No diagnosis! 😔

Clair,

  Yes, unfortunately we must always use the cream.  It has on the package or instructions that its twice a day for 4 weeks then down to twice a week or something in that nature.  If you stop then it comes back within an unknown amount of time because of things that trigger it.  It sounds bad, but to me it's just dry skin in the wrong area you know.  There is no cure yet or cause.. There are many beliefs on the causes but because of the wide variety of reasons it's difficult still for the docs to know which or what... Hormones, hereditary traits, stress, ect... all go into play.  So don't be scared just be prepared for the itching and skin color changes in between times not using the cream if it starts back up. 

Also try to stay away from soaps there except like baby wash or maybe aveeno.  Don't want to wash too much either cause that may bring it on too from the water drying your skin.  Also when having intercourse be mindful of products using too cause they may irritaate too.  Hope this helps.

It's hard to say because LS does improve with steroid creams. I have had LS foir 14 years now. Neither of my GPs recognized the disease and treated me for all kinds of things like vaginitis, thrush, etc etc. It was not until I got a patch of it on my abdomen, had a dermatologist do a biopsy that I found out what I had down below. I was terrified. I had no idea what it was nor what it was going to do to my body. Not everyone has LS progress to the entire body like me, thankfully. However, I have managed to keep it under control in the vaginal area with Clobesterol cream. The extragenital are is my biggest problem. It flares every year and I break out in a terrible red rash and itching that I cannot describel

I don't think they do biopsies in the vaginal area, but maybe they do. Be fearful of biopsies, they cause the LS to progress. And then there's the issue of scar tissue from surgery of any kind.

I am not a doctor, but if I found that I was getting relief from the cream, I would use it until the itching goes. Or as soon as it flares again...go back and let the Gyn see it. Please take care.

Hi Clair

So sorry you've had to join us, but browse this topic in this forum and there's a wealth of advice on treatment and things you can do to minimise the discomfort yourself.

First of all liik for Dr Goldstein's webinar. It's been pinned to one of the discussions (I'm very low sill computer wise, maybe someone can help Clair find it?). Most of us have found it's given us more Ls info then we've got from our own health professionals.

Secondly look for a Vulvar Dermatologist. There's one in Bristol and one in London somewhere I'm remembering from previous discussions. I don't know where in the country you are, but you could try a google search. Gynaes don't do skin, and Derms don't do anything under undies, so you fall between to expertises with LS, but there are a few about. Push your doctor for a referral to one, it really is important to get the treatment right. My GP tried to treat me using the clinical guidelines and I had to insist to get to see a specialist. The first thing she said was that for LS the clinical guidelines are wrong. Do keep using the cream (ask for ointment it's better for LS than cream)

Many people find relief by using a very dilute bicarbonate of soda spray (3 pinches to a 100ml bottle) after a toilet visit to neutralise the acid of urine, followed by a moisturiser such as coconut oil, 99-100% aloe vera, or Emu oil. Stay away from perfumed soaps, use aqueous cream or Epaderm to wash with. Follow the chats here and experiment to find what suits you, we are all different. Some people have had good results with diet, others not. It varies from person to person.

You won't find a cure on this website but you will find an active, supportive community, and lots of ideas.

Make yourself a cuppa, and have a good browse. Pretty much any question you can think of will have been asked here, but if you can't find it, someone will offer advice for any question you want to post.

Good luck

Bridge

Hi Clair! Listen to this ladies change to a vulvar specialist, getting a biopsy, by that specialist of course, is a god idea because they made need to rule out other things that could look like LS, I think is really good that you have been early diagnosed most get diagnosed with fusing, thick or with peeling skin like my case.. If you do have LS and stop using the ointment ( like they say ointment is better) the disease could avance very rapidly.. Also the coconut oil did wonders for me because eventually the dry skin could start to tear which happened to me. Once the diagnose is confirmed diet is crucial, my specialist told me to go gluten free for life, you can do some research on how many can control chronic inflamatory diseases with diet, because once you have an issue in your gut over the years it becomes a systemic inflamation and you begin to experience autoimmune disorders and other diseases, I could eat anything without experiencing trouble then I got checked by a molecular specialist and it turned out a had an intoxicated liver, like gut in general and a systemic inflamation and candida overgrowth, he told me that was the root of everything so know we are doing a kidney and colon cleanse, probiotics, I have already change to low oxalate, free gluten and no sugar diet.. All of this things are just me, you need to start trying what works best for you every person is different but an agressive approach to what could be an agressive disease seems like a good idea to me.. Finally dont freak out!!! I lived finding pelvic examinations horrible because they splitted my skin for like three years but without flare ups white skin nothing it was just red, then I had a biopsy was told it was LSE and in two months after seeing pictures like crazy and freaking out my skin started getting purple and peeling off hahah I was amazed by the power of the mind, ladie you are early diagnosed trust me which is amazing so by the propper treatment things could be kept under control and from my point of view diet could do that for you too.

Sorry for my spelling mistakes dont speak english very well, take care god bless you!