Posted , 14 users are following.
I am absolutely pulling my hair out. This LS is doing me in. Seriously thinking about sleeping when I can during the day and living as best I can during the night's. I'm 61 and my life is ruined. Does anyone else cry all day.
1 like, 27 replies
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Wee_Dugie Aitch4
Posted
Hello Aitch4, I am a male who has suffered LS for about 8 years. I have found this forum to be wonderful at putting forward all kinds of different ways that ladies have found has actually worked for them. So, no doubt, if you check out some of the previous forum discussions you will gain some great advice! No doubt other women will reply to you directly about the things to try, dietary things to eliminate and things to add, and the kinds of medical specialists you can try to see - on your on discussion forum here.
*What I want to raise, and often gets forgotten is that you need to find how to be 'skin friendly' to your own skin. The skin is the largest organ of the body, and when things go awry and you end up with LS { you could have other skin conditions too, potentially } you have to put radical changes in place to make your skin, once again, a comfortable place in which to be.
So, you need to return your body to as near to a natural state as possible. Think about ALL the chemicals that regularly are put on you skin: from soaps, shower gels, skin lotion, perfumes, anti-antiperspirant, and, even the soap powder you use to wash your clothes. What you will have is an accumulative effect, different things from diet, things that are in direct contact with the skin COULD all have added together to create what you have now.
If you shower regularly, change to a sensitive skin soap such as Dove. NEVER wash your hair in the shower as most of the shampoo will get on your skin too.
For washing powder, start with washing ALL of your clothes with natural soap flakes. Most supermarkets stock different, or their own brands in LIQUID form - this means you can put it in the washing machine and do your clothes as you normally would. NEVER, add fabric conditioners or other such additives, or pre-wash treatments. IF you get to the stage where everything gets under control with your LS and you want to go back to a powder, ONLY try powders specifically for sensitive, or skin allergies - the most common one is Fairy powder.
In terms of all the other things you place on your skin, try eliminating as many as possible - REMEMBER, if it is not pure natural water, there could be a really bad chemical lurking in the mix that simply your skin cannot tolerate any longer. Wishing you all the best ... and do follow all the forums on here as you will pick up advice that will radically change what it is you are experiencing now ..... !
Aitch4 Wee_Dugie
Posted
sarb73328 Aitch4
Posted
Hi Aitch4, I am 64 and using eperderm to wash, castor oil plus lavender oil to moisturise or emuaid or coconut oil or castor oil plus zinc (nappy cream) and swab with Borax solution. I use betnovate which helped unfuse part of an area, now using it for maintenance every four weeks as GP advised.
I am currently in remission, so not suffering greatly but I keep up the routine of moisturising as I think that's vital.
So take heart, remission does happen and all these creams and potions do help.
Good luck.
Aitch4 sarb73328
Posted
Thank you sarb I'm sure you're 100% correct having suffered badly yourself.You've been a great help.
Deerfieldee Aitch4
Posted
Hi, a friend recommended borax bathes and sprays of borax and water after using the bathroom , as being very helpful.
I have also come across an article that states cutting out/ reducing OXILATES as helping put LS into remission/ "cure" it...I still exploring this. Has anyone else out there read this or tried going on a Low Oxilate diet?
Please keep us posted! I too, am hoping to read and learn more from others who have dealt with this
phyllis98203 Aitch4
Posted
I am the same Aitch4 , I have recently been diagnosed with LS and it's driving me to distraction ,I have no itching or white spots but the constant burning is making me depressed . I use the Betnovate and E45 but it doesn't take the burning away, I too would gladly welcome any advice on how to cope with LS .
Guppy007 phyllis98203
Posted
Hi Phyllis, burning is the only symptom of LS that I have not experienced, so I am glad of that.
Take a look at the older threads and look for the topic 'an experiment with borax' because many women swear by it.
Wee_Dugie phyllis98203
Posted
Do read my main response to Aitch4 in this discussion forum for my other tips .... Also, with any steroidal you try, make sure to work it into the skin. I recommend applying in each area required for 2 - 3 minutes, then do a more general massage action for another 2 or 3 minutes in the locations where LS exists. This is best achieved when you body is warm, such as when you get out of bed, obviously, even better once you have had a warm shower .....
phyllis98203 Wee_Dugie
Posted
Wee_Dugie phyllis98203
Posted
Hi phyllis, Sudocrem still contains lanolin and paraffin wax: try a test period where you are only using the steroid ointment - I would suggest a full week, or even 2 to see if the Betnovate can do the trick on its own.
Who diagnosed your LS? Do you still have contact with a specialist, such as a dermatologist, or vulval conditions specialist, perhaps? You may need to try different strengths of steroidal to find the one that works best for you. As every LS condition is individual to that person the only choice you may have is to continue to use a steroidal long-term, irrespective of safety issues.
However, as I mentioned in my previous reply to you, many women on other discussions on this site say they have managed to reduce their steroidal use, some even say they have stopped using the steroid altogether. The only way to see if this is achievable for you is to try different things that potentially could replace the impact of the steroid.
You need to give whatever it is you are trying sufficient time to see if it works for you. Make sure you have a steroidal to fall back on if the thing you try does not, or, stops working for you.
Don't forget the most important issue is diet - so, the biggest change you can implement for the severity of your LS is through a radical change .....
phyllis98203 Wee_Dugie
Posted
Thank you for all your suggestions and invaluable help, I see my gynaecologist every 6 weeks at the moment. I will certainly try just using the steroid cream and see if there's an improvement, I have stopped using sugar and have been using a Dermal wash which seems to have helped a little, thanks again for your help , it's good to know I'm not suffering this on my own.
viv15674 Aitch4
Posted
I agree with those who have recommended cutting out sugar and processed foods. I don't have much of a problem with dairy or gluten, but cutting out sugar has made a big difference for me. I still eat organic sweets made with natural sugars, but avoid processed sugars as much as possible.
I must emphasize that initially, the dermovate/clobetasol ointment is very important for healing what damage has already been done and helping you to go into remission. Two or three weeks of using it twice a day and then cutting back to a couple of times a week until you can go to an as-needed basis, in addition to other tips provided (no sugar, no underpants at night, oils for relief, 100% cotton undies only, no soap cleansers) should help enormously.
I will also say that regular exercise is important, because it helps to manage stress, which is a major factor in any immune disorder.
Your life is not over. It's a horrible condition, but manageable. I'm 38 and I've been living with this for around 20 years. I've had long periods of remission and long periods of symptomatic pain and itching. My symptomatic periods have almost always been due to my neglecting to use the clobetasol/dermovate and not paying attention to my diet, and they always clear up once I'm back on board with both.
Best of luck.