Young LS sufferer. Scared :(
Posted , 10 users are following.
I'm new to this forum. I guess i'm not sure who to turn to anymore regarding this. I'm 22 and I was first diagnosed with LS 2 months ago via my specialist ob/gyn. I was put on Disprosone OV - a steroid treatment initially twice a day for the first month then once a day for another month.
The white patches are still there. They use to have a slight rough/thickened texture and that seems to have gone now. But its almost been two months on treatment and they are still there? It feels like they will never dissapear.
I'm so scared of getting VIN or cancer from LS. I've read some horrific stories of women with VIN who have repeated surgeries only to have lesions return a few months later.
My symptoms are burning and soreness - i've never experienced itching. And for some reason doing kegel exercises really hurts!? Anyone else have this problem? My urethral meatus has LS on it so i'm assuming its making everything extra sensitive and sore down there. I don't seem to have issues with urination though. My perineum is also irritated and when I walk it can get annoying as the skin rubs and causes friction.
I'm just so scared about this. I honestly don't know what to do to relieve my fears. All I can see in the future is me having discomfort in my vulva and costantly having to check myself.
0 likes, 34 replies
renee77108 jules1100
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athena93317 jules1100
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renee77108 jules1100
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kathleen65757 jules1100
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It is scary but try to distract yourself with a happy life.
my main concern is atrophy which has been something that has occurred in recent years.
At least it can be treated and monitored.
Please know you are not alone and you can still have a good life and future with this annoying condition.
hanny32508 jules1100
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And I swear by the baking soda spray after every bathroom visit. Also take baths with baking soda. LS will always be there, but you can make it liveable.
Read some of the discussions on this site, there is a lot of helpful stuff. Watch Dr. Goldstein's material. The more you know, the better you will feel that you can somehow control this 'beast'. And yes, the main medical ingredient to control LS is still Globetasol, thin layer applications.
suedm jules1100
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read the helpful threads where a lot of sensible and supportive advice given. Also check out the new to LS on the home page,
the very potent steroids are used as the scar tissue in LS needs to be thinned
keep friction to the minimal go commando if necessary- wear long skirts, no trousers or tights
keep body fluids off the area by covering with a barrier ointment of your choice,about 20 minutes after applying the steroid, moisturing the area is also very important to keep the area as healthy as possible.
some find reducing the sugar content in the diet is helpful.
Sadly there IS NO CURE at present, there is research starting being undergone. But it will be slow. The best we can manage at the moment is to keep the symptoms as comfortable as possible - watch for fusing and splits sores are go back to consultant if there is ANYTHING you are worried about,
good luck and Don't stress too much, none of us want thing horrid condition, however, as some here said at least the condition doesn't show ,and of course it is not life threatening. Cortisol sin the body can cause heart conditions that are far worse. So take heart
best wishesSue
suedm jules1100
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But I don't think any of us has undertaken or taken part in double blind research, so everything we say is anecdotal. We did try to get an information page up, however Alan the moderator undertook this and put it up and gave links to the advice. This site was started up by medically qualified practitioners as I understand it. At times in the past there contributers who were convinced the medical path was not the path they wanted to follow so the Alternative therapies site was set up.
i am aware of an artist in Brisbane who wants to have a website , I hoped to help with a local computer expert, but they were not in a hurry to help!
I hope you take the time to watch the webinar, it takes an hour and explains the condition in detail, also look at previous thread
best wishes Sue
Morrell1951 jules1100
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If you vist your ob-gyn every six months you don't have to worry about VIN or cancer. They'll catch the very first inkling of abnormal cells. Dr. Glodstein's record backs up his confidence in this.
Eating a lot of sugar (or even a moderate amount if I'm stressed-out) will cause a yeast infection and a flare-up of LS. They often go hand-in-hand, at least in my case.
kathleen65757 Morrell1951
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Guppy007 jules1100
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Jules, I think someone already mentioned, that whilst we can offer some good advice, and valuable experience from people having had this condition for many years, we are all different, and what works for one person may not work for another, which brings me to the fact that the Disprosone does not appear to be doing its job, and so you might want to go back to your doctor and ask for Clobetasol as I think you have given this cream plenty of time to take effect, and possibly now need to try something different.
I had the same issue as yourself, and the Clobetasol cleared it up quite quickly. These are my initial thoughts, and bearing in mind your obvious distress and discomfort, I think you also need to review your diet immediately. I would initially cut out all sugar, I cant stress enough how bad that is for you with your flare up, and once you have got things more under control, you can always re-introduce some treats, but for now I would stop taking any sugars.
If you don't start to see any improvements after changing creams and cutting out sugars, then if I were you, I would then consider going completely Gluten free and Dairy free, and see how you get on. Sometimes it is necessary for you to try these measures, because I do believe that diet can play a strong role in helping relieve or improve this condition. These measures may not work or apply to everyone of course, but for some it is crucial to pinpoint anything that is going to trigger flare ups, and take the appropriate restorative action.
For many years I would enjoy bread, except I would always complain to my husband that the problem with bread is that it made my stomach feel very bloated. It never occurred to me that the problem lay with me, not with the actual bread, and that I could be Gluten intolerant, and so I blindly continued eating bread, pasta etc. Then last year I came down with four auto-immune conditions, one after the other: Ulcerative Colitis, Lichen Schlerosus, GERD and Celiac Disease (in that order) and in addition to this I also had really chronic Candida, which is very difficult to eradicate. This was extremely devastating for me, and my body was clearly telling me to wake up!! ...and that is why I mention this to you.
