Lichen Sclerosus & Menopause

Perimenopause and Menopause Lichen Sclerosus Awareness

Lichen sclerosus (LS), a long-term skin condition, is most commonly diagnosed in post-menopausal women and pre-pubertal children. It is a condition mainly affecting skin around the genital area but can also affect upper arms, back, breasts and shoulders.

It is unclear why lichen sclerosus affects peri and postmenopausal women. It is thought that it may be related to an overactive immune system, with genetics, or infections potentially playing a role.

Vulvar lichen sclerosus is not infectious. It is a chronic inflammatory disease affecting genital labial, perineal and perianal areas. For many women it can cause significant itching, burning and discomfort, leading to psychological distress. Left untreated, in a small number of cases, this chronic painful skin condition has the potential to develop into cancer.

Unfortunately, lack of awareness of lichen sclerosus by women themselves, and some health professionals, can lead to a delay in diagnosis due to late presentation and lack of recognition of symptoms.

We take a look at the symptoms and share one campaigning woman’s journey of lichen sclerosus in perimenpause.

What are the symptoms of lichen sclerosus?

According to a recent article published in the British Journal of General Practice, LS is now estimated to affect 1 in 70 women. Whilst LS is not a rare condition, it is under-reported and under-recognised. Symptoms of LS can include:

• Extreme itchiness, soreness, burning, splitting, or tearing of skin

• Bruising, blood blisters and ulcers appearing after scratching

• White crinkled or thickened patches of skin prone that may scar

• Pain and discomfort during sexual intercourse which may result in painful tears

• Changes to the genitalia - clitoris becomes buried, labia shrinks or fuses together

• Passing urine causes stinging and irritation

Living with lichen sclerosus

Tina Seager, 40 years old and perimenopausal, has been living with LS for the last two years. She contacted us in her quest to share her story and raise awareness of lichen sclerosus in menopause.

Tina’s story

My case, mistaken for thrush at first, started out of the blue two years ago with vulval itching. I was first examined by a nurse and given thrush medication which did not work. My thrush and urine tests came back negative.  Eventually, I saw a Women’s Health GP who diagnosed LS. I requested a hospital referral but due to the waiting list did not see a specialist until six months later.

It’s important to be seen by someone who is trained in LS as not all GPs and nurses are trained in vulval conditions. Once correctly diagnosed, prescription treatments include strong steroid ointment to be used for life to prevent symptoms advancing and developing cancer; emollient skin washes and protective barrier creams to be applied every time you go to the toilet.

There is a small cancer risk but mainly if the condition is left untreated for a long period. It is clear that more research is needed on how LS causes cancer and more treatment options are needed for this other than surgery.

I was lucky mine was caught early. Despite being in a lot of pain due to vulval soreness and swelling affecting my walking and sleeping, my main symptoms, the consultant said many women coming through were in a worse state than me. However, they did find irreversible minor skin changes. I came away relieved that I had asked for that hospital referral when first diagnosed by the GP.

As yet there is no cure for LS. For me, steroid ointments have only put it into remission and it can flare up again at any time.  When this happens, increasing the steroid ointment dose can bring it back under control but it does take time. 

During my journey I found a Facebook forum run by Lichen Sclerosus and Vulval Cancer UK Awareness . For me, this is a really useful source of emotional support and practical advice on how to manage my condition. The forum is a lifeline to so many of us who live with this chronic pain condition - the emotional and mental health support is vital in helping us to cope, day to day.

Please sign Tina’s petition to fund research into lichen sclerosus

When I realised misdiagnosis of LS is so common, I decided to start a petition asking the UK government to fund research into LS, and increase funding to improve awareness and treatment of this condition:

https://petition.parliament.uk/petitions/632780. If you could sign and share this please, that would be brilliant!

Tina has until 9th Aug 2023 to raise over 10K signatures for a government response. More awareness of this condition is needed especially amongst health professionals.

Tina now checks herself every month for vulval changes and signs of vulval cancer and needs yearly checkups. Her takeaway from this experience is that it’s so important to get any vulval changes checked and if symptoms don’t respond to thrush treatment, please see a health care professional for a check up.

July 2023

This article is awareness-raising only. It is essential to consult a doctor or other medical professional for medical advice, diagnoses, or treatment.

Read our related review of the brilliant book, ‘Me and my Menopausal Vagina’, by Jane Lewis, a long-time sufferer of severe vaginal atrophy.