talkhealth meets…Clare, lichen sclerosus survivor and advocate

Did you miss out IG Live with Clare? Watch it back here.

Clare Baumhauer was diagnosed with vulval cancer at the same time as lichen sclerosus. Although less than 5% of women with LS go on to develop cancer, it’s nonetheless a risk. She's now an LS and vulval cancer campaigner who runs a support group and an Instagram page packed with useful information.

When were you diagnosed with LS?

I was diagnosed with LS at 43 which was in 2016.

How long did it take you to reach that diagnosis?

It took about 38 years to receive an accurate diagnosis, by which time I had developed vulval cancer. I’ve had four surgeries and two rounds of radiotherapy. It took 16 months before I was given the all-clear and I’ve been in remission for three years.

When did you first experience symptoms and what were they?

I was around four or five when I started to experience itching at night and burning pain when I went to pee. I was also super fidgety when sitting down. 

How has LS impacted your life?

The stress of having LS without knowing what it was has had the most impact on my life. The symptoms have come and gone over the years, so it was only really during a flare-up that I found myself unable to go about my usual activities; I couldn’t wear jeans or leave the house. I couldn’t have sex as it would make me feel sore and each flare took about two weeks to get over. I used to make excuses up so that I didn’t have to have sex often and that was hard to discuss with my husband as, before my diagnosis, I had no idea what was making me feel that way.

You’re a campaigner now but have you ever struggled to talk about having LS?

I think it has been easier for me to talk about LS as I was diagnosed with cancer at the same time and I was so angry at the misdiagnosis and lack of awareness that I was desperate to talk about it. I’m not sure I would have been so public about LS otherwise - probably only telling my family and close friends.

Are there any specific phrases you recommend people using when seeing their GP to get them to take the situation seriously?

Make sure that you say vulva and which is the area that you have symptoms in - it’s really important that you get that accurate. I said vagina which probably played a role in being misdiagnosed with thrush.

Explain what has changed and how it makes you feel and how it impacts your daily life.

How has LS impacted on your mental health?

The stress of not getting a diagnosis for many years did impact a lot on my mental health as you’re lead to believe that it’s all in your head. Once I was diagnosed, I was so angry. Now it’s hard to not always think that LS is going to turn to cancer again so it takes over my thoughts, especially at night. 

Have you received any professional mental health help?

No, I’ve never been offered any.

What advice do you have for other women living with LS and who might be struggling to open up about the condition?

It really helps to talk about LS. Try to make your family and friends understand how it impacts your life so you feel less alone. You may also find that a family member or friend also has LS or has the symptoms but didn’t know. 

What’s the single most useful or effective tool you’ve discovered for coping with LS from a mental health perspective?

Find others that have the same condition as you. Talking about how it makes you feel and realising that you’re not alone is so important. Also, it’s important to get helpful advice and tips as many GPs don’t know enough about LS so finding online support groups or meetings can make all the difference. Many who are diagnosed with LS aren’t told about the cancer risk or what to look out for - they find that crucial information out from support groups.

Clare is going to be our guest on an Instagram Live all about LS and mental health on Thursday 24 September, 7.30pm. Do join us!

Information contained in this Articles page has been written by talkhealth based on available medical evidence. The content however should never be considered a substitute for medical advice. You should always seek medical advice before changing your treatment routine. talkhealth does not endorse any specific products, brands or treatments.

Information written by the talkhealth team

Last revised: 8 September 2020
Next review: 8 September 2023