Confused

Scary, that is why I would like to speak to an expert in the field.   Looking for a Vulva Client in my area, hoping they will be able to guide me.  My doctor prescribed Protopic first.  Told me it could cause thinning skin so I need to take time off from using it and to use  vitamin E which thickens the skin.   He said LS could cause cancer which is very low risk and he has not seen it in 10 years.   He did not advise me about the risk of Protopic.   What do you use? Is there a risk with the medication you use?  Thanks for your reply

I use clobetasol, estrogen oil, progesterone cream and just started using a vaginal moisturizer that is OTC. So far the moisturizer is helping with the burning but still too soon to report

No reason that I know, just what the doctor prescribed.  Never tried Clobasterol and he never mentioned it. I live in Canada.  I used protopic for 3 weeks and then off for a few weeks then 2 weeks and then off.....it worked fine. He told me I could lead a normal life but didnt say it would come back but it did.  Yesterday  He told me to figure out what works for my body.   I have little symptoms now as I have been using it for 4 nights....will continue for 3 or 4 more nights to make sure it is under control.  Then I will start one night on, one night off and so on to gradually see how long it takes for it to come back.   Hopefully I will come to be like you and use it once or twice per week.  It was just that I feel I am on my own with this. The doctor was not too helpful.  Have you ever heard of "streaks"? He said I do not have anymore but streaks.   Going to take some photos so I can see for myself if it is improving or not.   Trying to find a Vulva clinic close to me but so far no luck.  I would like to be able to talk to an expert in this field. 

How often do use baking soda and what proportions?  Same for borax?  I have been using Vitamin E cream and oil to moisturize and it seems to be working just fine.   Just started the baking soda yesterday but not sure if I am doing it right.Thank you so much Samantha for sending a reply.   Appreciate it.

I think your starting off the right way with a day on/off plan which is what I did.

there is a thread on here called an experiment with borax. You will get many ideas on quantities etc for different potential lotions/potions to help the symptoms. 

Personally I change my protocol between borax and baking soda. Use the Protropic 1/2x a week and try and limit the sugar in my diet. I haven't had a flare for a few months now. 

Many have stopped using the different creams, I'm not confident to stop all together.

I do take phtotos and highly recommend to do so now as you start and every couple of days to track your progress. I must have 60-70 in a photo vault on my phone. 

I'm in UK so can't advise on vulva clinics I'm afraid. 

I do sometimes use emu oil or vitamin e, I seem to have lots of different potions and try and vary as LS likes variety.

I think over a couple of weeks hopefully you will be able to come up with a system which works for you.

You will not find many in here who use protropic- but of the people I have read who do, I haven't yet read anything negative on these boards.

Hopemyou have some relief soon x

Thanks Samatha for your help.   Have you heard that Protopic makes you susceptible to cancer because it  supresses the immune system?  Since you on this drug too....just wondering.   Thanks for all your help and it is good to know that someone thinks my plan for one day on and one day off is a good one and that you used this method too.  Makes me feel a bit better.  Have a good day!

Hi, my understanding when I did my research was that protropic and skin cancer comes up more if you are applying the protropic in areas which are exposed to the Sun. I guess it really is deciding what is for you as you have protropic which is an immunosuppressant v Dermovate (clobesatal) which is a steroid and also can potentially affect you internally after long term use.

My understanding is that if I use a pea sized amount 1-2x a week this is not considered excessive and should be relatively safe. My dermatologist was keen on protropic. My understanding is also that Dermovate is significantly cheaper than protropic and therefore prescribed more often. 

For me I started on Dermovate for a year or two but found that it activated my HPV which is also a potential cancer causing virus so the dermatologist switched me to protropic and I have not had a problem with it.

I do check my vulva area at least once a week and keep photos to track any changes. 

Personally I am happy with my regime and don't experience any (very few) flare ups a year.

I guess LS likes variety and not all lotions and potions work for everyone.

When I first started I did a month daily and then a month every other day and then cut it down to 1-2x a week. I have to admit I say 1-2x as sometimes I forget to apply it 2x as I don't really have any symptoms now.

keeping up with my coconut oil, borax, bicarbonate soda is just part of my bathroom routine when at home (when I'm out I tend to not think about it or worry). 

Ask your doctor about Dermovate when you see them next and see what they say as each case is different. I can't use it any more. 

Good luck x

Thank you Samatha.  Appreciate your help!

Hi.    I tried using Protopic as one day on and one day off for about 12 days and it seems to be working well.   However yesterday i became sore and swollen on one side of my Labia.   I put Protopic on last night and it burned for a few hours.  There was no itch.  This morning, no itch but still a little tender in the new spot.   What would you suggest I do.....continue with the one day on and one day off or use the Protopic for several days in a row?   Has this ever happened to you?  I must confess I ate a chocolate bar yesterday afternoon.  Would this make me flare so readily?  Thanks for you opinion as we are using the same cream and you have already experiments with one day on and off.

Hi, sorry I've been travelling the last few days. I used protropic 2x. Week only and I also use borax to pat down with after the toilet (see discussion an experiment with borax on this site). I've not used it more often as my symptoms seem to be more silent (most the time). I find I itch if I've eaten too much dairy or sugar which I do believe affect LS. I recall at the beginning protropic does cause a little burning, but for me this went away after a month or so. For me I find it's more disappearing parts that trouble me with the occasional itch which I immediately use protropic that day. Sorry I can't offer any more on the frequency as I have not used it more often.

Thanks Samatha    I am thinking along the same line as you.    I am now using Protopic every second night with one relapse....which I think I might have eaten too much sugar that day. Closely watching my sugar intake which is difficult for me as I have a sweet tooth

  I have cut out all added sugar and wheat and seem to be much better.   Planning to try 1 nightwith protopic and two nights without for a month and hoping to lead to only using protopic twice a week like you.  I am now using Emu oil and I love it.....it seems to calm any itch and use it even when not itching as a moisturizer. I  spay mixture of water and baking soda after urinating.

 I also use a frozen bag of peas ifthe itch is unbearable......I find if I am too hot, this is when the itch comes to the surface and the coolness of the frozen peas does the trick.

Hi, that's great, it really helps to find a Mixture of solutions as LS likes variety. I used the protropic last couple of days as I had some small paper cuts. I had also overdosed on cheese so I think too much dairy caused it. 

'A bag of frozen peas is handy for many things, not just eating 😀. Emu oil is great, I have some and I also have emuaid. Great to hear your finding yourself some relief.