Lichen sclerosis any advice?

Beth You have had a horrid time.

Why are you crying - because of pain or the changes to your anatomy, or fear for the future? Go to you GP and talk through the things that are making you cry, you may need counselling or a short burst of antidepressants or pain relief.

Stress - emotional disharmony I find will make me have a flare up - so if you can find a way to reduce that aspect you MAY find your flare up can lessen.

Have a look at the various topics n this site around the subject and see if there are any suggestions that you can take on board

You may find that by having thyroid supplements will help too -

Are you in the US? Treatments do seem to differ slightly according the country

What dosage of steroid are you on - you appear to be taking 2 types of eostragen creams as a HRT is that right? Have a look at the various websites written by dermatologists that may give you an idea of the rationale behind the treatments  BUT DO NOT LOOK AT ANY PHOTOGRAPHS....they are for the professionals and are THE MOST extreme, and while you may be toward  the end of the spectrum  of your gynae's experience you may not be all that bad in real terms, so do not worry. Again look at Morrells input into worry on another discussion stream

Most of us are using a moisturising cream, some use a vaseleine based ointment as a barrier again urine being on the skin surface, and then a pea sized amount of STRONG steroid ointment or cream  daily during a flare up. Remission just means that the condition isnt progressing and is as my gynae said - quiescent or less active.

Do you have other auto immune conditions?

Keep your pecker up as we say in the UK, try and relax and try to smile - if you can - get as much sleep as you can; and some on this site go down the alternative route - eating healthy diets or food restricting diets - check these sites out they may help you.

Good luck and try and relax and wipe away those tears- in my experience the only thing that crying does in the long run is togive you red puffy eyes a sore throat and a blocked runny nose....AND keeps people away from you because the above is not a Good Look!

There is  a lot of kindness on this site, try and be brave

SueDM

 

Hi Beth,

Sweating make it worse for sure! Sometimes it seems we're sort of allergic to whatever's in our sweat. And same goes for other effluent. I believe that's why I get 'ring of fire' after eating chocolate.

As for the LS calming once your thyroid meds do their job, hmm, more like both conditions are auto-immune, so if the root cause were solvable, then both would improve. Maybe. My psoriasis is 100% clear, but the LS is not.

re thyroid.  I have thyroid problems which are stable with medication but I still have LS. However, one curious thing......my thyroid levels had been stable at the same dose for over ten years, so much so that I was only getting bloodwork done once a year.  My LS kicked off at menopause, about a year after my last period, and in the same year my thyroid levels plummeted so that I ended up on almost twice the level of meds as before......my Gp suggested that it was the drop in oestrogens that precipated both.  He's not suggesting that the menopause caused the LS but I had a genetic predisposition towards it (my mother had similar problems) and the hormone changes were enough to kick start it as well as affecting the thyroid levels. Interesting....we just don't know enough about it yet.

On a very practical level, low thyroid can cause constipation, and strainig can cause tearing, so getting your thyroid sorted can only help!

This makes perfect sense. I have major problems with constipation which only adds to all of my LS problems. Perhaps the constipation will get better once I see my gp about my low thyroid this week.

Hi Beth - have you considered what you are wearing while working out?

May be  the friction is a problem and some have mentioned that horse riding is now a memory because of the LS...Lycra? sweat making gear I think! Cycling may be an issue- Remember no nice smilly chemicals any where near the undercarriage...As to the constipation don't overdo the laxatives - go for high fibre food stuffs instead you don't want faecal fluid to burn your nether regions either!

I was told that a sudden drop in hormone levels  which in my case was combined with stress may have started my LS - and I was in Australia at the time so hot weather  and putting on weight and tight trousers would NOT have helped either. I just try and live a normal life  ignore - or attempt to ignore stressful circumstances eat sensibly reduce the alcohol intake and try and smile a lot. ( with the difficult recent few years before the diagnosis the truism of laugh and the world is with you. Cry and....... where is everyone? shows the old sayings have a lot in them) Keep smiling

SueDM

....Whoops  Smelly Chemicals  not smilly!

SueDM

I was constantly constipated as a kid, probably due to a low fibre diet. When I was out of my family home I became a vegetarian for awhile, but even when I started cooking meat I was always conscious of eating plenty of vegetables, fruit and whole grains. I believe I had LS as a girl and the real problems showed themselves with sex. I was probably already somewhat atrophied.

I recall doing the Jane Fonda aerobics video in the late eighties. I'd be doing jumping jacks and suddenly feel my perineum tear. What a drag.

Hi Morrell, I wonder whether how much oil we have in our diets has any relationship to our skin elastisity? Being fair my skin tends to be dry to normal(on occasion)

Trying to get my weight back to a normal level - for me - I reduce the fat content of my diet, and also I am very senitive to external factors - sun, bites  and chemicals for example.

I get anxious when people say they are constipated because the tendency to to go straight to the laxatives with often dire results - hence suggesting high fibre diet, loads of water- and of course exercise, which for most normal people should "get one going!"

As I understand it our skin sort of manufactures oil at its own pace. Some people are oil machines with hair that gets greasy in one day. I have super dry skin and scalp, so a psoriasis flare acts quickly. We ate meat and potatoes and white bread, overcooked (lots of canned) veggies and friuit and a LOT of white flour/white sugar baked desserts. I believe spending your first couple of decades constipated sets up leaky gut and its attendant auto-immune disorders. I don't put much stock in fancy diets and supplements fixing that broken system just like that.

To Morrell and Suedm, 

I am reading your posts with interest.  Great points both of you make. I was once informed that a dry skin can also be because we may be dehydrated.  I was advised to drink less diuretics and more water to rehydrate the skin which will then be more elastic.  I believe we all need fat in our diets too, not only for the skin but it is essential to keep our nerve endings healthy.  In general a balanced diet is not restricting everything but moderation and plenty of the right things.  Yes we are all different and our bodies all process things differently.

Right you are, Chrisy. Those low fat diets from the eighties have been proven unhealthy. It's arguably their fault for leading people to believe they could eat all the pasta they want as long as they eat no fat. What a thing to do to your colon! And it may explain a lot of obesity.

Hi Chrisy, my reduced fat diet really means I have given up having toast for breakfast- I lather it with butter and spreads., and reduce the amount of cheese I eat......not good for the hips.

I tend to cook the old fashioned way, I dont like the taste of most ready meals, rarely fry stuff and never deep fry foods - I did have an irritable bowel in my 40's and had a bout of diverticulitis 10 years ago - OUCH - so high fibre vegetables feature in my diet when necessary , and in the summer salads are wonderful. I drink stacks of water - with a bit of fizz in them from a soda cylinder

Sounds fine to me .