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Recent Diagnosis

Diagnosed with Vulvar LS in August, recovering from biopsy 1 1/2 weeks ago (ugh), and now think I am getting symptoms on my upper body.  Am interested in connecting with other women with LS to get more info, helpful ideas, etc.

angelannie43 angelannie43 46-50, F 9 Responses Oct 5, 2009

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I was also not told how serious LS can be and now I am paying for it. My gynecologist did not warn me about how serious it was, and she did not tell me how to use the cream correctly. I am only 27 and have had LS for probably 6 years now. I will try all these things, it is just giving up everything I love..

Hi, I have had LS for about 6 years now and was not told at first how serious it could become. I had a recent flare-up of my symptoms where I was so inflamed around the labia and the anus so that I could barely sit down. Exercise and humidity seems to make it worse. I do use the steroid cream, but I have found that ingesting Pure Salmon Oil (not Salmon PLUS fish oils) 1000 mg. 3 times daily and taking Vitamin A capsules has helped more than anything. A doctor friend told me that salmon oil is a natural anti-inflammatory, and that is why it is so effective. Also, when I have not eaten any sugar or any soft drinks for at least a week, my symptoms disappear and I actually feel "normal". Stress seems to take a toll on my condition, though. Hope this info helps!

I'm with you on all those things. Stress, exercise, sugar, and caffeine all make my symptoms worse.

Exercise definitely. And at night!!

Hi, I was just diagnosed with LS too but knew something was wrong for 30 years but because of what I look like I was never taken seriously, they just thought I was after pain meds too get high on. Too bad it took getting cancer and the discovery of the amount of internal damage of to my organs. This is no joke, this LS stuff. I just want women to ADVOCATE (sing it like RESPECT by Aretha Franklin) for yourself and keep going till you get the diagnosis. It hasn't changed much now that it has a name. but at least the docs take me seriously now. Huh.........

I was diagnosed with LS yesterday! But have had this conditon for almost 2 years and did not know what it was. Now it has reached my upper body.<br />
I go to my GYN every year and he was treating me for yeast infections and vitilgo! 2 weeks ago i called him and told him i had researched LS and for him to check it out and i would be in to my appointment at 3pm. He told me to stay off the computer and that i had Vitilgo.<br />
I decided to go to a dermatologist a week later. He looked at me and said "Great Job on your Research". He took a biopsy and called me yesterday to confirm that i do have LS. <br />
I have been crying since, yesterday, even though i had an idea.<br />
My GYN put me on Premarin and my Dermatologist put me on Protopic.<br />
The Protopic burns and itches me like crazy and as far as the Premarin i am scared to use it because it seems as if my GYN has no clue of what is going on!<br />
I just need someone to talk to that is in the same boat i am in. <br />
My bestfriend is trying to be supportive, she tell me not to worry, but it is my life that is being destroyed. She just does not understand.<br />
I cant sleep for itching, or burning with this protopic.<br />
I work at a desk for 10 hours and i scrum all day in my seat. I cant tell my coworkers what is wrong because they want understand!<br />
Sad, and Upset!

I was diagnosed with LS yesterday! But have had this conditon for almost 2 years and did not know what it was. Now it has reached my upper body.<br />
I go to my GYN every year and he was treating me for yeast infections and vitilgo! 2 weeks ago i called him and told him i had researched LS and for him to check it out and i would be in to my appointment at 3pm. He told me to stay off the computer and that i had Vitilgo.<br />
I decided to go to a dermatologist a week later. He looked at me and said "Great Job on your Research". He took a biopsy and called me yesterday to confirm that i do have LS. <br />
I have been crying since, yesterday, even though i had an idea.<br />
My GYN put me on Premarin and my Dermatologist put me on Protopic.<br />
The Protopic burns and itches me like crazy and as far as the Premarin i am scared to use it because it seems as if my GYN has no clue of what is going on!<br />
I just need someone to talk to that is in the same boat i am in. <br />
My bestfriend is trying to be supportive, she tell me not to worry, but it is my life that is being destroyed. She just does not understand.<br />
I cant sleep for itching, or burning with this protopic.<br />
I work at a desk for 10 hours and i scrum all day in my seat. I cant tell my coworkers what is wrong because they want understand!<br />
Sad, and Upset!

I have been recently diagnosed with LLP. I had two biosies in my head. So one is alopecia and the other is llp. My hair is thinning and I do have a quaarter size empty space under the hair, thank goodness. I was devasted but we went on a vacation l0 days later and realized there are worse problems. Okay, then the next problem is I have Linchen in my mouth. Gross, Canker sores all over.<br />
I do have RA and no MD not even my primary who is great, nor my Rhumatologist, now my<br />
gynocologist says he shall handle it. Now I have it in my gential area and anus. I am seeing my skin MDwho is great but I am too frustrated because I have a yeast infection and I am self medicating.<br />
I usually look at the bright side but this is getting annoying. I know this is just another bump.

I feel awkward spamming in comments to read my story, but I found something that worked for me. My cure might be a little difficult to locate though. I need help finding the english name of this plant I'm using. <a href="http://www.experienceproject.com/stories/Have-Vulvar-Lichen-Sclerosus/1055958" target="ep_blank">EP Link</a>

me too. i have had this for 10 years. it seems no one knows how to cure it, just slow it down...it is inevitable...... has anything happened to your labia or other parts? i had the itching years ago and now things are decreasing in size....anyone know to STOP IT!?!?!?!?

Yes, I have my Labia minor atrophied to the point it is gone, and my clitoris is hooded almost all the way

I have Lichen Sclerosis, too, but haven't had symptoms anywhere else. That I know of, anyway. I'm sorry you have this. It is NOT fun!