Lichen Sclerosus~ I was terrified of the anatomy changes by Laura

I was 28 when I was diagnosed with lichen sclerosis. My son was 9 months old when I started to get symptoms. After several trips to the GP and being told it was allergic reactions and thrush I saw a new GP with an interest in women’s health. She diagnosed me immediately and started me on a steroid regime, I saw an improvement very quickly and was put on 6 monthly visits to a dermatologist.

I was terrified of the diagnosis and the google searches didn’t help that. I suffer from health anxiety and the last thing someone like me needs is a condition with a raised risk of developing cancer. It’s something for the anxiety to feed off. I found myself constantly checking myself and becoming sore as a result which then panicked me more and it became a constant cycle.

One thing that terrified me was the changes to my anatomy. Things looked and felt different, but then I would question if they had always been that way. I didn’t ever check before diagnosis and I certainly didn’t use a mirror to look at myself! I wondered if I’d always looked that way and what my “normal” actually was! I have had some fusing and I would be worried about everything disappearing,’I felt like every time I looked another part of me had gone. Soon I started to wonder about when I wanted another baby. I knew I wanted another but I thought it would no longer be an option and that made me feel awful. Intimacy had changed and the thought of having to try and conceive was scary. I hit a low point then and put a lot of pressure and blame on myself thinking I’d be responsible for us not having another child.

In the end it wasn’t as scary or impossible as I thought. I got pregnant and I was lucky that my symptoms improved massively during pregnancy. My consultant reassured me that I could continue to use my steroid cream as I needed to. However at this point I found alternatives to help me along and used almond oil quite a bit, even with the reassurance I was worried I would do damage and, naturally, google throws up some worrying results when I looked at steroid use in pregnancy. I still had the odd flare up, something I put down to the hormones but i could manage, my biggest challenge was trying to do my regular examinations with a massive bowling ball bump in the way!

Because of my diagnosis I decided to push for a c-section. I was all geared up for a battle when I went to meet my consultant but I really needn’t be! She was fantastic and said she had read up on the condition and was happy to go down either route with me supporting me the whole way. Having the c-section helped me to prepare for the birth, it took away the worries of labour for me.

After the birth of my daughter my symptoms inevitably flared up again. Because of my hormones I struggled to settle them down, and having to remember the steroid with a newborn and a young son were also a challenge! I also worried about steroid use when breastfeeding. I spoke to my consultant and pharmacist and they told me the benefits outweighed the risks. I think however that was one of the reasons my symptoms took a while to settle, i didn’t use as much as I would pre-birth.
I also developed anxiety post-natally which, oddly, was a bit of a blessing in disguise. I was referred for CBT and that helped me to address some of my health anxiety which in turn helped me with my LS.

I am currently in a period of calm with my symptoms, I know when things are flaring up, I restrict my checks to regular periods of time and I know how to manage flare ups. I also try to speak about LS a little more. I’m not so great at doing it face to face but when possible I encourage women to “know they’re normal” and know when to look for help.
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I’m also determine to make sure my daughter (and son) know about this condition as well. To continue to raise awareness with the next generation.