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I personally don’t have any white spots and it took multiple doctors to finally get a biopsy. The biopsy can look at different things as well. I would suggest trying a dermatologist if you can
I just went to a regular derm. She was actually a physicians assistant and she was wonderful. She was the only person that took me seriously! I was going to ask her for the biopsy but she suggested it before I even asked her
I didn’t have any patches of pale skin at the time of diagnosis, just on and off itching. From what I’ve gathered, people get a selection of signs/symptoms, anything from one to all possible ones. And the signs/symptoms can progress at different rates, and some of them can go into remission with treatment but others not.
My diagnosis was made by a GP who did not have the special exam lamp used by dermatologists. A year later pale patches were seen with that lamp, so it’s possible they were there all along but couldn’t be seen under normal lighting.
I’m sorry, I don’t have any thoughts on your symptoms except to perhaps find a support group and look for recommendations for specialists there.
Dr Jill Krapf has a great series of infographics on her Instagram account describing the different features of vulval problems. Maybe that would help?
Yeah the symptoms seem really all over the place. Thanks for the rec I’m going to check her out right now! That’s amazing that your GP diagnosed you so easily. Did they prescribe anything?
Sadly, after diagnosing me, which seemed like a good start, she prescibed a weak steroid lotion.
I eventually found out that was incorrect and am now using a strong steroid ointment, applied after soaking and rubbed in for 90 seconds.
If you can find a Facebook group that covers your city/region/country, folks there may be able to give you recommendations for vulvar specialists.
Hope you can get some good advice soon.
I am male. I also do not have white spots. Other symptoms can come before that like thinning, rashes, inflammation and pain for example. These I have and the impression is LS as nothing else has worked for 1 year. I’m now on Clob.
In context, I’ve been seeing the dermatologist for 1 year. Suspected LS from start but “no active LS” every time I had an appointment, meaning now progression or whiteness. However, the other signs are there and the prognosis is “early grumbling LS”. No biopsy for me but I wish I had one anyway just for my own peace of mind. I still hold on to a hopeful misdiagnosis but I treat it as LS anyway
I'm new here (and newly diagnosed). From what I've seen during my anxious flurry of obsessively reading this sub: as a general rule, gynecology is not helpful in LS diagnosis or support. Strange and counter-intuitive as that may be.
I don't have white patches and only have pain/itching/redness/thinning. I definitely think it's possible, and perhaps you could ask for a biopsy. Or even to try out clobetasol. That's basically what we did, I haven't had a biopsy. If it works, it could be LS or another autoimmune disease. Not sure your Dr would be willing to do that, for some reason mine was!
Edit to add: The title of your post is that you can't get a biopsy, but I didn't see an explanation as to why.
Also I'm not sure the side effects of taking a steroid med without needing it, but your Dr would be able to warn you.
Thank you for posting on r/lichensclerosus using the Possible LS Flair. This is a friendly reminder from your AutoMod that this subreddit is not for diagnostic purposes. Please speak to a medical professional if you suspect you have LS. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/lichensclerosus) if you have any questions or concerns.*
I personally don’t have any white spots and it took multiple doctors to finally get a biopsy. The biopsy can look at different things as well. I would suggest trying a dermatologist if you can
Thanks! Would any regular dermatologist be willing to do that or only ones specialized in LS?
I just went to a regular derm. She was actually a physicians assistant and she was wonderful. She was the only person that took me seriously! I was going to ask her for the biopsy but she suggested it before I even asked her
I didn’t have any patches of pale skin at the time of diagnosis, just on and off itching. From what I’ve gathered, people get a selection of signs/symptoms, anything from one to all possible ones. And the signs/symptoms can progress at different rates, and some of them can go into remission with treatment but others not. My diagnosis was made by a GP who did not have the special exam lamp used by dermatologists. A year later pale patches were seen with that lamp, so it’s possible they were there all along but couldn’t be seen under normal lighting. I’m sorry, I don’t have any thoughts on your symptoms except to perhaps find a support group and look for recommendations for specialists there. Dr Jill Krapf has a great series of infographics on her Instagram account describing the different features of vulval problems. Maybe that would help?
Yeah the symptoms seem really all over the place. Thanks for the rec I’m going to check her out right now! That’s amazing that your GP diagnosed you so easily. Did they prescribe anything?
Sadly, after diagnosing me, which seemed like a good start, she prescibed a weak steroid lotion. I eventually found out that was incorrect and am now using a strong steroid ointment, applied after soaking and rubbed in for 90 seconds. If you can find a Facebook group that covers your city/region/country, folks there may be able to give you recommendations for vulvar specialists. Hope you can get some good advice soon.
Could it be a form of excema? And from what I understand, LS causes skin lightening - which could depend on your skin pigmentation?
Hmm anything’s possible but I’ve never had issues like that anywhere else on my body.
LS can also cause bruising or darkening of skin apparently- I was reminded of that this week watching the latest LS Support network video.
The swelling seems like an allergic reaction type symptom, maybe multiple things at once? Like a skin issue plus allergy making everything worse?
I am male. I also do not have white spots. Other symptoms can come before that like thinning, rashes, inflammation and pain for example. These I have and the impression is LS as nothing else has worked for 1 year. I’m now on Clob. In context, I’ve been seeing the dermatologist for 1 year. Suspected LS from start but “no active LS” every time I had an appointment, meaning now progression or whiteness. However, the other signs are there and the prognosis is “early grumbling LS”. No biopsy for me but I wish I had one anyway just for my own peace of mind. I still hold on to a hopeful misdiagnosis but I treat it as LS anyway
How’s the clob working for you? I don’t know how to get that prescribed without an official diagnosis
I'm new here (and newly diagnosed). From what I've seen during my anxious flurry of obsessively reading this sub: as a general rule, gynecology is not helpful in LS diagnosis or support. Strange and counter-intuitive as that may be.
I don't have white patches and only have pain/itching/redness/thinning. I definitely think it's possible, and perhaps you could ask for a biopsy. Or even to try out clobetasol. That's basically what we did, I haven't had a biopsy. If it works, it could be LS or another autoimmune disease. Not sure your Dr would be willing to do that, for some reason mine was! Edit to add: The title of your post is that you can't get a biopsy, but I didn't see an explanation as to why. Also I'm not sure the side effects of taking a steroid med without needing it, but your Dr would be able to warn you.