Living with Lichen Sclerosus

When I turned 40 years old I expected in the not too distant future to be dealing with menopause like any woman would, however, I did not expect to also be living with Lichen Sclerosus.
Lichen Sclerosus is a chronic painful skin condition which has the potential to turn into cancer. It most often affects genital and perianal areas, however, can be anywhere on the body. LS can affect anyone and it can start at any age, although it is most often diagnosed in women over 50. Pre-pubertal children can also be affected.
LS is actually not a rare condition despite being unheard of but under-reported and under recognised yet now estimated to affect 1 in 70 women according to a recent article in the British Journal of General Practice.

How you get LS is currently unknown, but it is believed to be an autoimmune disorder but more research is needed. LS is not infectious nor due to poor personal hygiene.

Symptoms can include:
– Being extremely itchy, soreness, burning, splitting, tearing
– Sometimes bruises, blood blisters and ulcers appear after scratching or from minimal friction
– Sexual intercourse can be very uncomfortable and may result in painful tears
– White crinkled or thickened patches of skin that tend to scar
– Clitoris may be buried
– Labia may retort/shrink
– Labia fusing together
– Urine can sting and irritate

My case was mistaken for thrush at first and started out of the blue two years ago with vulval itching, I was examined and given thrush medication first by nurses which did not work. My thrush and urine tests came back negative. Yet I felt like every time I passed urine it was like acid burning my vulval skin where it became sore. Eventually, I saw a Women’s Health GP who examined me and diagnosed LS. I requested a hospital referral which was agreed upon but was not seen until 6 months later as there is a waiting list to see a specialist.

It’s important to be seen by someone for a physical examination who is trained in LS as not all GPs and nurses are trained in vulval conditions. It is also important to use the correct terminology to describe your anatomy when describing your symptoms, especially being in the age of phone appointments and e-consults. Vulval conditions and gynae cancers such as vulval cancer need to be discussed more openly so more women get the correct treatment and support. I hope one day that Vulval cancer will be talked about more openly the same as breast, skin and bowel cancer for example.
Once correctly diagnosed prescription treatments include strong steroid ointment needing to be used for life to prevent advanced symptoms and cancer, and emollient wash and a barrier to put on every time you go to the toilet to protect skin.

There is a small cancer risk but mainly if the condition is left untreated for a long period, more research is needed on how LS causes cancer and more treatment options are needed for this other than surgery which hopefully will come in time from more research of the condition.
I was lucky mine was caught early despite being in a lot of pain myself with vulva soreness and swelling affecting my walking and sleeping which were my main symptoms. The consultant informed me a lot of the women coming through were in a worse state than me. However, the consultant did find irreversible minor skin changes. I came away relieved that I asked for that hospital referral when first diagnosed.
LS sadly has no cure, as the steroid ointment only puts it into remission, and it can flare at any point. You need to increase the steroid ointment when this happens to bring it back under control which can take time.

During my journey, I found one of the Facebook forums run by Lichen Sclerosus and Vulval Cancer UK Awareness https://www.lsvcukawareness.co.uk who now give me emotional support and practical advice on how to manage my condition. This is a lifeline to so many including myself living with a chronic pain condition as emotional and mental health support is vital with coping with this day-to-day.

When I realised misdiagnosis of LS is in fact common, I decided to start a UK government petition to ask the UK government to Fund research for a cure of LS, and increase funding to improve awareness and treatment of this condition my link is. To sign the petition, go to https://petition.parliament.uk/petitions/632780

More awareness of this condition is needed especially amongst health professionals. Sufferers also need more help with our emotional well being and mental health.

I now check myself every month for vulval changes and signs of vulval cancer and need yearly checkups.
My takeaway from this experience it’s so important to get any vulval changes checked and if you don’t respond to thrush treatment, please see a health care professional to be checked.