If you are ingesting food into your body, that your body is allergic to, it is tantamount to slowly poisoning yourself, and therefore if you have LS this is going to aggravate your condition further, and if you are not suffering currently from this condition, it can even cause LS in some cases...
kathleen65757 Guppy007
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Guppy007 kathleen65757
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Anyway, everyone has their own opinion, ideas, and thoughts, and have a right to share them, especially if they have specifically been asked to do so.
kathleen65757 Guppy007
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Guppy007 kathleen65757
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I am not sure why you think people on this site have a tiny bit of experience, many woman here have had this condition for years, and are therefore in a position to give help and guidance to people newly diagnosed.
Personally this last year has taught me that doctors don't know everything, in fact some aren't very good at what they do!!! which is why you have to make sure you have a good understanding of this condition, or any other illness you may have.
Morrell1951 Guppy007
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renee77108 Guppy007
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Guppy007 Morrell1951
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I was totally unaware that farmers are spraying crops with poison, and so here is something you should all take the time to read...
I have not found cutting out Gluten stressfull actually, its really not such a big deal, but I completely understand why some people are stuck on this, and thats fine, each to their own.
Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Guppy007 Morrell1951
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Guppy007 renee77108
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I would imagine you would only need to try this for a month or so, and if you do not feel any benefits after that than you can always stop and go back to your normal diet of course, no harm done.
renee77108 Guppy007
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renee77108 Guppy007
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suedm kathleen65757
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Healthy sensible eating is a key to good general health - moderation in all things. Often there IS no answer to disease or ill health- the medics are not able to cure everything and we individuals have to take charge of our own bodies as far as we are able. We cannot affect our genetic make up or our response to stress. Farmers have been guilty of putting unnecssary antibiotics in our meat - in order - they believe in keeping their stock in a fit condition to sell. Cows are given hormones to keep them lactating and weed killers and fertilisers ar put on the land to increase productivity, there are so many imponderables that we cannot take charge of.
We are all in differnent parts of the world, different ethnicities, incomes genetic backgrounds and experiences
A forum like this is wonderful to help people understand they are not alone that there are many ways to try to improve their conditions and i said that we can ONLY give OUR own experiences, however i do believe that should be done in a manner that indicates what helps US inidivually. IF it helps others and that is confirmed by them it improves matters for them too, that is wonderful. In this way we may be able to build up a repetoire of Good Practice.
I agree with Morrell one should NEVER remove staple items in one's diet unless it is confirmed that there is a digestive issue. I strongly believe in impiral evidence, proper research undertaken by scientists - or others with a proven track record. Everything else is anecdotal. Thank you for your sensible thoughts
hanny32508 Morrell1951
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Patients do not get healed - that's a sad thing. Small wonder people are looking for other ways than what the doctors in general prescribe. Many on this site have expressed the shortcomings of the medical system. Doctors are also only human beings, and work with what they have. We already know that with LS they don't have the best answers. So it's up to the individual to keep using their 'noodles' to find the best way to live with conditions the medical world has no answer for.
Let's support each other, please, we were doing so well. We may have different experiences and consequently different opinions, we all have LS. The art is to make this condition liveable.
jules1100 Morrell1951
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athena93317 kathleen65757
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Guppy007 athena93317
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As a reminder this is extract from what I posted..
"If you don't start to see any improvements after changing creams and cutting out sugars, then if I were you, I would then consider going completely Gluten free and Dairy free, and see how you get on. Sometimes it is necessary for you to try these measures, because I do believe that diet can play a strong role in helping relieve or improve this condition. These measures may not work or apply to everyone of course, but for some it is crucial to pinpoint anything that is going to trigger flare ups, and take the appropriate restorative action"
I cant see anywhere were I dictated what the poster should be doing. I think in fact its a fair and balanced view. If you are struggling with LS and OLP wouldn't you want to try something to help your poor struggling body? It is unfathomable to me that people want to shut other people up from offering what might in fact be good and helpful advice..
Finally, if somebody talks to me in such a rude high handed way than I am going to respond likewise.
Guppy007 hanny32508
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I was just trying to help after all.
hanny32508 Guppy007
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renee77108 Guppy007
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Guppy007 renee77108
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Interestingly enough I am suffering with a terrible allergy at the moment, in fact for a while it has kept me housebound. Its an allergy to perfume, but its severe and I cant use any cleaning products in my house, soaps, deodorants etc, as any sort of fragrance will give me a migraine. Its a terrible thing, I am not sure anyone can really understand how debilitating it is because just standing in the supermarket waiting to pay for my groceries puts me at risk of someone passing by wearing perfume, and one whiff and I am ill.
Recently though after a lot of research online I discovered a company that produces homeopathy treatment for people like me, and others that suffer from allergies and so I ordered this product and it does appear to be working, I have only used it for a week, but I am optimistic, although I am not sure whether it will cure me or if it is temporary.
I cannot give the name of the product or company that produces these products for severe allergies, but certainly if anyone is interested you can PM. I agree that it is good to share ideas.