I’m exhausted and feel defeated by LS and alone in all this !

Really feel for you. LS can certainly take over your mind and become all-consuming.

Can you not up your dermovate applications to every day? I was told by GP to use steroid everyday again whenever things got bad, slackening off when it calmed again. Also I know that if I miss oestrogen applications for a week or so I feel more irritation so religiously stick to 3 times a week. Have you tried Borax soaks to soothe things? I find it neutralises irritation and softens the skin especially when I have perhaps overdone other moisturisers - it's a good way of 're-starting' your self care.

Don't despair, I am sure you will find a regime that suits you eventually and try not to examine yourself too often as that's a sure fire way to worry yourself more and stress is not good as we all know.

Have you used the appointment called Clob? It has to be the ointment and not the cream! It has nothing to do with hygiene, clothes, toilet paper, anything, it is just bad luck! trust me when I tell you we all feel for you and we know what you are going through. I don’t know where you are but I am in the United States and my gynecologist is the only one that is able to know and take care of what is going on with this lichen sclerosus. Don’t depend upon a regular physician. You need to have your gynecologist And make sure he does a biopsy to make sure that this is really what it is. Just continue to reach out to everyone because we are here to listen to you and respond.

Sarah,

you sound like me 4 mos ago! and even to this day, there is often that "alternate brain feed" going on in my head!

1. i think some people have a combined anti fungal and steroid ointment. my derm gave me a separate tube if nystatin to use at the first hint of yeast. works for me.
2. my derm suggested i take a good probiotic for both yeast and uti...i think it helps. i said what is a "good" probiotic. she said any capsule that doesnt need to be refrigerated.
3. the other thing is that i now do tacrolimus as well as steroid. this has really stabilized everything. you might as your doc about it.
4. i think you should have a dermatologist to help with this. it is, fundamentally, a skin disease.

deeep breath!!! oh...do you take baths. even plain water bath helps!

After I developed a reaction to Clob, a gynecologist prescribed a clotrimazole/dexamethasone cream, which cleared the white patches and the irritation in 2 weeks. So, you can ask for that. It is both an antifungal and a steroid in one tube. I also found a vaginal antibiotic/antifungal treatment (the French medication Polygynax) very helpful. Currently on Protopic (Tacrolimus). For yeast or UTIs , try drinking cranberry juice, or take cranberry pills. Oregano capsules are helpful, too. Beta glucans for immune system. It is a terrible disease, but it can be managed, and some people do get cured, at least according to some Pubmed articles.

sarah, I use hormone cream nightly ( because of atrophy). Low estrogen, according to the gyn, caused my LS. Initially the hormone cream caused soreness, but using a small amount of nystatin with it solves the problem.

Before I was diagnosed with LS I was experiencing a fleeting inner vag itch. The gyn said I had LS not an infection, however, I did insist on a prescription for Flagyl because I was denied it 20 years ago when I had a raging infection that lasted 5 years (so I know about discomfort). That earlier gyn prescribed everything under the sun instead of the one medication I wanted ( it had worked for me when I was younger).

After my LS diagnosis (1 1/2 yrs ago) the Flagyl quelled the itch with the 1st pill, but a very low key occasional itch & sometimes odor remained. I tried rinsing each night with warm water & a small amount of baking soda (my idea). That along with using the small amount of nystatin ointment with the hormone cream (the gyn's suggestion) seemed to have gotten both issues under control. I rarely use the rinse now but always add the nystatin to the hormone cream.

It sounds as though your problem is anxiety which can exacerbate any issue. I would work on doing whatever is necessary to control it or you will be in a constant negative loop. Unlike you I have to remind myself to check in the mirror. I'm not happy about having LS and continue to research any possible treatments, but it is certainly not something that is always on my mind. If you don't like the effects of amytripteline then ask for another med for anxiety. But if you think calming anxiety is "masking" the LS problem I think you need to reconsider what problems the anxiety is causing.

Best of luck.