Misdiagnosed with LS for over 3 years
Posted , 2 users are following.
I 've always looked at this forum so I thought I would share my story as I recently found out its highly likely that I don’t have LS after many years of thinking I do.
I was first diagnosed with LS after I presented with tears on my vulva, mostly after sex, by my GP. She said she was certain that’s what it was, gave me steroid cream and instructions for use and sent me on my way. She noted I was young to be diagnosed (26 at the time) but that research into women’s health was poor. I was devastated. I used the cream after sex predominantly and around my period when I would get tender.
A year later for my review appointment I was seen by another GP who was very rushed during the appointment. She took one look at me and said are you sure you don’t just have thrush? I was gobsmacked! How would I know how to diagnose my own gynae problems? So I said I didn’t think so but couldn’t be sure - she said she was sure it’s fine and let’s just see you in a year. (Why didn’t I press forward about her uncertainty I don’t know, probably embarrassment and guilt for taking up time in the NHS)
A year later I was seen by a third GP who looked at me and said she just wasn’t 100% sure and felt like LS was out of her specialism. She referred me to a consultant gynae doctor at the hospital so that I could be given the most up to date advice.
Fast forward to the consultant appointment and basically she thinks it’s not LS. The skin presentation doesn’t match up and I don’t have all of the classic symptoms (though some of my symptoms like tears and tenderness crossover with LS). She categorically said you should not diagnose LS without a biopsy (which should have been done at the first GP appointment) but clinically she doesn’t have the justification to biopsy me as I don’t match LS. She thinks it’s potentially some form of eczema or dermatitis that means the skin on the vulva is easily irritated. Which is also why the steroids made things a little better.
I’m genuinely so surprised but relived to have a clinician who feels confident in their examination and looks at vulvas all day! I just wanted to share this because I really think it’s so important to get a referral and a proper diagnosis. GPs are great but LS, and really any female health issues, are so under researched and an expert opinion is really essential. I felt guilty and didn’t question the other GPs but I wish I had asked for a referral sooner. Now I take my focus off LS and onto dermatitis. I hope this helps - female gynae problems are incredibly hard and although I’m not sure dermatitis is a great diagnosis, I’m happy to just feel confident that my clinician has a plan.
0 likes, 5 replies
Tizio claire30173
Posted
Hello
I am a 27 year old boy, I have only a slight dryness of the glans and at the beginning of the year I went to a dermatologist who on the basis of the dryness alone told me that I had lichen sclerosus. I literally panicked, he gave me an anti-everything cream, cortisone + antifungal + antibacterial that the only thing he did (this in March 2021) was literally burn my penis, making it even more dramatic and leading me to believe I have LS . After him I saw 8 other doctors, two urologists, three other dermatologists, my treating doctor, a doctor friend of the family, a gynecologist who also made peniscopies to men (I did two) and all of them excluded me from lichen sclerosus , saying that my dryness was related to trauma (basically masturbation and intercourse) and that it was terribly worse due to the cortisone cream. All the other doctors, for the most part, told me NOT TO APPLY ANY CREAM, while two to put only emollient creams, but definitely NEVER A CORTISONE CREAM. I still do not sleep well at night, for fear of the diagnosis of lichen, but I have noticed that my glans, even without emollient creams, is able to rehydrate a little. It dries up only after washing, but I don't know if it's because the skin is now sensitive (before cortisone I didn't have problems in contact with hot water or detergents) I also had an improvement with a detergent suitable for dermatitis, maybe mine is just a very slight form of eczema which, in addition to not being seen (because the doctors say it has absolutely nothing), does not create particular problems. Like you, I have never had typical lichen symptoms, such as white spots, itching, burning or pain. I have not even had cuts, never ever, just a simple dryness, which can also be a cutaneous xerosis, a totally harmless stuff. I hope I'm really healthy and I wish you too!
claire30173 Tizio
Posted
Tizio - thats very interesting! Im glad you hopefully now have the proper diagnosis. My consultant also mentioned to try and not use the steriod cream (but bc of years of use i may need to wean myself off). She also suggested heavy moisturiser use and also recommended a prescription one. I hope we are both on the course to sorting our syptoms!
Tizio claire30173
Posted
I will be to another doctor tomorrow, just to have another opinion, cause my penis seems to be always dry or less dry but sticky, and I would understand my problem. You think to take a biopsy too? I would, but I'm not sure, would see if a doctor suggest it to me, because doctors said that are useless, I'm confused.
anneebee claire30173
Posted
Both of these posters that were misdiagnosed did not have biopsies. Demand them.
Tizio anneebee
Posted
You suggest to take a biopsy anyway?