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Vulval cancer: why regular health checks are vital

Menopause and women’s health nurse Victoria Howell explains why vulval skin checks should be routine in general practice

Menopause and womens health nurse Victoria Howell explains why vulval skin checks should be routine in general practice

  • Many women experience discomfort and pain for years due to lack of knowledge about vulval health
  • Looking for signs and symptoms and checking vulval health should be part of routine primary care
  • Nurses need to be aware of issues to improve care and ensure vulval cancer is picked up early

Lack of knowledge around vulval health conditions can cause many women years of misdiagnosis, discomfort and pain. Lichen sclerosus (LS) and vulval cancer are two vulval conditions that many may never have heard of, including healthcare professionals.

During a 20-year nursing

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Menopause and women’s health nurse Victoria Howell explains why vulval skin checks should be routine in general practice

  • Many women experience discomfort and pain for years due to lack of knowledge about vulval health
  • Looking for signs and symptoms and checking vulval health should be part of routine primary care
  • Nurses need to be aware of issues to improve care and ensure vulval cancer is picked up early
A nurse in conversation with an older female patient
Picture: Alamy

Lack of knowledge around vulval health conditions can cause many women years of misdiagnosis, discomfort and pain. Lichen sclerosus (LS) and vulval cancer are two vulval conditions that many may never have heard of, including healthcare professionals.

During a 20-year nursing career I had not heard of these conditions, and did not know about them until the last couple of years, despite having worked in primary care.

This lack of knowledge about the vulva, which is a woman's external genitals, including the lips surrounding the vagina (labia minora and labia majora), the vulva vestibule, Bartholin’s glands, the urethra and the clitoris, means opportunities to pick up potentially life-threatening conditions are being missed.

Regular appointments offer opportunity to check on women’s routines and vulva health

Awareness of both these conditions, the signs and symptoms they have, when to check the health of the vulva and to ask women about any changes, could easily be made more routine in primary and women’s healthcare.

This means that practice nurses and GPs in particular need a basic understanding of the conditions and when and who to refer women on to in secondary care.

Regular appointments such as cervical screening, contraception reviews or blood pressure checks offer the opportunity to ask women about their routine when it comes to checking the health of their vulva.

Women affected by lichen sclerosus may experience years of pain and itching, and find sex and going to the toilet painful

Lichen sclerosus or LS is a skin condition that causes itchy white patches on the genitals or other parts of the body.

Women affected will often experience years of pain and itching, and find sex and going to the toilet painful.

Women with LS have discussed with me how they have experienced decades without a diagnosis or appropriate care, with their concerns dismissed or overlooked by primary care staff.

There is no cure, but if it is properly diagnosed regular treatment with steroid creams can relieve and manage symptoms.

Numbers affected by lichen sclerosus are not known, as it often not recognised or diagnosed

Women with the condition should only wash the area with suitable emollients, not soaps, and there are some vulval moisturisers that can be used if the vulval skin is dry.

LS, which is believed to be an autoimmune condition, is classed as a rare vulval condition, but increasingly it is being acknowledged that the numbers affected are simply not known, as it often not recognised or diagnosed.

Women who seek medical help are often told it is thrush or cystitis, and are not physically examined.

Picture shows a cervix examination
Cervix examination Picture: iStock

This cycle leads to women self-medicating with over-the-counter thrush or cystitis treatment, meaning the cause is never identified.

As thrush treatment includes low doses of steroid that will give small initial improvements, but these quickly fade.

Lichen planus (LP), another inflammatory skin condition that nurses should be aware of, can occur anywhere on the body, including the vulva and vagina.

With lichen planus some women may have fusion of the vulva, which can lead to painful urination

The symptoms include erosive areas to the vulval skin, papules and lesions. Patients may also report burning, stinging and painful intercourse. They may have a thick yellow or green discharge, which can look like an infection but is the shedding of the skin of the vagina.

Women affected may have fusion of the vulva, which requires close monitoring as it can lead to painful urination. As with LS, it is important to support the emotional and mental well-being of the patient, as the condition can be extremely painful and is chronic.

