New Lichen Sclerosus diagnosis and scared after family history

Hi

I'm sorry to read that you've recently been diagnosed with lichen sclerosus (LS) and it's natural that your diagnosis has raised lots of questions.

I'm not a member of this group, and don't have the experiences you're looking for, but I noticed that your post hadn't had any response yet. If you haven't already tried it, you could type 'lichen sclerosus' into the search bar in the group to find previous posts which mention this condition.

I've found this information from Macmillan for you on the treatment of LS and it looks like your GP is prescribing exactly what is suggested. This information talks about the causes of LS and it does say that one possibility is for it to be caused by an inherited altered gene.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I hope that the steroid cream that your GP has prescribed does the trick.

x

Dear Latchbrook,

Thank you so much for taking the time to respond to me and for sharing the information on LS- I will have a look through this.

It certainly feels like a very strange time. I am partly relieved that I am not going mad and that there was something 'wrong' - I had wondered if my mum's experience had made me imagine things. However, I never expected to get this diagnosis and feel in complete shock- especially when the doctor was so certain about it.

It has been hard not to think of the worst case scenario given my only knowledge of someone who had this condition was my mum. I hope that by speaking with more people who have the condition it will put my mind at ease slightly. 

Hopefully the steroid cream will help control the symptoms and make it more manageable. 

Best wishes,

It's natural to think about the worse-case scenario, I know I did, but try to focus on the fact that LS is not cancer and only a small number of women who have LS may develop vulval cancer.

x

Hi scared daughter, 

 If I was you I would ask for a refer to a gynaecologist who is specialist In vulva conditions. I’ve also attached another source where you can get information. 
Hope you get some answers I’ve been diagnosed with VIN recently.  it’s such a worry just had surgery now on Aldara which is a immunotherapy treatment. 
Hope this helps and good luck xx

Jane 45

Hello ScaredDaughter,

I was diagnosed with LS around 12 years ago, and kept on top of it with various prescription creams/anointments (similar to that you describe). Unfortunately cannot check if was hereditary as my Mum died of a brain tumour nearly years ago (my Dad knows my condition but hasn't said anything); I have however given my daughters as much information as I can (they are adults though unlike yours).

I had a number of 'scares' where it felt different and my GP referred me on to Gynae where I had 3 biopsies over the years.  In Dec 2019 I noticed a difference again, much itching,  and this time had to push for a referral - so glad I did as had become VIN, which then became Stage 1 cancer. The diagnosis came post Covid-19 -  my operations happened during and post lockdown (which was unexpected) and have now been given the all clear.

I do still have LS though, and am on a regular (as can be during Covid-19) review plan; plus am dealing with the physical and emotional after effects.

PLEASE do ensure you find a gynae who specialises in LS/VIN and ensure are referred anytime you feel things aren't right!  My gynae advised all cotton underwear,  never tight jeans, she abhorred Jacuzzis, and to use aqueous cream for washing/moisturising.

Thank you Jane for sharing the website