Wednesday, 22 August 2012

A wee bit late...

Why am I so rubbish at keeping my blog up to date? Surely it can't be that hard? To be honest I've been busy the past few months.... Finished university.... yaaaay so now all I need to do is get a job... I'll get there eventually.

So my LS... well I've got quite a tale to tell lets be honest... I went to clinic that I was referred to by by gynecologist. The doctor sat me down and opened with... "so you've been referred from the sexual health clinic with a  bit of an itch"  !!!!!!! I was sooo irritated by that comment but I said, no I've been diagnosed with LS and I've been receiving treatment for the past 18 months. The doctor then went on to say I don't know why you're here.. you're at the wrong clinic.... blah blah blah. It was a disaster of an appointment. Then it clicked for me, I had been given an appointment for September, but then later got a letter to say my appointment had been moved to July and as it happened they had moved me from one clinic to another. So a total waste of time. I was able to get an appointment for the RIGHT clinic the valvular/dermatology clinic. The great news is that I have NO active signs of Lichen Sclerosis however I have quite substantial regression... aka my vagina is disappearing!! pretty much. The doctors were a wee bit concerned because according to them usually the regression goes hand in hand with pretty severe flare ups but who knows. They pretty much said there's nothing they can do for me. If I had a tenner for every time a doctor said that to me!! But they have started me on estrogen cream? just as a shot in the dark to see if it makes any difference. I have to say... I really think its made my skin a lot fuller? I'm starting to actually have labia minora again... woohoo. I don't know if anyone has tried estrogen cream or talked about it... I'm not really sure but if you can and you haven't then talk to your doc about it because its made a massive difference to me.

I use dermovate twice weekly and my estrogen cream once daily.

Finally it seems like things are almost getting back to normal-ish?

Who knows what will happen but I have to say the clinic (the right clinic) I went to was fab. The doctors knew exactly what they were talking about and what to look for so don't settle for a doctor that doesn't have a clue!! Find someone that knows or is willing to find out because it can make a world of difference!!

Hope all is well,

Peace and Love


Sunday, 24 June 2012

Where I'm at right now.

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

Tuesday, 19 June 2012

What is Lichen Sclerosus?

There's no simple or really non-awkward way to explain what Lichen Sclerosus is. 
Basically it's a skin condition that affect the skin, generally around the genital area, Vulva in the females and penis in men. However the condition can affect other parts of the body, so its important if you have this condition look for the signs! 
Although this condition can affect men, it is more commonly found to occur in women. 
There's no real explanation as to what causes Lichen Sclerosus. The most common theory is that it is an auto-immune disease, so basically your  own body attacks your skin. And as of yet there's no cure. 
The symptoms of Lichen Sclerosus are itching, dryness, inflamed skin. There tends to be white, or grey patches of skin around the affected area. 
To treat this condition topical steroid creams are used. This can lessen the symptoms and reduces fusion of the skin etc. Also a good moisturizing cream needs to be used, morning and night and avoid using any irritants near the skin such as soaps. I use epaderm emolient when I'm in the shower. 

Everyone with Lichen Sclerosus is different. I use Doublebase cream, morning and night. 
I use my steroid cream once a night. 
Some people may say that's too much because steroid creams can cause other issues such as thinning of the skin, but right now I need this much cream to control my symptoms. 

One of the things I found most difficult about Lichen Sclerosus is the lack of information about it. There was no one really to go to to ask questions, cause no one really knows what it was. I joined a forum that discussed LS, and it was maybe the biggest mistake I've ever made. A lot of people are very angry and bitter about their condition, didn't hesitate when telling me how miserable it could be at times and all the changes you have to make (I can no longer where nice sexy pants, its comfy cottons pants and I can't remember the last time I got a wax!!) but no one thought to say to me, its not the end of the world!! 
I'm not going to kid, its RUBBISH having this! 
But being angry and resentful of all the changes isn't going to help. 
In a lot of aspects L.S hasn't had a massive impact. I can still have sex although there have been periods of weeks where I haven't managed. Some of the older women that have been married for 30 years and have kids that are all grown up have real issues about not being able to have sex as much anymore and are worried about their husbands leaving them. 
Really makes you think, after all that time being married, having kids and you're worried he's going to leave you because of a medical condition?
But none of these people even think about how they may be making the younger generation of L.S sufferers feel. One of my biggest fears now is if me and my boyfriend ever break up. I love him to pieces so obviously I don't want us to break up. But if for some reason we do, I really doubt I'm going to find another man that can be so patient and understanding with my condition. 

But there are partners out there that will accept it, and if they aren't willing to take it slow with sex and be patient and careful with you, then they aren't worth the time!!

P.S... I know there are times where having sex can hurt and be a bit sore, but regular sex means that the vaginal walls will be stretched and there's a smaller chance of everything getting too tight. So make sure you are READY for penetrative sex, lubrication is highly advised if you need it. And go for it. 
(But avoid sex if you are tooo sore and have cuts etc.) 

Monday, 18 June 2012

How it all started.

The best place to start is with the beginning. 

Last November I had a coil fitted. I had been on the pill for a while and decided it was time for a change so off I went and got my coil fitted and I was to return in 6 weeks to get it checked. 6 weeks.. or maybe about 12 weeks (whoops) later, I went to get my coil checked. Me and my boyfriend had just had a small break up, it lasted a few days and then we were back together. But, since we had got back together I had pain and itching 'down there'. All I could think was 'That swines went out and slept with someone else and given me an STD'. I knew when I got my coil checked the doctor would pick up on in so I went almost certain that I had a STD. The doctor checked my coil, said everything looked fine all the usual chat from the gyn doctor. I got dressed put my clothes back on, and then she sat me down. 
"I noticed that you seem quite irritated down below" she said, and all I could think was 'Here it comes, STD!!' and then she told me I think you have a skin condition, it's called Lichen Sclerosis. Que me looking very confused and shocked. 
A SKIN CONDITION, DOWN THERE? Like eczema?? SAY WHAT?! I don't think confused even begins to cover it. 
The doctor gave me a card with the name of this skin condition on it and said to Google it when I got home. She gave me a tube of cream and told me to use a pea sized amount, morning and night, every day and to avoid using soaps, and then sent me on my way. And so my story begins. 

Saturday, 16 June 2012

I'm not very good at blogging....

Hello... well my last post was in January? how rubbish am I... i noticed I actually have some page views... a wee bit of motivation to actually do this now! 

I'm a person that really struggles with my Lichen Sclerosis so I really want to use this blog to not only help every other person out there with their own issues, but also address my own issues and really just get over this. Life has to go on and Lichen Sclerosis is here to stay so 


I'm not going to promise that this blog is going to change your life... but I want to make a promise to myself to change my own life, and hopefully this is all going to help !!

Over and Out.

Peace and Love xox

Wednesday, 18 January 2012

Getting Started =)

Well, this is my first go at writing a blog, and its about something that's so personal to me so I'm not quite sure how its all going to work out!! But I'm going to give it a go and hope for the best, and patience from anyone who chooses to catch up with my blog!! 

Well I'll get the introductions out the way, I'm a 21 year old girl and I suffer from a skin condition called Lichen Sclerosis! I was diagnosed with this last January after a routine check up. I'll explain more about all this later, but for now I want to keep it short and sweet !!