductive health that many women put up with unbearable physical and emotional symptoms for years out of embarrassment. Burning pain, insatiable itching and all-consuming shame can undermine their daily lives, relationships and long-term goals.
One little-known disease with such effects is lichen sclerosus, a skin condition causing itchy white patches on the vulva and anus in girls and women (boys and men can also contract the disease, which affects their penis). In severe cases, scarring on the vagina walls can cause it to shrink and tighten, making sex painful and difficult at best and impossible at worst.
The causes of the non-contagious disease are unknown and there is no cure. Estimates from the British Skin Foundation and British Association of Dermatologists suggest that anywhere between 1-3% of women in the UK are living with the condition, but spokespeople from both organisations told Refinery29 that the true figure is likely to be far higher. Women in their 50s are most likely to receive a diagnosis, but it occurs at all ages.
Throughout my childhood, from about 4 or 5 years old, my vulva either burned like it was on fire or itched like I had an infestation of flea bites. Often, it was both simultaneously. I remember being in a classroom in my first year of school and crying hysterically because of the pain. I didn’t want anyone near me and was screaming at them while crying. The burning and itching continued into adulthood and I knew something wasn’t right.
I'd feel sick with worry about what my future held and whether I'd be able to have children or a normal relationship.
It had a huge negative impact on all aspects of my life. I became depressed and I avoided relationships as I knew I couldn’t have sex. I'd feel sick with worry about what my future held and whether I'd be able to have children or a normal relationship; I'd try to convince myself that it would be okay after I was married and that I could tell any prospective partner that I didn’t believe in sex before marriage. I was in so much pain I had to hold tissue on my vulva to stop the burning while urinating. My social life faded and I lost contact with the friends I made throughout school. I became lonely and isolated myself from the world. I worked but never spoke about what I was going through and I spent all my time at home in my bedroom alone in the dark, mostly crying.
When I eventually started dating someone at 21, he realised immediately that something wasn’t right. We couldn’t have sex and I was petrified to let him try. When we did try, he could barely get his penis inside my vagina – I felt like I was being ripped apart, the burning increased and I would bleed slightly, the pain was relentless and didn’t ease. We stopped trying after a couple of attempts. This was the first time I opened up about what was happening. I don’t think he fully understood; neither did I so I couldn’t blame him. He talked me into seeing my doctor and the relationship ended after a couple of months.
The nurse couldn’t fit the smallest speculum inside me.
I didn’t tell anyone that I'd booked a GP appointment, not even my family knew. I tried my best to explain what was happening to me, the symptoms and the fact I couldn’t have intercourse. He examined me and advised me to have a smear test to see if anything was going on. It was during this appointment that I knew something was horrifically wrong. The nurse tried to do the smear test but stopped and said she was sorry but my vaginal entrance was so small that she couldn’t fit the smallest speculum inside me. She asked me if I'd been abused as a child as I had a considerable amount of bruising. I told her no, I hadn’t and she spoke to the doctor. I was barely out of the doctors' surgery when the emotions hit and I sobbed uncontrollably all the way home. Eventually I was referred to the gynaecology department at my local hospital.
The hospital consultant examined me and took a biopsy to confirm his suspicion. Within a week he called to say I had lichen sclerosus and that he needed to do another biopsy to check for pre-cancer changes. He then referred me to a London hospital as he wasn’t best equipped to treat me. During my three-day admission, this hospital treated me using dilators – a set of eight plastic medical instruments that range from size one, the size of a small finger, to size eight, the size of a penis.
I thought of myself as a freak, that I wasn’t normal and never would be.
On the first day, a member of the team inserted size one – the pain was unbelievably intense and I remember seeing blood on it. I was petrified. A few hours later she came back with size two, then size three; by this time I was begging her to stop. She called it quits for that day. It took me an hour of sitting on the toilet each time to urinate that day. The next day, she returned with size three for starters and ended on size five. At that point I called my consultant in Northampton and told him I couldn’t take it anymore. He was horrified that they were inserting the dilators and at the rate they were doing it. Within an hour the staff came to see me, apologised and discharged me. I never went back. Instead I was referred to a gynaecological oncologist in Northampton.
