LS

Hi Lara. You are unlucky like the rest of us to have got LS, but lucky that the itching is not too bad.

Others posters will be along shortly I trust, but in the meantime I myself have heard of no cure for the whiteness.

Try to base your self esteem more on the person you are and not your appearance down there because in the big scheme of things , that's what matters most.

Your future boyfriends/partner most likely won't give the patches a thought. It is just we women and girls who are so self conscious about it.

LS is horrible but we aren't, okay? Includes you. xx

Hi Iara,

LS at a young age, no fun.

You don't describe whether you are under the care of a doctor. Who may have prescribed a thing like Clobetasol?

Hi Hanny. I have never had the white patches myself, just the rest, so I was hoping somebody could help Lara. Have you personally found that the dermovate / clobetasol actually improves the whiteness patches then?

I've had LS since I was about 17. I am now 57! I hare being the barer of bad news, but the white spots never go away. My oldest patches HAVE faded somewhat so they blend in more with my skin. You will probably have periodic flares. On this site you find plenty of support and understanding. You do need to be on a super potent steroid cream such as Clobetasol. There ARE times that we know more than some of the doctors.

Hi Lara,

I've had LS since I was a little girl. It's come and gone, causing plenty of trouble along the way, but I've had plenty of great sex, a number of husbands and two great kids. So, it's bad and because it's insidible we don't get much sympathy, but you can have a pretty normal life. Just try to remember sex should be pleasurable to both partners. Never grin and bear it.

That is what I have always heard Mary. The clobetasol works for the itching and supposedly slows the progression of LS but the white patches stay.

Don't know how young you are Lara but I have heard that if you get LS before puberty, it often vanishes after puberty.

Hi Joodie and Lara,

It is hard to say what has helped. In first instance it was the clobetasol that helpt definitely with the itch. At that time I didn't inspect as closely as I do now, so I can't tell you what it looked like then. In combination with the clobe (now a maintenance amt) I also use emu oil which has Omega 3 in it. Plus I am taking a strong Omega 3 capsule for a month now and it seems to make some difference. Next to that I have been using something that is called Bottoms up Balm, a vitamin D cream, and tried a bit of an olive oil combination. (the olive oil not my best experience) All together I find that there is a fair color of skin at present, but don't know what "did it". I use a variation of things depending a bit on how I feel down there. It might even be the variation that "does the trick". I would encourage careful observation as to what will have the best result.

Furthermore, take some time to read all the writing already on this site. There may be something helpful for you or else some comments that may lift the spirit.

Thank you Morrell for telling Lara about pleasurable sex. A caring partner is what you're looking for.

I am 16 in a few weeks, and had the white patches since I was 14 after I started puberty will they ever fade?? I have small ones but one large one and it's really disturbing, I am being prescribed today something so I will let u know what it is, but no one has even spoke about the patches so I thought I was the only one! does the cream help it??

Hi Lara,

I'm so sorry for you having to be involved in this so young, but at the same time I'm a bit envious, because you have a chance to be well looked-after. The appearance of the white skin is not the big problem. That skin is very poor quality skin and it scars easily, changing the 'architecture' down there. Do read up on LS and do what the doctors say and any other moisturizing that helps you.

Hi Lara - like all the other supportive ladies on this site, so sorry to hear that you have to deal with this at such a young age. I am in my early 60's and I can't imagine what you must be feeling with this. I would like to ask everybody if they have seen a link between low self-esteem and LS?

I had a nervous breakdown 4 years ago which really affected my feeling of worth and morale - whenever I have a situation where I am stressed or lacking in self-confidence, then I seem to have a flare-up. I recently did a top to bottom (!) list of my ailments to see if anybody had a similar list. I then mentioned my poor sleep pattern but I did not refer to my mental or emotional state. On the outside I seem to appear confident, witty and out-going but in reality I lack confidence in my ability and worth and this seems to coincide with the onset of LS. Has anybody else noticed this or am I a nervous wreck clutching at straws?!

Keep in touch Lara and everybody else as it is good to know that there is understanding and support out there.

Hi Barker and Lara,

It would not be honest to say that I was not mentally affected by this illness. I was and sat in a deep hole fora fairly long while. There is a lot a person has to overcome with this debilitating LS that never seems to take a long enough break. I was really close to being severely depressedcombined with feelings of extreme loneliness.

But then I went on a search, trying to find out as much as possible about this enormous change every person with LS no doubt has to go through. Finding websites like this one, personal stories and such have been a big help. Learning that there is a Lichen Sclerosis Society or two, even if not in Canada, where I live. Receiving the lecture via a friend about a doctor in Vancouver area who has done some research. These kind of things helped to lift my spirit. Me accidently meeting a person who knew exactly what LS was all about and the suffering that comes with it. Someone who understood what I was "taking in".

I guess I needed some kind of recognition, like other people receive when they talk about being a diabetic, or whatever other well known illness people can talk freely about. Gradually I learned not to be so embarrassed when taking my special "seat" along on days that I can barely sit at the table. Needing extra time in the bathroom and warm water and "stuff."

No longer a nervous wreck but now fighting. I have put the word file on a disk and gave it to my doctor. It is really necessary that more and more doctors become fully aware of what this illness actually brings and the enormous impact it has on a person's life.

Thanks for your sharing. It helps us all.

I also have psoriasis and have been diagnosed as such much longer than LS. For most of my life I thought they were one thing. I know for sure that my skin – especially on my face and neck – immediately reflects my emotional state. LS is less direct if it's affected. I can't look back over my life and be sure that the worst years with LS were also times of emotional upheaval. It's been sort of a long wave over the 62 years.

This site is such a good thing for the newly-diagnosed to have free access to, since talking about it with others is mostly not an option. Also for the newly celibate, like me. That's where the possibility of depression comes in. There's a certain hollowness, flatness to life that's different from when I was a devoted Buddhist and chose celibacy for seven years. But at least I have a partner who knows that's off the table and I'm an artist, so I'm always deeply absorbed in projects. I must be doing OK, since my face doesn't look like a pizza.