LICHEN SCLEROSIS - GOOD NEWS STORIES

Hi Roo as I said in my first letter I was diag with LS a couple of months ago after nearly a year of backwards and forwrds to Dr.Then ref

to a gyn:who prescribed bentnovate for 2 wks then onto dermovate and

to use aqueos cream to wash down below with.At first i used the aqueos

every time I went to the loo.I used the old fashioned nappy lines to apply it and gently rinse it off with.I havent been itchy at all since starting this.but I still no its there!!!I have also found I can use infacare in by bath and to shower with now.I have it in my anus too so a put some aqueos cream there aswell and it really has helped.Iam 57 and am going through the menopuase snd my Dr said because my oestrogen is very low this sometime causes this problem.I can only I feel and know what all LS sufferers are going through,but you must remeber there MUST be a break through with this soon and above all stay POSITIVE GUYS.......

kind Regards to all

D

I've been really pleased with the effect that the dermovate has had on me. I had a lot of fusion but was told to use the dermovate twice a day for a month then once a day for a month. It's now 3 months since I started and I can see huge improvements. The labia are much better ( nearly back to normal) and the white patches have nearly all gone. However the thickening of the skin has spread to the top of my legs but that's not so bad as in the vulval area. I have to use the amount of dermovate that fits from the fingertip to the first fold in the finger each time. I think I've had excellent advice from my dermatologist so far.

After 1 year of symptons of itching, I had a biopsy done and LS was the diagnosis. Clobetasol (in canada) was prescribed and I used 2x per day for 3 months. The labia was still always inflame and if I tried to cut down to 1x a day, I would get lesions. So here is what I done. I use clob in the morning after my shower (no soap down there). After a couple of hours, I apply some vaseline or cold pressed extra virgin olive oil to keep the area moist. In the evening, I have a sitz bath just to refresh the area with warm water only. I then apply some Premarin cream (prescription estrogen cream) on the outer bits only NOT in the vagina. Apparently this rebuilds the tissue. In the morning things look really good. A pea size amount rubbed all over. I am on my second week of this system and things are looking up and I am feeling better with no more outbreaks. Outbreaks will occasionally happen but will deal with them as they come.

Hi, I was diagnosed with LS about 2 1/2 years ago aged 34 and it was a shock and I did feel a bit low about it and I have done on and off. Then I just stopped thinking about it. I would put on the dermovate when it was bad and that was as much as would think about it. Recently though the itch came back with a vengance!! and the good old dermovate didn't seem to be working (I also had felt a lump) so I went back to my GP who refered me back to gynae. Whilst waiting the age it takes to get an appointment I took matters into my own hands and saw a homeopath, I have seen homeopaths before for other things with good results. Since Jan I have been taking a remedy that suits me (everyone is different) I stopped using the dermovate so I would know if the remedy was making the difference. The itch has gradually gone, I still get a bit from time to time and I know that LS is remmisive but I really believe that my positive thought, the fact I don't dwell and the homeopathy are making a difference! When I got my appointment I actually saw the consultant this time !!!! He was really good I told him about my concerns over using a strong steroid long term and he agreed that it wasn't ideal, and has given me a much weaker one although he did think that that my case wasn't that bad and it seemed inactive. ( the lump turned out to be an unrelated harmless cyst that could go away on it's own). He agreed that it could go into permanent remission. And I am sticking with that ! I told my homeopath that I wanted it to go forever and I am determined it will. I also don't use any chemicals on my body. I try to use only natural cosmetics, soap, shampoo and I haven't touched deoderant for about 10 years (that is poison!!) I think it is important that you treat your skin well as it is a skin condition!

Just don't dwell and avoid chemicals thats my advice!!

Hi guys,

really pleased to hear some other positive stories! I was diagnosed about a year ago, just after i started university and was completely horrified and terrified. My mum came up to Leeds where i am at uni and came to the doctors with me. Doctor was really nice and calmed me down a lot. Gave me betnovate and aqueous and told me not to worry too much, betnovate started to work after about a month and now i only have to use it if it flares up. i live my life completely normally, (with the exception of having to be a bit more careful during sex) and sometimes having to give up on it if it hurts, but that doesn't bother me too much.

i hope all of you can be positive too and try to live your lives as normal!!

Natasha

Hello all I was just informed after 29 years (I am 29 and have had this since 6 months of age) that they now believe this is what I have. Sex does not hurt though one lip and vulva have been swollen and with great scar tissue for most of my life now (all that I can remember). Can anyone give me OTC ways to treat this, I am also in the USA.

I have recently been diagnosed with LS and have found neither GP I visit has anynunderstandingnof the condition I do visit a gynaecologist twice yearly as I also have a collapsed bladder and he diagnosed the LS but gave no info about it I had to look up online the info I found on the NHS site was quite helpfull I.e before urinating wipe vagina

with Vaseline and always use aqueous for washing and somewhere I read to use Sudocream very effective if not a bit messy and wear no knickers I do all these things and wash with a baby soft sponge three times daily and find this leaves me comfortable

I also have an under active thyroid and Vitiligo

I have used dermovate but appear to be allergic to it

I also get very sore inner tops of my legs and an uncomfortable anus

I use the Sudocream for this also

I also find Virgin olive oil is comforting as is Vaseline but the Vaseline tends to mark clothing

Lucklilynimdo,not suffer from itching

But I do suffer from disturb sleep. Does anyone else suffer from this problem?

