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Blog: Clare’s story on Lichen Sclerosus and vulval cancer – Awareness saves lives

19 Sept 2023

To mark Gynaecological Cancer Awareness Month, Clare has shared her health journey of being diagnosed with Lichen Sclerosus (LS) and vulval cancer. Since early childhood, Clare has experienced symptoms of Lichen Sclerosus, but it took years before she received a diagnosis. When she was finally diagnosed with LS, she was also diagnosed with vulval cancer at the same time.

In April 2016, I was diagnosed with Lichen Sclerosus and vulval cancer. Six weeks later I had a wide local excision to remove the area affected by the cancer, and had a sentinel node biopsy, but the surgeons couldn’t get clear margins as the cancer was too close to my anal area. This mean that I had to have 25 sessions of pelvic radiotherapy.

Although my lymph node biopsy came back clear, six months later in December, a scan showed that I still had a large lymph node. My clinical team decided to operate.  They removed six nodes, three of which came back cancerous and progressed into stage three cancer. I then had to have another 33 sessions of radiotherapy on all the remaining nodes, on both my groin and the abdomen. My clinical oncologist was reassuring and walked me through the treatment.  After treatment, saying my skin appeared similar to sunburn was an understatement, it was more comparable to third-degree burns.

My treatment was difficult and debilitating to go through. It took 14 months to complete, and both sitting and walking were painful. During the treatment process, I had four surgeries, repeated infections, and radiotherapy twice. Because of the treatment’s impact, I experienced surgically induced menopause and had various complications, such as nerve pain, scar tissue, fatigue, bowel problems, and experienced a swelling called lymphedema due to a build-up of lymph fluid in my left leg, pelvis and abdomen.

Before my diagnosis, I experienced a range of vulval symptoms over the years, mostly itching, blood blisters, white /silvery skin, sores, and burning. I had a tear in my perineum that wouldn’t heal, and after a couple of years, it turned into an ulcer.

After getting over the shock of my diagnosis, I became angry that I hadn’t heard of these conditions before, and realised that I must have had LS since I was a child. When I was around five years old, I was told l had cystitis because I was complaining of itching and experiencing a burning sensation when I went to the toilet.

As I got older, I was diagnosed with thrush multiple times and the tear in my perineum area which turned into an ulcer led to me being misdiagnosed with herpes. The consequences of being misdiagnosed and all the side effects from treatment have been life-changing. The impact is just not physical but also mental and emotional.

Unfortunately, this May, my remission came to an end as a biopsy showed dVIN (differentiated vulval intraepithelial neoplasia), pre-cancer, on my right side perineum. I had surgery to remove the area, but during the surgery, my consultant told me cancer cells were found.

He managed to get clear margins with the cancer and clear MRI scans but wasn’t able to get clear margins with the Vulval Intraepithelial Neoplasia (dVIN), as it was encroaching into the vagina. The wound was not stitched but left to heal by secondary intention which has been difficult, as it takes a long time to heal. I also developed a skin infection called cellulitis. All this has made the lymphedema worse, so I’m currently getting fitted for more compressions and being seen regularly to help manage these symptoms. 

It all makes you feel like a ticking time bomb. I have had five surgeries so far and I don’t expect the recent one will be my last. Having two conditions that are not talked about or even heard of makes the prognosis much harder and is the reason why I started to raise awareness. Along with another LS sufferer, I have started a website that has support groups called Lichen Sclerosus and Vulval Cancer UK Awareness.I wish I had known before my diagnosis the importance of checking your vulva regularly and knowing what is normal.

I hope one day that vulval cancer will be easier to talk about. 

After all, awareness saves lives.


About Lichen Sclerosus and vulval cancer

Lichen Sclerosus, is a skin condition characterised by white/discoloured, itchy patches on the body's genitalia or other areas. Although there is no cure, treatments can lessen the symptoms.

Vulval cancer, (also called vulvar cancer) is a form of cancer that affects any part of the women’s vulva, including the clitoris, labia minora, and labia major (the lips), and the Bartholin's glands.

Each year, around than 1,300 women in the UK are diagnosed with vulval cancer. Anyone who has a vulva is at risk, including women, transgender men and people assigned female at birth.

Find out more and access support

  • Clinical and research
  • Gynaecology