These conditions require long-term management and therefore long-term well-being support.

Lichen sclerosus symptoms

Lichen sclerosus (LS) is a skin condition that causes itchy white patches on the genitals or other parts of the body.

There is no cure, but treatment can help relieve symptoms. Though LS affects people of all ages, including children, it is much more common in women over 50.

It causes patches on the skin that are usually itchy, white, smooth or crinkled and easily damaged – they may bleed or hurt if rubbed or scratched.

The patches can appear anywhere, but most often are on the area around the opening of the vagina (vulva) and anus in girls and women, and foreskin and end of the penis in boys and men.

(Source: NHS)

More women are being diagnosed with vulval cancer at an early age

Women who have LS and LP also have a slightly higher risk of developing vulval cancer, though less than 5% of women with LS go on to develop this rare cancer, according to Cancer Research UK.

About 1,300 women a year in the UK are diagnosed with vulval cancer, and just over 440 die from the disease, the charity says.

While about 80% of diagnoses are in women over 60, the charity Eve Appeal says increasingly more women are being diagnosed at a younger age.

Vulval cancer most often affects the inner edges of the outer lips (labia majora) or the inner lips (labia minora) with signs including a lasting itch, pain, soreness, a lump, growth or sores that won’t heal.

Vulval cancer symptoms

Symptoms around the vulval area can include:

  • A lasting itch
  • Pain or soreness
  • Thickened, raised, red, white or dark patches on the skin
  • An open sore or growth visible on the skin
  • A mole that changes shape or colour
  • A lump

Other symptoms include:

  • Burning pain when passing urine
  • Discharge or bleeding, not related to periods
  • Lump or swelling in the groin

(Source: Cancer Research UK)

It can also appear in the perineum area. Some women first develop abnormal cells, a condition called vulval intraepithelial neoplasia (VIN), which may develop into cancer.

About 50% of cases of vulval cancer, especially among younger women, are thought to be connected to the human papilloma virus (HPV) , which can infect the skin in different parts of the body, including the vulva.

HPV can pass from one person to another by skin to skin contact, and during sexual contact.

Around 80% of the UK population will have the HPV virus at some time during their lifetime.

Illustration of female genitals from Science Photo Library
Picture: Science Photo Library

Healthcare professionals must be trained to recognise vulval skin conditions

All healthcare professionals working in women’s health need to be trained in recognising vulval skin conditions.

If this was the case, many women would receive better treatment at the right time, improving their quality of life.

But one study that examined medical textbooks identified an absence of accurate descriptions of female genitalia, suggesting many healthcare professionals may not know what normal vulvas look like.

Eve Appeal resource introduces a range of vulval conditions

The Eve Appeal has published a resource for all those involved in the care of women and girls, called an Overview of Cancer of the Vulva.

The cover of Eve Appeal's An Overview of Cancer of the Vulva booklet

This provides a reminder of normal genital anatomy and introduces a range of vulval conditions, with an emphasis on the holistic care of those experiencing them.

Vulval skin checks are not routinely undertaken in general practice, and they desperately need to be.

It can be a difficult area of the body to discuss, and it may be a bit embarrassing for nurses and patients. But the more we talk about it, the more normal it will become.

Cervical screening offers a chance for a vulval skin check

For practice nurses, it makes sense to have the vulval skin check introduced into the clinical process of undertaking cervical screening.

While explaining the cervical screening process to the patient, the nurse should ask if they have experienced any burning or itching of the vulva and if they have noticed any pain or any other differences in it.

The nurse should obtain consent to examine the vulva before the speculum part of the procedure.

Nurses should explain to their patients that they will be looking for changes such as lumps, tears, discolouration or ulcers.

This is another chance to ask women if they have had any discomfort or itching or if they have noticed anything different about their vulva.

Women are recommended to do a self-examination between periods

The examination of this area will take clinicians only a minute or two. This is a good opportunity to educate women on why and how they should check their vulval skin regularly, similar to how women are encouraged to check their breasts.