I am 75 years of age but feel good generally

But I do suffer from disturbed sleep

Today my L S started to itch

Not a happy bunny about this

Where exactly do you apply the dermovate cream and how much do you apply

Janette

hi everyone . I am so sorry to hear about the misery of LS I was diagnosed by a gynae specialist a few weeks ago at the hospital in the uk , , I had been sore down below and had painful sex quite a bit , I assumed this was a thrush problem , or something worse ,

tbh I was quite relieved when the specialist had put a name to it and explained to me that they didn't know what caused it but they couldn't cure it just make it manageable with steroid cream and oestrogen cream , my gp had prescribed dermovate cream , I didn't feel a vast improvement after using it ,

the specialist said I had white and pink skin and the steroid cream wa good at thinning out the thicker parts but I needed oestrogen cream as well , , use them alternate days

watch the bio washing powders , cotton underwear etc ,

that must have been three weeks go , he said he would be writing to my g.p ,

I had only got a little bit of dermovate cream left from when saw gp ,I have waited for word from my g.p to say she has had letter and prescribe the medication I need but so far nothing , I don't know how long these referral letters take , but I rang my drs surgery twice this week and receptionist just said nothing has arrived yet and hey cant do anything until they get the letter , I was getting quite stressed as want to start treatment properly before things get any worse ,

I was told on fri that the receptionist was going to chase up my referral letter for me , I expected a call back about prescription , but nothing ! yet I told them I was almost out of cream to use ,

I really feel bad now that I have been sent to specialist diagnosed and now cant get the medication I need, now I have looked on the internet for info and feel very scared having seen the pictures and stories of what can happen if left unchecked ,

last night I thought I would check down there and can see my inner labia are now non existent , this is really scary everythings very red and inflamed tho not itchy and I am getting a really sore area at top of bottom crack , I presume this is the same thing,

my worst nightmare now would be being unable to have sex due to vaginal narrowing , I have heard so much about this happening , tho I feel better after reading on here about few that have improved since ,

really going to the specialist has just given me a name for it and no solution as I am not being prescribed what I need to relieve it , I now feel I have been left ,

I really feel very down about this at the moment , and I hope everyone else with this terrible condition gets better , I had been trying to stick to the candida diet before this happened as could see I had lot of conditions from eating certain foods , vinegar , bread mamite yeast , sugar , and from what others have said I think this is related to a fungal cause , something else they cant test for so they pretend it doesn't exist , and even harder to get treated for , more research into this is needed ,

Hello everyone,

I would like to share my story and the things I've done to help this condition get better. First and foremost I am 21 yrs old and I was just diagnosed with lichen sclerosis. My symptoms began 3 months ago... When I began to feel this burning and painful sensation right after having sexual intercourse with my boyfriend & was having vaginal discharge. So I decided to go to my doctor and get tested for STDs when I went everything came back positive therefore I thought it might of been a yeast infection. So that's wat I got treated for. But then every time before my period I would get this discomfort feeling no pain just a weird feeling anytime I would wipe my self after urinating n while in the shower. So I went back to my doctor at this point my doctor didn't know what it was so he sent me to a specialist. People PLENTY of doctors mistreat their patients not knowing about this condition!!! But while I waited for my appointment it was getting worst it started to feel dry n itchy around my vulva. Finally I went to my app n I was diagnosed with this disease. Of course I was scared worried hurt specially doing research n seeing that there is no cure. N e ways my doctor prescribed me clobetasol (temovate) n told me to apply once a day at bed time. For a whole 2 weeks I did as he said n I seen little signs of improvement so I did my research to help find something that would make me feel better during the day. I called my doctor n told him it wasn't getting better so he suggested I kept using it for a whole month. But I tried my own home remedies and I finally got to feel sooo much better no more itching and no more painful sex! I read that a lot of things affect thus disease n makes it appear since it is an autoimmune disease. So I stopped eating greasy foods no soda and I began to take vitamin d with antioxidants and vitamin b complex with vitamin c... And during the day I apply coconut oil on the outside of my vulva and inner lips n at night apply my steroid cream and I've been doing just fine. Hope this can help some of you ladies!!! Because I kno this can be a very stressful situation but don't give up there are by farthest worst diseases and things out there you just have to learn how to manage this and continue living ur lives! Oh and for those asking how much to apply of the cream only a thin layer so maybe a drop on ur finger and spread evenly until skin looks oily but that u can't see the actual cream. It is ok to apply on inner lips just not inside! Again hope this helps! Gudluck!

I know its been a year since you posted your story but I do hope that you are doing much better now.  I have some positive information about LS.  I offer you hope today because LS can be controlled to the point that you can and will live a happy and normal life again!  After being under the care of a great dermatologist that specialises in vuvlar diseases she has helped me to heal completely.  My last visit she stated that if she had not seen the LS on me a year ago she would now not be able to tell I ever had it.  Now it doesn't mean that I'm not responsible for keeping up the good work of following all her directions.  For the rest of my life I will continue to use only a very very tiny amount of the temovate ointment 3 times weekly in the places the LS was on my vuvlar to keep it from returning again.  I say tiny because it is very potent ointment so a lot of people mess up using way to much of it.  So I say to you, that things can get better with the help of a good doctor who knows how to treat LS.  Again things will get better and I hope that you are doing much better now.  I would love to hear back from you!  Have a great day!