Understanding Lichen Sclerosus

Lichen sclerosus is often overlooked, but a new clinical trial is aiming to improve awareness and treatments for the skin condition. Contributing reporter Ellen Cummings explores the issue

Lichen sclerosus (LS) is a chronic inflammatory skin condition that predominantly affects the genital area which is widely misunderstood and frequently misdiagnosed. As International Women’s Day falls in March, the conversation around women’s health is more relevant than ever, making it the perfect time to shed light on LS – a condition that disproportionately impacts women and often leaves sufferers feeling isolated and unheard.

Dr Shirin Lakhani, a GP, aesthetics practitioner, intimate health expert and founder of Elite Aesthetics in Kent, is on a mission to change this. Currently leading a clinical study exploring new treatment options, she is determined to improve the standard of care for LS sufferers and raise awareness about a condition that has long been overlooked.

ISSUES WITH DIAGNOSIS

LS primarily affects women, although men are also susceptible. Symptoms of the condition include white patches on the vulva, itching, burning and tearing of the skin. One of the most troubling symptoms is the intense and unrelenting itch that can interfere with daily activities, from wearing certain clothing to simply going about day-to-day life.

Dr Lakhani, who is an expert in treating LS, explains, “LS is not something that people talk about an awful lot. It’s a skin condition that mainly affects the genital area – the vulva, perineum and anal area in women. In men, it affects the penis, particularly the foreskin, but it can also occur on the shaft and glans.”

Unfortunately, LS is not easily diagnosed, and many patients are misdiagnosed with conditions like thrush, as their symptoms can initially resemble fungal infections – and the conditions can coexist. As Dr Lakhani points out, “Women who experience symptoms tend to go to their doctors and get misdiagnosed as thrush. This is one of the things I wanted to raise awareness about.”

RAISING AWARENESS

Amy Ford, a 33-year-old mother-of-one from Essex, is one of the many women who have struggled to receive a proper diagnosis for LS. After experiencing persistent symptoms, including intense itching and painful skin patches, she was initially misdiagnosed with thrush. Despite her growing discomfort, her GP continued to prescribe anti-fungal treatments, even though they did not improve her condition. “I felt like I had been dismissed and was confused and upset,” Ford recalls.

After six weeks, Ford returned to the hospital and saw a different consultant. “He took one look at me and said he didn’t know what I was worrying about but that I just had an irritated vulva and to use some vaginal moisturiser. He said it didn’t look like LS but I could have a biopsy to put my mind at rest,” she says.

Ford then had the biopsy, followed by a letter from the consultant, which said, “I am pleased to confirm you have a condition called LS and I will now remove you from the cancer pathway.”

Ford says, “I found the choice of words very bizarre, especially when he initially had categorically said I didn’t have LS, but then told me he was pleased to confirm my diagnosis. Having the condition is bad enough but being made to feel silly and dismissed by the doctor made it so much worse.”

Ford’s experience mirrors that of many LS sufferers. Dr Lakhani emphasises that the condition is often under-recognised and under-reported. She explains that “LS can be very difficult to diagnose, and too many women are suffering without the appropriate care or recognition”.

Dr Lakhani advocates for a more thorough understanding of LS within the medical community. She stresses, “If left untreated, LS can destroy the architecture of the vulva, causing fusion of the tissue. The clitoris can become completely buried, and the vaginal opening can become narrow or completely fused, making it difficult to urinate or have intercourse. This condition can progress to cancer if left unchecked.”

THE EMOTIONAL IMPACT OF LS

Aside from the physical discomfort of LS, many women also experience psychological distress. The condition often causes a significant decline in the quality of life, including affecting sexual relationships and social interactions.

For Ford, this has been one of the most challenging aspects of the disease, with her often struggling to play with her two-year-old daughter due to the discomfort, which has also affected her career: “I was in a lot of pain all the time, severely itchy and severely sore. I had just started a new job, and I was crying every day before work and felt awful mentally and I cut myself off socially from others,” she says.

Dr Lakhani recognises the emotional toll that LS can take. “The psychological impact of LS is significant,” she says. “It affects relationships, mental health and self-esteem. People are often made to feel embarrassed or ashamed of the condition because it affects such an intimate part of their body. It’s crucial that we create more awareness and open the conversation around it.”

THE IMPORTANCE OF PROPER CARE

There is currently no cure for LS and it’s unclear what causes it, but the condition can be managed. Ford’s condition deteriorated despite her repeated visits to doctors, and it was only after finding Dr Lakhani through an LS Facebook support group that she started to see improvement. Dr Lakhani, who is currently conducting a clinical trial to explore new treatment options for LS, is leading the way in investigating alternative therapies that could help manage the condition more effectively.

One such promising treatment is fractional radiofrequency (RF) and microneedling, specifically InMode’s Morpheus8V device. Dr Lakhani explains, “Current treatment options for LS include topical corticosteroids, immunomodulators, and sometimes surgical interventions, but there is a need for alternative therapies. Morpheus8V is a promising treatment that combines fractional RF with microneedling. Our clinical trial aims to evaluate its efficacy in the management of LS.”

For Ford, who is currently participating in Dr Lakhani’s clinical study, this treatment has offered some relief. “After the first treatment, I felt like I was doing really well,” she says. “I am not expecting a miracle cure, but I would like to relieve some of the symptoms and for people to listen.”

Dr Lakhani’s clinical trial aims to explore new avenues for treatment, with the goal of improving outcomes and developing evidence-based treatment guidelines. Dr Lakhani’s determination to provide more effective care and her advocacy for increased awareness are making a significant difference for women like Ford.

“We need to raise awareness about this condition, and we need to ensure that more doctors take it seriously,” Dr Lakhani insists. “There is not enough being done for sufferers, and we need more research and better treatment options.”

HOPE FOR THE FUTURE

As we mark International Women’s Day, it is essential to recognise that conditions like LS deserve more attention. The stigma surrounding intimate health issues often prevents women from seeking help, and when they do, they are too often dismissed.

Dr Lakhani’s research represents a step forward, but there is still a long way to go. Raising awareness, improving education for healthcare professionals and ensuring better treatment options are all vital in transforming the landscape of LS care.