My husband and I haven’t had sex for THREE years after he thought he found toilet roll stuck to my lady bits
FOR three years, Susan Guest has been deprived of sex with her husband.
The couple, who have been together for over 40 years, are devastated – desperate to reignite their physical relationship but fear they may never make love again.
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It wasn’t until Susan’s husband noticed what looked like a piece of toilet roll stuck to her vulva, that their ordeal began.
“I feel like I have lost everything because of this. I don’t feel feminine or sexy anymore,” the 60-year-old tells Sun Health.
“I still feel like a young woman in my head, and it is a scary thought to think I may not be able to be intimate with my husband ever again.”
Not long before her husband’s discovery, Susan had begun to notice a tightness during sex.
While it caused her pain, she had no idea of the cause.
“Then my husband thought I had a bit of white tissue stuck down below,” she explains.
“I took a closer look and noticed that my labia was covered in dry, white patches.
“That’s when I also saw an ulcer.
“The disturbing thing was that I never felt any symptoms from the ulcer, it wasn’t sore despite being open and raw.”
Feeling a panic rising within her, Susan immediately called her GP and booked an emergency appointment.
But her panic didn’t end there.
“They told me I had to be referred to the hospital to rule out vulval cancer.”
There are around 1,350 cases of the disease diagnosed in the UK each year, according to leading women’s charity, The Eve Appeal.
Around 80 per cent of cases are detected in women over the age of 60, but anyone with a vulva (which includes the clitoris, labia and vaginal opening) can be diagnosed at any age.
The good news was the white patches and ulcers weren’t yet cancer.
After seeing a gynaecologist, who took a biopsy, Susan was diagnosed with lichen sclerosus, an incurable skin condition that can increase the risk of vulval, penile and anal cancers.
Sex can prove painful because the condition can cause the vulva to shrink or tighten.
And in men, it can cause the foreskin to tighten, making erections agonising.
Susan says: “The sad thing was that even those working within the hospital department seemed to have little knowledge of the disease.
“The awareness of it was very poor.
“I was advised after my urgent appointment that I would be seen every six months, but it took 13 months to get a second appointment, never mind one every six months.”
Due to the fact lichen sclerosus isn’t typically ulcerative, and the presence of an ulcer on Susan’s vulva, she was referred for a second opinion – to rule out cancer, for a second time.
Further tests brought relief, no cancer was detected and doctors prescribed a steroid cream to ease and manage the symptoms.
WORKING AROUND IT
But for Susan, who is retired and has a grown-up daughter, the condition has dramatically altered her sex life.
“I haven’t been able to be intimate with my partner for three years now as it is just too painful to have sex,” she says.
“My lichen sclerosus is progressive making my vaginal opening narrow and spreading to my anogenital area (including the perineum, the space between the genitals and anus).
Just some form of intimacy is the goal and although the disease can’t be stopped, I would like to be able to just slow it down
Susan
“I am constantly sore and although I am lucky as my husband and I have been together for 40 years, it doesn’t make the fact that we can’t be intimate together any easier.”
With sex off the cards, the couple who have been married since 1982, have had to find other ways to be intimate with one another.
Susan says communication has been a vital part of navigating the impact on their sex life.
What is lichen sclerosus, and could you have it?
Find out the causes, symptoms and long-term complications of lichen sclerosus…
Lichen sclerosus is a long-term skin condition that’s more common than you’d think. It is manageable, but can make life miserable at times.
LS tends to show up in women after menopause (when periods have stopped for one year, usually between the age of 45 and 51 years), though it can also make an appearance in men and children.
Women are the most commonly affected, however, and it typically targets the genital and anal areas.
No one knows for sure what causes it, but it’s suspected that an overactive immune system might be to blame, possibly mixed with hormonal imbalance or genetic predisposition.
It’s not contagious.
