My urogyno told me in October I had LS because of change in architecture
She prescribed clobetasol and I used it twice daily for 5,weeks. I saw her again in November and she told me to use Clob once daily and zinc cream for barrier. She changed my hormone cream as well. I’m seeing her this Wednesday and not feeling very confident she never did a biopsy. I’m reading that many ladies here had one. I still have burning and pain and sometimes itchiness. My anal area burns as well. I don’t have white patches. This whole situation has me feeling very down because I can’t see myself ever improving.
Arlee you may want to get a second opinion. It wouldn’t hurt. I had a tear that wouldn’t heal for over a month so my Gynocolgist performed a biopsy. It was confirmed it was LS. I had to apply the Clobetasol twice a day for 12 weeks and then 3x a forever according to my dr. I am in the middle of a flare up due to yeast infections. I believe that is what has caused it. I know all this causes so much anxiety. Have you been checked for yeast?
Meant 3 X per week forever
My suggestion is - go sit in a baking soda bath (1/3 cup for a full bath) It had helped me a lot in the earlier stages. It somehow calms things down.
Hey. i found out I had LS in November. I also don't have white patches but still sometimes get pain and itching. I also never got a biopsy. I'm seeing my doctor again next week and I have so many questions. I've learned way more on this forum than from her.
This is just to let you know you're not alone. From what I've read many women here have shared lots of different solutions and options... so there's lots of hope! I hope you start to feel better soon.
Hi Sandra. I have tried to get an appointment with a vulvar dermatologist but she’s not taking new patients. We have Medicare where I live, so you don’t pay for health care unless the doctor is private. I even tried to see one in another city where my daughter lives - no luck. It’s really disturbing
When I see my dr on Wednesday I will ask her about yeast - I was never tested for that. Aren’t there symptoms with yeast infection?
That’s exactly what I’m good ng to do today. I have a sitz bath but I never know how much baking soda to use. Less than a bathtub I’m guessing?
Elle. What made your dr suspect you have LS? I’m still using clob once daily still have burning and pain and sometimes itchiness. It’s only quiet when I sleep! This is going on since October. On wed I’m going with a list of questions (again). This is the third time. I just can’t see an end to this misery. I do all my usual daily activities and I volunteer but it’s not in comfort that’s for sure
PS. I’ve also learned more from this his forum than my doctor. I’m also researching - probably too much on google
Hi, I have one of those portable bidets that I sit on top of the toilet. I use a tablespoon of baking powder.
URGH. id written you a huge reply and it got deleted.
My doctor suspected when I said the fissures and itching were interfering with my sex life.
She didn't really educated me about LS. And I was devastated when I did my own research at home.
Now I'm focusing on tracking my symptoms in my bullet journal and trying the stuff people have recommended. I now take vitamins and omegas 3s. I switched underwear. Trying to cut back on sugar and dairy. Haven't yet tried the baking soda soaks or vaginal dilators, but will try soon.
My biggest question is does the clob prevent fusing? Or is my architecture still changing even if the clob is managing the symptoms like itching and cuts/fissures?
I felt so alone and devastated when I found out my diagnosis. Like I was a wreck. But don't despair!! There are so many things you can try to make it more manageable! And you are not alone.
That’s what I have. U mean baking soda?!!
I’m with you Elle my doctor didn’t educate me either. Said you have a skin disease - Lichen Sclerosus here’s a prescription for clobetasol. I was a wreck like you. I’m not sure if it prevents fusing. I’ll ask this week. It’s strange for me - I’m 70 and been menopausal since I’m 50. Never had major problems before. Since this diagnosis I’m always checking myself or I’m on the computer. Not good!
Yes there are symtoms with yeast, but are very much like LS; itching burning and some women have a discharge that is like cottage cheese or clear. I have no discharge with yeast, therefore causing a misdiagnosis 3 times. I now request the Dr to do a test for yeast to make sure. Just in Nov my Gynicologist said no yeast. I saw another Gynicologist she tested and yes it was yeast. I know the yeast caused my LS flare up. Yeast also spreads if not treated. I had it spread all around my anus because it was misdiagnosed. You may not have yeast, but maybe want to make sure it isn’t present along with LS❤️❤️
PS: I don’t know where you live, but I found a Vulvar Clinic by searching on line for Vulvar Clinic or Vulva specialist in my area. I have an appointment in May to see a Gynicologist that specializes in diseases of the Vulva. It is a long time to wait, but seeing the right Dr that is going to follow up with you and note any changes in scaring is so important. God bless😇😇😇
With regard to your concern regarding a biopsy. All this means is that your doctor knows more about LS than most. Many women go through having biopsys simply because their doctor is clueless and doesnt know enough about LS ,and so they send you off for a biospy..terrible really.
A doctor that is familiar with LS can give you a visual diagnosis of LS straight away. That, and the list of symptoms that most of us have should make it a pretty straightforward diagnosis.
The Clob will clear up the white patches but its diet that needs to be changed for some women. I am gluten free which helps. You could try going GF for a month and see if it makes a difference. But really, the biggest problem i think is the amount of sugar we all eat, that causes 'off the scale' itching. I know its hard to believe that diet is responsible but it often is.
You have to do some work to figure out what is causing your ongoing itching and burning. It wont go away with just the cream.
Sorry I meant to say. Sometimes LS itching is linked to low level thrush (without obvious symptoms) so if you take an over the counter thrush tablet that sometimes stops the itching. They are called D.........N Had to write it like that as we are not supposed to recommend stuff.
Hi Guppy, you are so right about sugar. Number one, yeast loves sugar. Like you I have cut out sugar (a lot of startches as well) and eat loads and loads of plain yogurt. My local Gynocolgist seemed very knowledgeable about LS and told me she also had the disease. I ask her about sugar and she said it had nothing to do with LS, but I really disagree. Sugars alter our digestive system causing yeast infections and other disgestive problems. Because sugars are in so many products, I take a prebiotic and a probiotic and as mentioned, eat Plain Yogurt twice a day and plenty of it. Ginger tea also kills yeast. I try to drink a cup of ginger root tea every day. Antibiotics mess up our digestive system as well and once again can cause a yeast infections that play havoc on LS.
This site gives us all hope!!!! Thanks for you input
I will d finitely ask dr to test for yeast. I have no discharge but itch and burn and anus as well
I have searched everywhere on line for vulvar specialist in my city. I like in Canada. It’s ridiculous that the doctor I did find doesn’t take new patients. I s by her 2 mails. No answer. That’s not a decent person by any means.
If my dr can’t help me wed I will ask her to get me appointment with someone who can