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Hi everyone, I was diagnosed with Lichen Sclerosus earlier this year, and it seems like most others, I have been given, or found very little information. Unfortuneatly for me, the area affected is quite extensive. At the time I was working in a palm production nursery which was a very hot, humid environment, (a very physical job) and involved bending all day wearing shorts. I am using clobetisol which has quite quickly had positive results. But I still have lots and lots of questions, particularly with regards to lifestyle. My favourite type of (cheap) holiday and forms of exersise have been long distance hiking (on average 5+days, and long distance motorcycling (My last 3 week holiday was a ride from Sth East Queensland to Katherine Gorge. I then hiked 65kms to Edith Falls, then continued riding through Kakadu National Park before riding back home)
My questions are as follows....
1. Once the condition is "managed", can I then go back to riding my motorcycle?
2. Can I wear jeans when the condition is "managed"
3. Is long distant hiking still an option for me? This involves wearing long pants, getting hot and sweaty, and at times skipping showers.
4. Why shouldn't I sit for too long?
5. Should I avoid getting hot and sweaty in general?
6. I live in a hot climate and I am very, very hairy down there, so the entire area is often hot and sweaty. Can I still trim/shave excess hair in an attempt to keep the area cool?
7. Should I consider moving to a cooler climate, or consider air conditioning a room in my house?
8. What is the best method for applying the Clobetisol? (The chemist gave me opposite instructions to the dermatologist) ie - straight after a shower, or wait till the skin has cooled.
Thank you in advance for your replies
0 likes, 6 replies
Hello there, you have come to the right place for support and information but remember although we all have the same condition, we all react differently and all have different opinions. Despite this I feel we are all united in wanting to pass on what works for us as individuals and all want new members to find relief and lead a normal active life.
1 My condition is well managed at the moment and I have returned to the majority of activities that I had prior dignosis and treatment. You must never get complacent though and will always require good maintenance with whatever you have found works for you. I have to use steroid treatment twice weekly otherwise my condition continues to do its damage and what I had not initially realised is that it does this silently and almost without symptoms. One day you just realise that you are changing appearance and things are shrinking. Always keep an eye on it.
2 I do wear tight jeans on occasions but never for long periods and never if I have a flare of the symptoms. Whenever possible and at home, I go commando.
3 I think if you are going to miss showers then try to have some alternative. I have been in a similar situation and found that using a handful of dermol wash with hot or cold water is sufficient to cool down and maintain hygiene. I just transfer a little to a travel pot/bottle and it goes a long way. Also Bicarb of soda in a concentrated solution with water and sprayed over the area soothes and freshens.
4 I'm not quite sure what sitting dose but it definately makes you sore when you have LS . Plane, train and long car journey's are a nightmare. My advise is just get up as often as possible and have a rinse or apply some cooling moisturiser.
5 If I know I am going to be in a situation that will make me hot and sweaty then I usually protect the area well with a high performance barrier such as White soft parafin. In between I use Coconut oil as a moisturiser and lubricant.
6 I am fortunate that I do not have lots of hair but I can see no reason why you cannot remove hair. I would think the biggest issue would be trauma. When LS is active, the skin tears very easily. then of course you are at risk of infection. I suppose it depends upon your method of hair removal.
7 I would not let LS dictate where I live. You control it, not the other way around.
8 When the skin is warm and soft (after bathing or a shower) this is absolutely the optimum time to apply steroid treatment. Oil based is preferable to cream as it is more readily absorbed. It is also recommended that you massage the steroid in for around 90 seconds as this further aids deep tissue uptake.
Good luck and remember you are stronger than the condition. Keep living your life.
Thankyou Wero...you have provided lots of great information. I certainly didn't realise that damage could be done silently without symptoms. I must confess to already becoming complacent. I also didn't realise I needed to use a barrier or moisturiser. The last 3 summers here have broken all previous records, and the thought of adding an oily substance to an already uncomfortably hot and sweaty area doesn't sound nice to me. There sure seems a lot to get your head around with LS
Skin is supposed to be dry. So not "right after" shower for the clobetasol. It is a steroid so it is not supposed to be prescribed for long term use.... even though women say they have used it for years. I prefer Nystatin Triamcinolone Acetonide for itch. Soon. I live in Fl. So hot and sweaty is the life pretty much. I am able to wear pretty much anything. I am having Mona Lisa Touch treatments and that is making a big difference. Structure, skin elasticity and strength has increased, hopefully on the way to normal. I have had 3 out of 6 treatments.