It was good getting the diagnosis and knowing the problem was medical and not something I was imagining. I'd never heard of lichen sclerosus before and my consultant printed off information for me to read. As soon as I saw the link to cancer I was petrified and convinced myself it was going to kill me. My depression became really bad and I thought of myself as a freak, that I wasn’t normal and never would be, especially as there's no cure.
My life is better now. I've had steroids and numerous operations over the years to control the symptoms. It was comforting knowing I was being monitored for any changes that could be cancerous. I've since been discharged and left to monitor changes myself, which is scary, but I’m in a better place to cope with it now. I don’t have a partner as sex is still unbearable and hurts for weeks to months after. I wouldn't rule out the idea of a relationship, but I'd need to sit him down to explain the disease and how sex would be off the table 90-95% of the time. I still have flare-ups, I can still tear my skin from wiping after urination and I still get burning and itching that can last for days or weeks.
I have a 5-year-old daughter who I'm so thankful for. I had her via C-section as doctors were worried about the damage that having a vaginal birth would do to me and possibly to her. I was monitored by the consultant who diagnosed me [with LS] throughout my pregnancy, so I felt safe being pregnant and there were no problems during the pregnancy. But it's heartbreaking knowing I won’t be giving her the brother or sister that she and I both want.
"Lichen sclerosus is a chronic inflammatory, scarring skin condition which can affect any part of the body but in females, most often affects the vulval and the skin around the anus," explains Dr Emma Edmonds, consultant dermatologist and spokesperson for the British Skin Foundation. The exact prevalence and age breakdown of women with the disease is unknown, but many believe it's underestimated as the symptoms and signs can be subtle and misdiagnosed. Dr Edmonds estimates that up to 3% of women may be affected but that the true figure could be far higher.
"It can occur at all ages and not infrequently affects pre-pubertal children," says Dr Karen Gibbon of the British Association of Dermatologists. "When this happens it's possible for the condition to go unnoticed or be inadequately treated and not diagnosed correctly. Hence women presenting in their 20s and 30s should be carefully asked about how their skin was when they were younger."
Chronic itching and soreness of the vulva are the most common physical symptoms of lichen sclerosus, both of which can become worse at night, says Dr Edmonds. "The skin may become sore if it tears or breaks down. In the genital area, the scar-like process can cause tightening, which can interfere with urination and sexual intercourse." The skin on the vulva "has a shiny, porcelain-white appearance which can become raised and thickened. Skin fragility may cause bruising, blistering or erosions."
The psychological impact of the disease shouldn't be underestimated. Nearly nine in 10 (89%) of those surveyed by the British Association of Dermatologists and the Association for Lichen Sclerosus and Vulval Health about the social, professional and emotional damage of vulval health conditions said their condition had affected their emotional and mental wellbeing; 42% said it had affected their social life, 79% said it had affected personal relationships, and 39% said it had affected their work life.
"Embarrassment, emotional trauma, and physical pain are common themes among women with vulval health conditions," says Dr Gibbon. "It’s important that women are able to talk about vulval conditions without fear of stigma."
Lichen sclerosus and cancer
While the exact link between lichen sclerosus and cancer "has not been defined", Dr Edmonds says, there is a small increased risk – between 3.5-5% – of developing a skin cancer in affected areas in the vulva. "These can look like lumps, ulcers or crusted areas. If you are a smoker, stopping smoking will reduce your risk of cancer."
Preventing the disease
The causes of the disease are unknown, but genes and the environment are both thought to play a potential role. Women can make lifestyle changes to reduce their likelihood of contracting it, says Dr Edmonds. "General genital health measures may be helpful such as avoiding using soap, feminine wipes and using a barrier cream to avoid contact between the genital skin and irritants such as urine in sensitive areas."