Symptoms
- Severe itchiness
- White patches on the skin
- Thin, fragile skin that tears or bruises easily
- Pain or discomfort during sex, peeing, or pooing (depending on the area affected)
- Scarring or shrinking of the skin over time
If left untreated, LS can cause scarring and tightening of the skin. In rare cases, there’s also a small risk of developing skin cancer in the affected areas, so it’s important to keep an eye on things.
If you suspect LS, see a GP who could potentially refer to a dermatologist. They’ll likely prescribe creams to calm the inflammation.
While LS isn’t curable, it’s manageable.
It’s worth being aware of symptoms ‘down there’ that may indicate something else, such as vulva cancer. These are:
- Persistent sores or ulcers that don’t heal – if the skin looks raw or there’s an open wound that lingers for weeks, it’s worth getting it checked.
- Unusual lumps or bumps – any new growths or thickened areas in the affected skin could be a red flag.
- Changes in appearance – if the white patches or scars suddenly look different or more aggressive, it’s better to be safe than sorry.
- Bleeding without an obvious cause – occasional bleeding from fragile LS skin isn’t unusual, but be wary of unexpected or frequent bleeding.
- Pain that’s out of proportion – discomfort that escalates or feels different from your usual LS symptoms.
“My husband doesn’t put pressure on me or act like sex is the be all and end all,” she adds.
“As a couple you need to communicate, be patient and kind and work out how to make it work for you both.
“We just cuddle now, it is the love and affection that is our intimacy.”
“I am very lucky, my husband is very understanding and patient and we have a good, solid relationship.
“A lot of women in my support group have seen their marriages break down.”
While lichen sclerous cannot be cured, strong steroid creams do tend to ease symptoms.
CHANCE MEETING
But it was a chance meeting on a train with Dr Farzana Khan that filled Susan with hope.
“We got talking and when she told me what she specialised in, I burst into tears at the realisation that maybe this was the support and help I needed, and had been looking for.
“It felt too good to be true.”
Dr Farzana claims to be the only doctor in the north of England who specialises in offering bespoke, private treatment for women’s intimate health conditions – including vaginal dryness, sexual dysfunction, stress urinary incontinence.
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And to Susan’s great relief, she also offers treatment for lichen sclerosus.
Since their fateful meeting, Susan has undergone two courses of platelet-rich plasma (PRP) therapy, also known as ‘Vampire’ therapy, as well as two courses of Asclepion Erbium YAG laser.
Dr Farzana tells Sun Health: “PRP is a non-surgical treatment designed to rejuvenate the vulva and vagina using your own plasma rich in growth factors.
“When PRP is injected into the vaginal area, it promotes the healing of the vaginal tissues and improves the quality of the vaginal walls.
“PRP also enhances vaginal lubrication and sensitivity in the clitoral complex and can help treat symptoms such as dyspareunia (painful sex), vaginal dryness, and lichen sclerosus.
“Women who have had the PRP vaginal rejuvenation treatment have been shown to have enhanced sexual benefits including improvement in sex drive, arousal, vaginal dryness, vaginal itching, and lichen sclerosis symptoms.
“Patients usually need a course of two to three PRP treatments 4-6 weeks apart and then one treatment as annual maintenance to slow down the progression of the disease.
“The PRP treatment can be combined with laser therapy such as Erbium YAG laser which works well for moderate to advanced disease.”
Dr Farzana added: “Susan has had two courses of PRP with two courses of Asclepion Juliet Laser.
“The aim is to improve her symptoms, improve lubrication, reduce itching, and allow her to be intimate without being in pain.”
Susan said: “I was nervous at the thought of the treatment as I hate needles, but it was fine with no downtime after.
“I have had three treatments with Dr Farzana at her clinic and it has been life changing.
My skin down below is much better and has returned to pink, rather than white and I have felt much more comfortable in general.
“I met a lady at Dr Farzana’s clinic who also suffers from lichen, and she has since been intimate with her partner which fills me with hope. I feel there needs to be more awareness of other treatments .
“For me, just some form of intimacy is the goal and although the disease can’t be stopped, I would like to be able to just slow it down and feel better in myself in general.”