Thankyou so much for your replies and advise. As you can see I have many unanswered questions. Is seems my quest for more knowledge and understanding may result in confusion. I am increasingly beginning to realise that everyone is just trying something that works for them.
The Professionals I have spoken to have all said that it is best to avoid anything at all that may cause flare ups, that I would be best to sell the motorbike, not get too hot and sweaty for long peiods of time (and to shower immediatly afterwards), to shower 1 -2 times a day and more if required, that long hikes were no longer an option. They all said that it was extremely important to make all efforts to avoid flare ups....the less the condition is managed, the greater the chance of cancer. It is just so hard to accept, and the more questions I ask, the more confused I am. For example.....
My doctor, the first to confirm my suspicions, prescribed Betnovate Ointment,1%, To be applied sparingly, once daily, and until I could see a Dermatoligist for more advice. (The pain, itchyness and white patches dissapeared within 3 weeks)
A month after seeing the doctor I saw a Dermatologist who prescribed the Clobetisole Proprionate Ointment .05% but gave very little information and advise, just saying that it should be applied daily and sparingly. She also advised soaking in a bath daily with Condys Crystals.
The actual tub of Clobatol says "Apply sparingly topically under gladwrap for one hour" .
My local chemist said to wait until the area was dry, and long enough after a shower for the skin to cool, applied at night when I'm less active. She said that the Clobetasol Ointment also acts as a barrier ointment, and should not be allowed to soak in too much. She also said that Lichen sclerosus is a "skin condition" and that only the skin needed treatment. She advised against using the Clobetesol Cream as it is designed to soak in, and that having a potent cortisone /steroid soaking into such a sensitive area for the rest of one's life was not recommended.
I've read an article too which indicated that while the .05% Clobatisol Proprionate Ointment is best when first diagnosed to bring the condition under control quickly, but that over time when the condition is managed, the maintenance dose does not need to be so strong.
An article on this website about Clobetasol suggests that the area be "wet but not slippery" It does confirm most of what my chemist suggested.
I think its fair to say that no-one wants to apply such an ointment to anywhere on themself for the rest of their lives. But, if we have to, then why is it so hard to find out the safest and best way to apply such an ointment?
Hello again, this is actually in answer to your later entry but I have put it in the wrong section so added this line rather than re start further down.
You poor thing, it's a mine field and you have probably been left with more confusion than when you started. Everyone has an opinion and no one individual is right or wrong in their ideas. You said yourself it appears that we all just follow what works for us. Even the health professionals do not always give the best advise. When it comes to drug applications, remember some advise from experience and others from education and pharmaceutical knowledge. If you haven't already, then you may benefit greatly from watching an article by Doctor Andrew Goldstein. He has successfully treated over a thousand women with LS and discusses the how, when and why of applying topical steroids. I do not like using them, I am a health professional myself but for me the steroid is less destructive than the LS. I only use it now once or twice a week, very sparingly and a tiny amount. Some women choose to change their lives completely. Personally, although I have had to compromise, I have found ways to continue what I like doing. I know this is not possible for everyone and severity of condition and impact on life are factors in our decisions. Google Doctor Goldstein, I think the item is called "The unspoken pain" You will pick your way through all this and I wish you loads of luck.
Thank you so much Wero. I have found it all very confusing. I too have had great success using the Clobetasol so far; using it sparingly once to twice per week. It's been a few months and I've only noticed improvements so far. I've read many more discussions since beginning this one, and feel I have a slightly better grasp on LS now. I think I'll stick with the Clobetasol, and look for information about decreasing its potency over time. Perhaps I'll experiment by mixing up a small tub of 25% coconut oil with 75% Clobetasol.
And I shall check out Doctor Goldstein right now.
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