I need some advice please.

Hi Rose, from what you have said it does sound  like Lichen Sclerosus, and so you will need to  find a Vulva Clinic, where doctors are used to seeing and treating Lichen Sclerosus.   Unfortunately too many doctors that don't understand this condition still feel it is okay to give advice when it is often not the right advice, it is a problem. 

Uncomfortable and sometimes painful sex, culminating in splits in the vagina are classic LS, and so as I said, it is important you find someone as soon as you can.

There is no need to be worried about cancer, it is incredibly rare, but you will need to have a checkup, at the very least yearly, to make sure everything looks fine.  If you go to the newbies thread at the top of the page you will find a link in there to a Webinar by Dr Goldstein who is knowledgeable with regard to LS.  It lasts an hour, and you will need pen and paper to make notes.  Also if you read a lot of the other posts on this site you will see that this condition is manageable with the correct treatment. 

  

Hi im in the same boat as you and 2 of my docs dont agree.i really am leaning towards mine being ls.Does it caus you any urinary symptoms,burning etc?no its not supposed to turn into cancer

I think you need to go back and get answer to questions. Even if you make a list you need to walk out knowing what the next step is. It could be anything, everything or nothing that a simple procedure will fix. Good luck

Hi Rosedee, I started with itching in my anus area. I noticed a change of colour in my vulvar area while cleaning myself up for an exam and thought it was vitiligo. I did experience some mild itching in the vaginal area. My GP thought it was lichen planus and she referred me to a gyne that I see for another condition. The gyne I went to said that by looking at it he was confident it was LS but it wasn't his specialty. He then referred me on to a vulvar clinic. He told me that if he couldn't get me in there he would send me to a dermatologist. Sometimes when they can't make a positive diagnosis by sight alone they will do a punch biopsy - which is frightening to think about. (The procedure is described on the mayo clinic website.) The first gyne told me to purchase corticosteroid cream from the pharmacy and apply that daily to the entire area until I got in to see my LS gyne. If you suspect that you may have LS you could try this while you wait to see a specialist. While LS is precancerous I believe that it is rare it will turn to that if you are being treated. Personally, if your symptoms are minor, I would wait to go to the female hospital but my 1st gyne said this is a skin disorder and a dermatologist has the training and qualifications to treat it.

Hi Rosedee, I started with itching in my anus area. I noticed a change of colour in my vulvar area while cleaning myself up for an exam and thought it was vitiligo. I did experience some mild itching in the vaginal area. My GP thought it was lichen planus and she referred me to a gyne that I see for another condition. The gyne I went to said that by looking at it he was confident it was LS but it wasn't his specialty. He then referred me on to a vulvar clinic. He told me that if he couldn't get me in there he would send me to a dermatologist. Sometimes when they can't make a positive diagnosis by sight alone they will do a punch biopsy - which is frightening to think about. (The procedure is described on the mayo clinic website.) The first gyne told me to purchase corticosteroid cream from the pharmacy and apply that daily to the entire area until I got in to see my LS gyne. If you suspect that you may have LS you could try this while you wait to see a specialist. While LS is precancerous I believe that it is rare it will turn to that if you are being treated. Personally, if your symptoms are minor, I would wait to go to the female hospital but my 1st gyne said this is a skin disorder and a dermatologist has the training and qualifications to treat it.

Hi Rosedee,

It sounds very much like LS to me.  Narrowing of the vagina sounds familiar. I would encourage you to find a doctor that can truly help you with a correct diagnoses.  

Meanwhile - I suggest to try baking soda baths (1/3 cup) and baking soda rinses after bathroom visits (three pinches in a Perin bottle) and for moisturizing coconut oil.  

Perhaps start gentle dilation, to keep the area open.   I have found it to be very beneficial.

You probably already read about diet: no sugar is high on the list, no alcohol, probably limited dairy.  (my LS gets triggered by eating cheese for instance)  You might feel better with a gluten free diet. Perhaps good to start trying some things.  

Good insight from Dr. Goldstein on this website as well.  It makes that you become familiar with LS.  The more you know the better you will do, also at doctor's visits.  

Wishing you well.