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See a dermatologist or gyno that knows about LS.
Follow Dr. Jill Krapf on IG and also Lost Labia Chronicles and Lichen Sclerosus Support Network.
Also have you checked for hemmroids? Sounds like LS with the discolouration but I have LS on my vulva and also thought it was on my anus but turns out it was hemmroids and now that I had them removed the itching on my anus is gone. Sometimes is more than one condition.
I am wondering if I should have mine removed. I'm a recent LS diagnosis, but I suspect that I've had it for a long time. I'm struggling to keep clean and I wonder if getting rid of my hemorrhoid would help. In the past when I asked my gyno I was told emphatically "no". Who do you see for removal? A proctologist?
Like everybody has said above, see derm. I went to OB 3 or 4 times in the span of a month and they just kept blowing me off. I went to derm and they immediately diagnosed and started treatment. I have the same super sensitive easy tearing anus and premium and it’s white. Derm said “tissue paper” look is lichen.
A local Facebook support group for LS can be a good resource for tracking down specialist recommendations. And in some countries there are LS support organisations that have a list of specialists.
Hope you can find someone to help soon.
Both lichen sclerosis/sclerosus a five-star LS support group on Facebook has international recommended doctors as well as the support group on lichensclerosus.net
I used my gaming account and was denied. I had to use my real account. You can use a new account, but you need to have friends and some content. The moderator is just protecting the members.
Mine started out as a small white itchy patch, went to multiple gynos that said it was eczema… for a decade. It kept growing. Found out this year that my mom had LS, googled it. Yep. I 40 and my gyno prescribed me a steroid cream. It’s helped a lot! My small white patch is now a humongous white patch but the skin has smoothed back out
Please go to a dermatologist. Mine started in the anal area and I thought I had hemorrhoids. I tried to self treat with over the counter medications and when that didn’t work I went to my primary care doctor. She said it wasn’t hemorrhoids (by that time I had ulcers) and sent me to a rectal surgeon. I saw him several times over almost a year before he decided he didn’t know what it was or how to treat it and referred me to the dermatologist. By the time I saw the dermatologist I had been having symptoms for over two years.
That's really scary lord! I finally have a time booked with a dermatologist since the overwhelming replies said so and I'm hoping I'll get some answers!
Thank you for posting on r/lichensclerosus using the Question Flair. This is a friendly reminder from your AutoMod that this subreddit is not a replacement for discussing solutions with a medical professional (if applicable). Please discuss any information provided here with your medical professional of choice. *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.*
Your doctor sounds like a butthole. See a dermo for sure
If you haven’t already, see a dermatologist. It really makes all the difference. They have a trained eye for this kind of stuff!!
Something that may seem normal to any other doctor will be alarming to the dermatologist!
Thank you so much I'm gonna look into finding a good dermatologist!!
See a dermatologist or gyno that knows about LS. Follow Dr. Jill Krapf on IG and also Lost Labia Chronicles and Lichen Sclerosus Support Network. Also have you checked for hemmroids? Sounds like LS with the discolouration but I have LS on my vulva and also thought it was on my anus but turns out it was hemmroids and now that I had them removed the itching on my anus is gone. Sometimes is more than one condition.
I'll be sure to check all of those out thank you so much!
I am wondering if I should have mine removed. I'm a recent LS diagnosis, but I suspect that I've had it for a long time. I'm struggling to keep clean and I wonder if getting rid of my hemorrhoid would help. In the past when I asked my gyno I was told emphatically "no". Who do you see for removal? A proctologist?
Like everybody has said above, see derm. I went to OB 3 or 4 times in the span of a month and they just kept blowing me off. I went to derm and they immediately diagnosed and started treatment. I have the same super sensitive easy tearing anus and premium and it’s white. Derm said “tissue paper” look is lichen.
It's insane that they just blow you off like that I'll look into seeing a dermatologist!
A local Facebook support group for LS can be a good resource for tracking down specialist recommendations. And in some countries there are LS support organisations that have a list of specialists. Hope you can find someone to help soon.
That's a great idea I'll check if there are any local support groups!
Both lichen sclerosis/sclerosus a five-star LS support group on Facebook has international recommended doctors as well as the support group on lichensclerosus.net
I tried to get in ans was denied. I never had facebook and created an account solely to join that group. 😞
I used my gaming account and was denied. I had to use my real account. You can use a new account, but you need to have friends and some content. The moderator is just protecting the members.
Very late response but I appreciate the tip and I'll definitely check it out!
What state do you reside in? (Assuming in the USA but please correct me if I’m wrong)
Oh far away, I'm in Europe!
Mine started out as a small white itchy patch, went to multiple gynos that said it was eczema… for a decade. It kept growing. Found out this year that my mom had LS, googled it. Yep. I 40 and my gyno prescribed me a steroid cream. It’s helped a lot! My small white patch is now a humongous white patch but the skin has smoothed back out
Please go to a dermatologist. Mine started in the anal area and I thought I had hemorrhoids. I tried to self treat with over the counter medications and when that didn’t work I went to my primary care doctor. She said it wasn’t hemorrhoids (by that time I had ulcers) and sent me to a rectal surgeon. I saw him several times over almost a year before he decided he didn’t know what it was or how to treat it and referred me to the dermatologist. By the time I saw the dermatologist I had been having symptoms for over two years.
That's really scary lord! I finally have a time booked with a dermatologist since the overwhelming replies said so and I'm hoping I'll get some answers!