“If a doctor or nurse had recognised the symptoms I would have been diagnosed much earlier and been using the steroid, so I might not have got cancer as there is only a 5% chance of Lichen Sclerosus turning to cancer if the skin is left to thicken, and the cancer would not of had time to spread to stage 3 Cancer. I would not have had to have radiation which caused all my life changing side effects. If I had known about LS and Vulval cancer I would have gone back to the doctors and not given up going” says Clare Baumhauer, of Lichen Sclerosus and Vulval Cancer Awareness UK. There were many missed opportunities before Clare was diagnosed with Stage 3 Cancer, she adds “If the nurses that did my smear tests had been trained in LS and vulval cancer. If midwives had also been trained in LS and Vulval cancer then it would have been diagnosed on one of the multiple times I’ve seen a nurse or midwife”.
There are more than 3 new Vulvar Cancer cases every day in the UK and while it is considered relatively rare, incidence rates are rising and notably now in younger women too (Wiggans et al., 2019). 69% of Vulval Cancer cases are preventable according to research. (Vulval cancer statistics | Cancer Research UK, n.d.)
Lichen Sclerosus, an inflammatory skin condition, which primarily affects the vulva also carries a risk of developing into Vulval Cancer. The risk is estimated at 5%, however this number could be significantly higher due to a lack of knowledge among some medical professionals who may misdiagnose the symptoms presented to them as thrush. Steroid treatment has been shown to prevent cancer developing so it is imperative to seek medical advice early (Lichen Sclerosus & Vulval cancer UK Awareness - Home Page, n.d.).
Symptoms of Lichen Sclerosus include itching, burning, white patches, cuts, itchy anus, clitoris buried under skin, fusing of the labia minora, painful intercourse, vaginal opening shrinkage, purple/red bruising on the vulva and being repeatedly treated for thrush (Lichen Sclerosus & Vulval cancer UK Awareness - Home Page, n.d.).
Symptoms of Vulval Cancer can include a persistent itch on the vulva, pain or soreness on the vulva, raised and thickened patches of skin that can be red, white or dark, a lump or wart-like growth hon the vulva, bleeding/open sores on the vulva or blood-stained vaginal discharge between periods, burning on urination, a mole on the vulva that changes shape or colour. (Lichen Sclerosus & Vulval cancer UK Awareness - Home Page, n.d.)
The cause of most vulval cancers (of which there are seven various types) is unknown but some factors may increase your risk. Risk factors may include age, human papilloma virus (HPV) (in some vulval cancers), Cervix cell changes (CIN) or cervical cancer, a weakened immune system and having had radiotherapy treatment for womb cancer. Systemic lupus erythematosus (SLE or lupus), a chronic auto immune disease, may also increase your risk. (Rogers & Cuello, 2018)
Self-examination for any changes in your vulva is encouraged. Get familiar with your vulva’s normal appearance so that you can easily spot any changes or when something is not right. You should not feel embarrassed about speaking to a medical professional about your Vulva. Many women delay going to their doctor for various reasons including fear, embarrassment and studies suggest many are given inappropriate creams, low potency steroids or no treatment possibly fuelled by the lack of awareness of the condition (Wiggans et al., 2019).
Usually Lichen Sclerosus can be diagnosed based on visual inspection by a Gynaecologist or Dermatologist. In some cases there is a need for a small biopsy to be taken to ascertain a correct diagnosis of Lichen Sclerosus and to rule out any pre cancer changes or Vulva Cancer (Lichen Sclerosus & Vulval cancer UK Awareness - Home Page, n.d.). NICE Guidelines recommend the suspected cancer pathway referral (for an appointment within 2 weeks) for Vulvar Cancer in women with an unexplained vulval lump, ulceration or bleeding (1 Recommendations organised by site of cancer | Suspected cancer: recognition and referral | Guidance | NICE, n.d.).
Clare has set up Vulval Cancer UK Awareness because she doesn't want anyone to go through what she has and is still going through. She believes nurses and GP’s need training in all these conditions especially those that do smear tests, she also thinks we need much more research and that we need to use the word Vulva more!
For further information on treatments and details of support groups available for these conditions and associated conditions you can visit lsvcukawareness.weebly.com
(c) PCOS Vitality, 2020
References:
1 Recommendations organised by site of cancer | Suspected cancer: recognition and referral | Guidance | NICE. (n.d.). NICE. Retrieved May 10, 2020, from https://www.nice.org.uk/guidance/ng12/chapter/1-Recommendations-organised-by-site-of-cancer#gynaecological-cancers
Lichen Sclerosus & Vulval cancer UK Awareness - Home Page. (n.d.). Retrieved May 10, 2020, from https://lsvcukawareness.weebly.com/
Rogers, L. J., & Cuello, M. A. (2018). Cancer of the vulva. International Journal of Gynecology & Obstetrics, 143, 4–13. https://doi.org/10.1002/ijgo.12609
Vulval cancer statistics | Cancer Research UK. (n.d.). Retrieved May 10, 2020, from https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/vulval-cancer#heading-Three
Wiggans, A., Coleridge, S., Bryant, A., & Morrison, J. (2019). Relationship between vulvar symptoms and incidence of vulvar cancer in women referred to a rapid access clinic. International Journal of Gynecology & Obstetrics, 145(3), 283–286. https://doi.org/10.1002/ijgo.12818
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