Lichen Sclerosus
Posted , 9 users are following.
How frustrating is this horrid disease. Have suffered over 15yrs now and am in my 60's. How so many of us suffer in silence as we rarely speak about it to anyone, no-one not experiencing it would understand. It took some years to diagnose, 3 gynocologists couldn't figure it out. Finally my GP sent me to a Dermotologist who indentified it immediately. The usual steroids were prescribed but I too felt unsure about the long term effects of them. I stumbled across Perrins Complete and Perrins Blend while searching on the internet. I felt excited and ordered some immediately. That was at least 2 years ago now. It has been extremely efficient. My dermotologist was bouncing off the walls with delight. I have continued to use it faithfully since. However, in the past month or two I am experiencing the worst outbreak of this wretched disease and have moved my appt with my Dermotologist from November to July. I am starting to wonder if diet plays a part and perhaps stress/anxiety which I have had a lot of in the past few months. I am continuing with the Perrins Blend at night and Perrins Complete during the day. With the Blend it does stain so get yourself some old nickers and pj bottoms for when you are using it at night. As the Blend is extremely thick get an empty container and place some Blend into this and add just a tad of the complete. This makes it easier to apply. I have still used the steroid cream once or twice a week. I also use no soaps or talcs and wear cotton nickers. Just feeling a tad flattened right now with this condition flaring up as it has to the worst it has ever been, Has anyone tried anything else with any reasonable success? Will be interesting what the Dermotologist says. Will keep you posted. Hang in there girls. If we all communicate and discuss our experiences we might stumble across a cure.
2 likes, 17 replies
viv15674 Pinny54
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Pinny54 viv15674
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Thanks for your reply virginia, I will be seeing my Dermotologist early July but saw my GP last night. I asked her about diet etc and she felt that one would have to dramatically have changed their diet to have caused the disease to relapse. She said often diseases relapse just because they do. Just the same I have decided to reduce sugar not that ate much anyway. Having noticed for the first time the white lesions I attacked it with Perrins Blend and in two days they are gone. It really is a successful product but may not be for everyone. As it is strong product it can cause burning. As my skin is irritated I just go back to using the Perrins Nutra creme which is a gentle moisterising creme. In fact they advise that you start with this creme and work up. So I was happy to see the white lesions disappear but will still see the Dermotologist to be sure everything is under control. Hopefully this itching will start to settle again as well. I am not sure if this is hereditary or not, I haven't read anything to suggest that so I really do hope that it isn't and your precious little girl does not experience it in her lifetime. Hopefully as the years progress an actual definite cause will be diagnosed, Keep up with what you are doing because if it is working it maybe just the ticket for another anxious sufferer that will work for her too. I think all of our experiences and successes are valuable. Thanks again.
AnneMarie4321 Pinny54
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Hi, Pinny! I hope you've been reading some of the LS threads here and the personal experiences of other LS sufferers has helped you. Many of them have figured things out on their own that their doctors can't figure out or have no clue about. My point being that it's fine to listen to your doctor, but you have to be your own advocate as well. Plenty of ladies here have figured out that a change in diet -- small to drastic and everything in between -- HAS helped. I include myself in this. Giving up wheat and sugar has kept things quiet "downstairs" for months. (Plus other tips gained here, such as coconut oil, etc). Further research I've done on my own about wheat in the diet has validated why it wreaks such havoc in some people. One of them ME.
I don't know your doctor's definition of "drastic", but what we put into our bodies has consequences-- some more than others. Each person has to find the unique combination that works for them. Doctors should be sensitive to that fact.
So, yes, find a doctor you trust and work well with -- but ultimately listen to your own body. The anecdotes here are what helped me figure out how to get back on track. Even better than my doctor, because there are so very few experts in this condition. This site has been a gold mine for me.
I wish you the best with it.
Okpeeps Pinny54
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Very difficult to not be stressed in real life and diet dies play its part too. I hope your specialist can offer some further advice and help to relieve your suffering. What would we do without this site ? I have no idea. Take care and let us know how you get on
viv15674 Okpeeps
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Okpeeps viv15674
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Thanks again
Pinny54 Okpeeps
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AnneMarie4321 Pinny54
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jeanniej AnneMarie4321
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Hi AnneMarie - although new to LS I had to go back to the gynae yesterday as I was worried the Dermovate may have made things worse and I was in a lot of pain. I asked about diet - specifically did he have an opinion on excluding wheat and sugar - and he advised against it! I realise we are all different and what works for one doesn't work for another - but I feel really confused. In the past I have improved my health in general by being on an "elimination" diet so I think I will give it a shot anyway. I have itchy patches of skin on my chest and patch which have been there long before the start of LS so a diet overhaul might be wise, even if the gynae doesn't support it. I can't see it can do any harm to try?
AnneMarie4321 jeanniej
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What I tell myself is "They are not God" -- there is plenty of anecdotal evidence that can be helpful. Doctors are so busy -- they have personal lives, too. I hardly think they're combing the Internet for treatment testimonials from regular folks and disseminating the information in their quest to help their LS patients. Placing total and blind trust in doctors is something I can't fathom. I double check to make sure I'm following the best regimen I can for the LS. Also have read about what wheat does to the body. As LS is thought to be autoimmune, there are plenty of anecdotes about people giving up wheat and sugar and their autoimmune conditions markedly improve. Doctors tend to want to load people up on medications. If my doctor dicounted the role of diet in our health conditions, I'd find myself another doctor. I'm not saying anyone else should feel that way, but it would be a definite red flag for me.
Guppy007 Pinny54
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All the best.
Pinny54 Guppy007
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Yes, I asked my doctor last night but she thought that you would have to have dramatically change your diet to have caused the disease relapse. But just the same I have read a lot about sugar so have decided to reduce sugar whereever possible in my diet not that I really eat a lot of it but it is usually hidden where you least expect it. I don't add it to anything or eat a lot of sweets but occassionaly I have been known to have a splurge or two. ha!
Thank you
Guppy007 Pinny54
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Pinny, I noticed your post "I asked my doctor last night but she thought that you would have to have dramatically change your diet to have caused the disease relapse"
This is the kind of information people get from their doctor which is just not correct, it is just plain wrong, the doctors don't know this and yet will give out such wrong information, and women new to LS don't realise it either. Most women on this site know that if you are one of those that are affected by diet then it can take less than week of eating the wrong foods to trigger a flare up, a weekend of indulgence can do it. I just had to mention this. I think almost everyone with LS is completely clueless as to how little sugar they need to trigger a flare up.
I think this is the number one reason why most women continue to itch, have flare ups etc because they simply dont realise that and continue to think they are eating healthily when they are not, not really, not for Lichen Sclerosus.
Okpeeps Guppy007
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Have to agree with you Guppy.... Apologies for sounding like a broken down record but diet is key with this condition ... We all can't be wrong. We will try anything to ease these symptoms.
jeanniej Pinny54
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Hello Pinny; I am new to this condition (diagnosed one week ago) - so am interested to hear that you have had success with Perrins. I understand the feeling of being "flattened" - as that is how I feel now that I know a little about the condition. One week in, and I was feeling optimistic about the steriod cream which seemed to have improved things, but yesterday things took a definite downward turn and I have had such pain and discomfort that I don't have much confidence going forward. I will try the Perrins as so many seem to recommend it. Hope your current flare up is soon under control and thanks for your advice.
kay70189 jeanniej
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I was diagnosed 1 year ago. It can take a while to get LS under control. I found Zink and castor oil cream works really well whilst you are getting the balance of steroid application right.
Hope this helps.
Kay x
jeanniej kay70189
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