L S Woes

Dear Patricia, you might try the Borax...see threads on that.  I have a spray bottle and use it after shower.  Some find relief in a baking soda spitz bath.  I love to play Bridge also.  Good luck to you.

Hi there Paula Im in my 40s and was diagnosed with this awful condition some 5 years ago.  I cant use the strongest steroid as it causes more harm than good so I use Bentnovate more often.  I, like yourself, find I often have to use a donut cushion.  I take it with me out socially and to work and people just assume it is for a back issue so I dont really say.  It helps alot and has even reduced my incidence of getting urine infections which I find are caused by the LS.  I also have Urethral Syndrome caused by it so the cushion for that.  I am sorry you have been so limited by this as you sound a very active lady for being 85.  I was in terrible pain before I discovered what was wrong with me but the steroid has helped and I use coconut oil and Epaderm cream & ointment and Diprobase too.  It sometimes spreads to the top of my legs when I have flare ups.  Stick to the steroid stuff and if that one doesnt work try another until they do.  And continue to go back to your specialist - and if that doesnt work, ask for another.  I find I manage it now to a reasonable degree but do suffer a lot of pain and discomfort.  And the cushion does help ... make sure you regularly apply coconut oil or emollient creams - every single time you use the toilet and that will reduce the burning, well it did for me.  Its a horrendous condition but I believe you can have a life again. 

 

hi patrica, it was quite moving to read your initial post.  You have already got some really inspiring replies, and lots of different things to do and try.

As you state in your last discussion post - " she really doesnt know what to do now " of your Gyn, and of course depending which country you are in, you can ask your doctor / GP to refer you to a different specialist.  A dermatologist for example, or a different, Gyn.  Ask what options there are for getting specialist medical treatment, even if you have to be referred by a GP, if you are in the UK.  Good Luck - I am a LS sufferer too, and we men get it much less severe than you ladies, so, I can't even think of what you have had to experience!

Hi there, there is no magic wand, unfortunately. 

All the symptoms you describe are the symptoms that most of the women that post on here have had to endure at some point.  The steroid cream is only a small part of the treatment as Sugar is the main cause of the most distressing symptoms of Lichen Sclerosus. 

If you can make a determined effort to cut out all sugars for a few weeks I am certain you will see a HUGE improvement.  It is difficult at first, and you will need to take into account some carbohydrates (which turn into sugar) Once you are on top of things you can then introduce some sugars back into your diet, but initially, you really do need to be super strong. 

If after a month of cutting out sugar you have no improvement at all then I would suggest you look at Gluten.  For some women cutting out Gluten is like BINGO!! and that may be your problem. 

Do not cut out both sugar and gluten at the same time as you will not know what is causing you these horrible problems.

Keep us posted on how you are getting on.

I mainly have problems with burning, and for the first four months had difficulty sitting and walking as that made things swell and burn worse. I’m  42 with three children so those months of being unable to sit all day or walk were extremely rough. Things are improving and i’m able to be almost normal in my daily activities. I’ve used a steroid cream consistently, and have been able to go from using it twice a day to once a day. I cut out all added sugar and sugary foods from my diet, which has also helped a great deal. Using some kind of oil externally to prevent friction has been very helpful, as has using A&D ointment during my period to keep the moisture off my skin.  I’ve also purchased a stadium cushion that I keep in my car in case I go somewhere where the seats are hard. Don’t lose hope. It may take a while but eventually odds are good that you will be able to be out and about again. 

Dear Patricia 87844, 

Nancy here. How are you doing? I've thought of you alot.. and feel for anyone caught in "cabin fever" as we say in the U.S.   I'm 72 and have been working diligently on solving this LS. I do hope you found the list of nutritional supplements I made and posted here some months ago that I found associated with autoimmune nutritional deficiencies.   I'll repost soon with m latest finishing touches. I am so grateful for the hints and suggestions given in this forum to develop the protocol.  It's working for me. I hope others as well.    

I know very well how you feel....I was so uncomfortable sitting down on hard surfaces, the weight of the upper body putting pressure on the genital area, I used to lay down a lot whenever could, this was at the begging of my LS experience. You will get better with treatment, please hold on to that hope. Yes, I know what you mean about not having a social life...you need to sit down a lot, hard to explain and get into a lot of details. Use cushions, lots of them and try to find a position you feel comfortable with. It will pass slowly.....