Lichen Sclerosis question

I was diagnosed with Lichen Sclerosis 10 years ago, by biopsy under a GA. No treatment was given as no-one knew how to deal with it.Prior to diagnosis the GP had never looked but treated it as Thrush with Canestan cream (this makes it worse by the way). When I moved to another county I was referred to a Vulva Clinic at a nearby Hospital where I was re-diagnosed with Erosive Lichen Planus and started on treatments whilst being checked regularly for signs of cancer. Because of lack of treatment and being wrongly treated for Thrush for years, the condition had worsened and tears in the vulva and patches of white areas appeared. 2019 I went for a normal check up at the Vulval Clinic and straight away had patches removed under local anaesthetic and sent for culture. The Doctor did not like the look of the area, took margins also which was just as well as hopefully that area is clear now. However, nothing cures either condition, all anyone can do is find something that eases the symptoms. At the dedicated Vulval Clinic you are seen by a Gynae and Dermatology Consultant, as they find out more about the condition. Most GP's have never heard of it so I would advise you to ask if you can be referred to a Vulval Clinic that deals with these specific conditions. PLEASE STOP USING THRUSH TREATMENTS the Consultants at the Clinic are very clear there has been too many misdiagnosed women and this condition has to become more known among GP's and practice nurses. I hope this is helpful.

Thank you for your reply songthrush.  

I agree that there is so little known about lichen sclerosis, lichen planus or vulva cancer by many health professionals. My mum had been complaining about her skin for years but it always felt as if she was fobbed off. She was transferred to dermatogy but they never seemed to have any idea either. She had to fight for everything as she knew something wasnt right and the steroid cream did nothing. She even took herself to a&e telling them she would not leave until they could tell her what was wrong with her. 

In the end by the time my mum was transferred to a vulva specialist she was diagnosed as having cancer.. unfortunately although she had operations and chemo /radiotherapy the cancer was too aggressive and she only had a few months to live. 

This is what makes me so panicked. I have tried to look into whether there are any genetic factors that can contribute to these skin conditions but I cannot find a conclusive answer.. however I have had these recurring cuts for a while and am sure if it was thrush that it would have gone by now. 

I will return to my doctor and ask them to refer me. 

Has anyone heard of any genetic links to these conditions? 

Thank you

So sorry about your mum

While I haven't had this issue, I have had Lichen Sclerosis & vulva cancer 

I would insist on being refered to a gynecologist especially with your family history 

Best Wishes 

Hi,

I would tell your doctor because of your mum and your symptoms you want to be referred to a vulval specialist to get a diagnosis . My vulva cancer started from years of being misdiagnosed of lichen sclerosus because GPs all told me it was thrush.

Clare