This intimate problem’s often mistaken for the first sign of menopause

This intimate problem’s often mistaken for the first sign of menopause,

Thousands of women with a devastatingly painful intimate itch condition could soon be offered a revolutionary treatment that can tackle many of the symptoms in weeks.

Lichen sclerosus affects more than 300,000 women in the UK – leaving them with dry and fragile vulval tissue that often tears.

The condition, which often goes undiagnosed, can make sex difficult and also raises the risk of vulval cancer.

There have so far been few effective treatments – but researchers at the Royal Free Hospital in north London now believe they have developed a solution: taking fat tissue from the stomach or thighs and injecting it into the vulva.

Early studies suggest that the radical fat transfer procedure works in eight out of ten cases, ridding patients of pain and allowing them to have a normal sex life.

One patient who has already benefitted is Maria Tether-Jenkins, 53, from Haywards Heath in Sussex, who developed the condition when she was just 11.

‘I was in constant pain,’ says Maria, who runs a supplement company with her husband. ‘The skin was always tearing, it was like having loads of little paper cuts.’

However, it was not until Maria was 28 that she was diagnosed by a specialist with lichen sclerosus.

Maria Tether-Jenkins, 53, from Haywards Heath in Sussex, developed the condition when she was just 11

Lichen sclerosus affects more than 300,000 women in the UK – leaving them with dry and fragile vulval tissue that often tears

She was prescribed steroid cream, to be applied twice a week.

But Maria says the cream had only a limited effect. ‘The symptoms would get better for a bit and then I’d have another flare-up,’ she says.

And as she got older the pain worsened. ‘By the time I was in my 40s I could barely function,’ she says. ‘Sex was too painful and I couldn’t even give birth to my son Max naturally, as there were worries this would worsen my symptoms. I was in a really desperate position.’

Then, in 2021, Maria read about the fat treatment on a lichen sclerosus blog.

Believing it might help, she contacted Professor Peter Butler, a plastic and reconstructive surgery expert at the Royal Free Hospital, who is running a major trial, called PETALS, of the procedure. Professor Butler agreed to recruit Maria to the trial and, in July that year, she had the operation.

Maria was placed under general anaesthetic and fat was removed from her stomach.

The fat was then purified in a laboratory in order to get a concentrated dose of stem cells, which help boost tissue healing. Then, using very small needles, the concentrated fat was injected into the vulval tissue.

Maria says that when she awoke her stomach was bruised but other than that she had no side effects.

She was discharged from hospital and told to refrain from sex for six weeks. Within a matter of weeks, however, Maria experienced a remarkable improvement in her symptoms. ‘I went from constant pain and tearing to barely any issues at all,’ she says.

Professor Peter Butler, a plastic and reconstructive surgery expert, recruited Maria to his PETALS trial

‘I noticed the tissue was no longer grey and cracked but pink and healthy-looking.

‘I was nervous the first time I had sex after that, but I couldn’t believe how good it was.’

Lichen sclerosus is an autoimmune disease, which means it occurs when the immune system begins to attack healthy tissue. In this case, it damages the vulva.

In rare cases it can also affect men, leading to inflammation and sensitivity in the foreskin.

Experts say the condition was once considered rare but growing evidence shows it is in fact under-diagnosed. This is because it is often mistaken for other conditions, such as thrush or the menopause.

‘This is an often devastating condition but it can take some time for doctors to diagnose it,’ says Professor Butler. ‘This is also partly because many patients find it difficult to talk openly about their symptoms.’

Experts say it is unclear what triggers lichen sclerosus. It usually affects post-menopausal women or begins in childhood. Over time it can raise the risk of vulval cancer – about 4 per cent of women with it will go on to develop the life-threatening disease.

Professor Butler says the theory is that the fat transfer, also known as fat grafting, is effective because the stem cells appear to reverse scarring in the vaginal tissue – known as fibrosis. However, more research is needed to definitively answer why it has such a profound effect.

He says the next step of the trial, backed by the British Society for the Study of Vulval Disease, the Royal Free Charity and the National Institute for Health and Care Research, will be to expand it to other hospitals.

Professor Butler adds that the treatment is not a cure. The improvements are only temporary, he says, meaning patients will likely need to repeat the procedure. They also need to continue to apply steroid cream twice a week.

However, according to Maria, who is due to have her second fat transfer later this year, every woman struggling with lichen sclerosus should consider having the operation. ‘It’s such a relief not to have my life ruled over by this condition any more,’ she says. ‘This has absolutely changed my life.’

• Patients who have been diagnosed with lichen sclerosus can enquire about the trial at petalstrial.co.uk