Posted , 19 users are following.
I was wondering: What have we learned about LS? What are some of the things that work for some and not for others to control this disease? Have we, all of us together here, figured something out that makes a difference on how people can learn to live with LS, though not a cure? Are there some sure things that almost look like a cure? Just wondering.
0 likes, 108 replies
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barbara49618 hanny32508
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cynthia40883 barbara49618
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pamela41728 barbara49618
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Hi
Been on it about 6 weeks on and off cos I don't like using it. Just looking for something better to help myself. Really bad at the moment.
barbara49618 cynthia40883
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I'm sorry the MSM. I looked at several medical sites.
Would love to find something that helps but with all the bad reactions I get I tend to be cautious. No offense to you.
cynthia40883 pamela41728
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hanny32508 barbara49618
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jlb824 hanny32508
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I was dx in June and only was given estrogen cream. I am going to a dermatologist tomorrow. Is the steroid used for itching? I don't have itching all the time but when I do it's bad, a lot of itching on the anus. Does anyone have that too? Not sure I want to use a steroid there. As for the tears, Aquafor seems to help. Trying to stay away from pop and dairy. I seem to have tears all the time, just want it to get better.
melissa0 jlb824
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hanny32508 jlb824
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Of what I experienced is that the steroid stops the LS process. Taking out the sugar always has made a big difference. And when I take something sugary anyway LS 'wakes up' after two to three hours. And then I have to use some of the steriod again. So I find it better to stay away from any added sugar, among other.
Guppy007 hanny32508
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Hanny, what I have found works for me, and what I have learned is..
White discharge that looks almost exactly like milk is a precursor to a flare up... it is not thrush.
Sugar is the quickest way for a flare up, and so I try to stay off it.
Dilators should be used immediately after diagnosis, because if you dont you may find you wont be able to have sex with your partner at some point..this has happened to me unfortunately.
Clobestol is the cream for a nasty flare up, but I personally don't believe it needs to be used on a maintenance basis for women that do NOT have signs of LS (like white plaques of skin) I cannot remember the last time I used the cream, and I only bring it out when I have a flare-up.
I have found open LS Sores on and around the vagina dont need Clob, I believe it is too strong and harsh, and I have had success with using baby bottom cream on LS Sores for a couple of days and then afterwards switching to keeping the area clean and very dry by using something like a dusting of cornflour. This seems to dry up the sores and they go away. When first diagnosed I did try putting Clob on a sore and it made it a lot worse.
I found constantly applying creams/oils to the undercarriage is not a good idea, its just going to make you want to scratch and itch, being constantly moist down there, and definitely if you have cuts or sores down there. I do apply a small amount of Emu oil in the morning and before bed which helps stop fusing.
I don't believe there will be a cure until they start doing research on Lichen Sclerosus, and so lets hope that happens soon! I worry that more and more women are getting Lichen Sclerosus and nothing is being done about it.
hanny32508 Guppy007
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I think that too Guppy - the milky white discharge is not thrush.
?I have used Clob less and less. With the super hot days during Summer I thought I had to use Clob again and at first I did. But later I found that the baby cream with Calendula in it cools it somewhat and gives a pleasant feel of comfort.
?I don't do so well when all gets dry. That might be personal. And perhaps it has to do with the climate each of us lives in. With temperatures well above 30 degrees Celsius I need to keep things moist or fatty, or else adhesians form. Can't have that.
?Indeed, for now we have to live with what we got. This far many of us have managed to keep LS under control with the findings we shared.
?There are too many who have LS. I also wonder what all the chemicals we inadvertendly consume do to us, or the air we breath or the water we drink. I do best on the purest foods. Homegrown often so that I know what I'm eating, mostly.
?This far I haven't heard of creative research on LS. Just the man in Italy and stemcells, which is not a permanent cure and extremely expensive to boot; and the doctor here on this forum that we often refer to. (temporarely forgot his name)
?One question - Dilation has been so important to me. After the dilation procedure in the hospital I had no idea how important this would become for me. You're right - it should be recommended as soon as a person is diagnosed. Is there nothing more that can be done for you?
Guppy007 hanny32508
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Hanny, I think my situation is a little bit unique...What happened was that I was diagnosed with ulcerative colitis in 2013, and then about four months later I was diagnosed with LS. At the time I also had a lot of stress going on in my life and dealing with and handling the Ulcerative Colitis was my main priority, and sex was not really something I thought about at the time. Also, my Doc neglected to mention fusing and dilation and so I didn't feel like I had anything to worry about, I just thought we would resume sexual relations when I had the UC and LS under control.
The crux of the problem is that I married a Scotsman, and he is nearly 6' 5" tall and so he is large everywhere, and because I didn't dilate I am now too small for him!! if we had had regular sex this might not have happened. I did try dilating about two months ago, and realised the largest size was his size and I havent been able to manage that yet..sorry if this is too much info, but it is a harsh reality of having Lichen Sclerosus and I bet I'm not the only one. I think I might have to try again with the dilators I have kinda given up a bit to be honest, but it does worry me that we cant have sex.
hanny32508 Guppy007
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Guppy007 hanny32508
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jeri24294 hanny32508
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I agree with you Hanny...I find that keeping the area dry is better and use cornstarch with the Clob. I also still drink alcohol and eat sugar in moderation. Sorry, I'm not giving up my favorites in life. LS be damned! (But I'm old...73)