I regularly see a gynecologist and at my last appointment things were a bit grim. My symptoms have never really been under control since I was diagnosed and I go through periods of it being really bad and then times where things are okay, but I've never really had a remission period. My skins changed a lot down there, everything's still there and such but its just changed. When I first met my gynecologist she recommended I take a picture for comparison reasons but being a 20 year old girl, I didn't really fancy taking a picture of my vagina and having it saved anywhere, What if someone seen it ? :o however, I wish I had because to compare a then and now would just make it so easier for me to show doctors how much everything has changed. So for anyone with LS that's still going through changes, I say take a picture. And keep it hidden in a file somewhere so no one can ever ever find it haha.
My gynecologist has referred me to a vulvar specialist doctor who I am due to see on July 3rd. Just under two weeks away now. I'm terrified but at the same time I am so hopeful that this doctor is going to be able to do something to help me, or atleast put my mind at ease. Since my last gyne appointment I looked on the internet for different ways of helping L.S, any alternative therapies or changes I could make to my lifestyle or diet. The most interesting, and somewhat reliable theory I came across was to undertake a Low Oxalate diet. So basically oxalates are molecules that come out in your pee and irritate the skin around that area. Which can make your skin even worse if its already sensitive. (I cant explain this very well but there is info on it haha)
This is a theory that has little reliable research and literature but the vulvar pain foundation recognize this diet and have even brought out a cook book so I thought its worth a go. The diet is quite limiting, there's loads you can't eat, and every website gives you different food list of what you can and can't eat. Things like bread, pasta, potatoes are medium-high oxalate, spinach is probably the most oxalate rich food about, which is devastating because I love spinach!! I stuck to this diet religiously for a month. My diet consisted of iceberg lettuce salads, lots of meat, scambled egg's, rice, noodles and rye bread. You can really eat as much diary and meat as you want. Bad news ladies, chocolate is a no no!! However, you are allowed white chocolate so it isn't the end of the world.I got a bit fed up with this diet even though my skin wasn't as uncomfortable, doing a pee didn't hurt at all ever! But I've been eating all sorts of nonsense lately but tomorrow I'm going back on my oxalates! I felt it helped me. A lot of people are really cynical about it but if its helping me feel better I'm going to do it as much as I can. There's quite a few different websites that talk about it, the vulvar pain foundation website has a wee bit and it's good because its linked to the same kind of discomforts as L.S.
For anyone struggling with L.S I recommend having a look online at all the different resources etc and giving it a go! Isn't going to do any harm. I recently had a look at one site and it stated that often there isn't much difference til 4-6 months down the line so that's along time but I felt some small benefits quickly !! For anyone with any questions I'd be happy to help as much as possible !!
Peace and Love