Cancer Research UK recommends that women do a self-examination between periods in one of the following ways:

  • Sit comfortably on a bed or mat, spread your legs and hold a mirror so you can see the outside of your genitalia. Use the other hand to spread the labia.
  • Place a magnifying make-up mirror on a closed toilet seat. Stand over the toilet with a leg on either side of the toilet. Use both hands to spread the labia, or use one hand to spread the labia and the other hand to steady yourself.

Women should be encouraged to examine the whole area from the pubic mound (mons pubis) to the anal opening, including both sets of labia, the clitoris and the vaginal opening.

The pubic mound is the rounded, fleshy area above the pubic bone. Look over each area for anything that seems abnormal, then feel each area for lumps under the surface, which may be visible.

Illustration from Eve Appeal’s Overview of Cancer of the Vulva
Illustration from Eve Appeal’s Overview of Cancer of the Vulva

Women should look for lumps, nodules, bumps, warts or sores (ulcers) and changes in skin colour – areas that are red, irritated, white or darkly coloured. Any changes should be reported to a health professional at a well-woman clinic or sexual health clinic, or to a GP or practice nurse.

The earlier vulval problems are detected, the easier they are to treat

Women need to be aware that the earlier vulval problems are detected, the easier they are to treat. It is recommended that women check their skin in this area monthly, so that they have a baseline and know when changes happen.

Women with LS and LP should check their vulva on a weekly basis.

Raising awareness is vital to ensure that vulval cancer is picked up at the earliest, and most curable, stage

For postmenopausal women who are receiving less frequent cervical screening, other routine appointments with a practice nurse can be used to ask about vulval skin health, including blood pressure checks.

When women are diagnosed with LS they can be referred to vulval dermatologists if specialist care is required.

This care needs to be included in clinical guidelines and nurses should make it part of routine appointments.

Raising awareness of vulval health problems among healthcare professionals and women is vital to improve care in this area and ensure that vulval cancer is picked up at the earliest, and most curable, stage.

‘The taboo about mentioning the vulva needs to change’

Despite decades of vulval discomfort, Clare Baumhauer did not discover she had lichen sclerosus until she was diagnosed with stage three vulval cancer at the age of 43.

Clare Baumhauer
Clare Baumhauer

Before this she had not heard of either condition, but after her diagnosis she realised she had had symptoms of LS since she was a young child.

She had been to a GP regularly about the itching and pain she experienced. Ms Baumhauer was misdiagnosed as a child with cystitis, and then repeatedly told as an adult that she must have thrush.

‘I was told my symptoms were menopausal vaginal dryness’

‘During my late thirties a swab and blood test were taken. This came back clear and I was told my symptoms were menopausal vaginal dryness and given no support or medication,’ she says.

‘I was not referred on for further tests. I had regular smear tests. However, nothing was observed by the nurses regarding my vulva, although I had typical signs of LS.’

‘I was having regular smear tests and nothing was noted by the professionals’

A few years later she got a tear in her vulva which did not heal and turned into an ulcer.

‘I was still having regular smear tests and still nothing was noted by the professionals,’ she says.

Illustration from Lichen sclerosus and Vulval Cancer UK Awareness

Once it got bigger and harder for me to sit, due to pain, I went back to a see a GP. Initially I was told it was herpes and to go to a genitourinary clinic. I must have looked shocked, so the doctor examined me again and said it could be vulval cancer.’

Ms Baumhauer struggled and failed to find much information on vulval cancer or LS, so she started her own support group, Lichen sclerosus and Vulval Cancer UK Awareness.

‘Many people are embarrassed to use the words vulva and vagina’

Along with Emma Norman, who also has LS, she started the #KnowYourVulva campaign on Twitter and Instagram to raise awareness of the importance of vulval health and monitoring.

‘I felt very alone,’ says Ms Baumhauer, who received successful chemotherapy and surgery.

‘Before my diagnosis I had not heard the word vulva, I had referred to my vulva as a vagina, like many others. Many people are embarrassed to use the words vulva and vagina, and because of this it has become a taboo. This needs to change so vulval conditions get the awareness that they deserve.

‘So many women who have had vulval cancer and will tell friends and relatives that they had cervical or gynaecological cancer instead of stating the word vulva.’


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