Not doing well need support

Hello there don't get too disheartened,L S is a ghastly situation to be in.I have had this for 5 months am on steroid s

after reading threads from so many ladies am now using emuaidmax to calm the soreness am seeing a dermatologist next week,not very hopeful of any new info.If I can keep it under control its as much as I can hope for

Hi Janet, I have just been diagnosed almost three weeks ago. I have been

suffering for 18 months with misdiagnosis. My GP was treating me for post

menopausal vaginal atrophy which has left me with white shrunken skin

at the top part of my outer lips. Thank goodness I was referred to gynecologist

that took one look and knew it was LS. I was in a terrible state emotionally

and physically drained with the burning, stinging and pain. Crying constantly.

I was given dermovate twice a day for two weeks, then once a day for two weeks

but I have had to continue with twice a day every other day. I understand about

being scared. I could not see any future and how it was all going to end. I have not

had a biopsy yet. I was advice to use Vase line after every pee. Have you seen

a gynecologist yet? You are not going to die and in time it will improve. I am 64 also

and was terrified sex was over for me. It has since LS started eighteen months ago.

This illness can clear in time but flare ups are likely. Thankfully the ladies on this forum

are very helpful. I am sure others will help you out that have had the illness longer

than me. But you are not alone. Hope you will feel a bit calmer and please do

not worry. I have gained more confidence that things can improve. Keep in touch,

post when you need.

Hi Janet, I am so sorry to hear what you are going through. You do not have to suffer like this. It is good that you are going to see your gyn again soon and I hope they can help, but if you are not satisfied seek out other specialists with expertise in LS. A dermatologist might be able to help you further as LS is a little unique in that the skin and the genitals are implicated. The doctor who finally diagnosed me said that even an experienced gynocologist could examine me and not realise as they are not all aware of it. Be persistant in your pursuit for medical help as I've unfortunately learned you absolutely must be your own advocate. Look after yourself, consider trying counselling to support yourself emotionally as it can be a lot to bear and having an outlet for your thoughts and feelings is important. I am sure there will be many other kind people here who can offer some advice too. There's always someone here if you need to talk Xx

Hi Janet - sorry to hear that you are having all these issues at once - you are overloaded. I am early 60's and had LS since 2009 and also had bowel issues. LS loves stress try having a relaxing bath with salt- it won't sting I promise!

After you go to the loo try Andy spritz the area with a water/salt or water/bi carb solution and pat dry. I used clobetesol for over 5 years. I have not used it for over a year now.

i also use vitamin E and paw paw ointment. I cut out sugar (still have a glass or red though 😊 really changed my diet.

this week my gyno said I was in remission for the first time. It can happen.

good luck and try to avoid stressing x

Hello Janet, I I have had symptoms for about eight years and was misdiagnosed with postmenopausal vaginal atrophy and was diagnosed with LS three weeks ago after a biopsy. I wanted to give you some encouragement regarding sex. I wouldn't be concerned with what you look like down there as you can always find lingerie with strategic openings. Always remember you're only as sexy as you feel no matter what your physical conditions or limitations are. There are people paralyzed from the waist down or women who have had a double mastectomies that enjoy rich sexual experiences. It may take some creativity but the key is being confident and feeling sexy. If you can please your partner and your partner can find ways to please you that's all that matters. Take care and remember we are all on this journey together.

Hi Janet,

?It is a lot to take in all at once.  A person goes through a deep valley at first.  After I had learned a bit more from the people on this forum I gradually climbed out of my deep hole. 

?There are a couple of things that most likely give some relief -  try to relax ( easier said than done, I know)  But know that stress triggers LS.  Next - try to cut out most sugar.  LS too often thrives on sweets.  Check your diet in general. ( I myself am gluten free as well and use limited dairy, no caffein and no alcohol)  Eating fresh produce makes a difference as well.  Good old home cooking. 

?I've benefitted from baking soda baths (1/3 cup per bath), at present Borax baths (1/6 cup per bath).  Especially since you are experiencing it further than just down below, this may be very helpful to calm things down.  Alternative may be Epsom Salt baths and then drink lots of water all day. 

?Wishing you well.

 

Lichen sclerosis hates acid like urine and feacal matter. Make sure after visiting the toilet you thoroughly clean and apply Epaderm, sudocrem, or similar barrier type cream like nappy rash cream. Then if you leak a little you should be protected from the sting.

My dear Janet!  You seem to have a particularly virulent attack of lichen sclerosus. Try not to worry too much ---I know it's very easy to say!  If you have been told to use a steroid cream --- like Clobetesol, do use it . I am using this every other day at the moment .the days in between I use a thick Vaseline like emollient. After about two weeks the itching and soreness were mostly gone. I still keep on using the steroid cream, in the hope that it will stop the attack,as I have heard that this horrible disease has some remissions!  Hope that maybe some bits of my story may help. I am 65 years old , so thankfully the sex part is not too important as my clitoris is completely fused over so I can't feel much anyway!  Love Jackie

PLEASE SEE A DERMATOLOGIST!!

Ive been to enough gynos to know they are not well versed on skin Disorders..or diseases of the vulva. Its a skin Issue.

Ive had GREAT improvement with my dermatologist! Im on Protopic and you will notice a lot of people here on this dorum making the sme conclusion and are happier when they crossed over to the "Skin experts!" Dermatologists seem tohave a lot more options and wider knowledge of recognizing the wide variety of symptoms.

Hi Janet, 

I have had LS and LP for a couple of years.  I have found that diet has no effect on my LS whatsoever but we are all different.  The only three things I can say make a difference are 1. Use clobetasol liberally when you have a flare up; 2. Use Vaseline on the areas which rub together ; 3. Keep the areas clean and urine-free.  For me, everything else is anecdotal.

Janet, I feel for you.  I would encourage you to go to a dermatologist if possible.  I have the same pattern/symptoms as you do (mostly anal area, and terrible rash and open sores on my butt cheeks, plus the added problem of up my butt crack).  I went to a dermatologist today and she took a sample, looked under a microscope and diagnosed it as a serious yeast infection.  And here I was suffering with it, thinking it was LS-related.  I still have LS (obviously), but this awful stuff around my anal/buttcheek area is yeast.  Anyway, she gave me some very high-powered cream to apply (a cream used for burn victims, that's how deep these open sores are) plus an oral pill.  I am really hoping this will work.  I just wanted to share this with you - you may want to ask your gyno or dermatologist about yeast being a possibility in your case too.  I hope you feel better soon.

 

PLEASE READ THIS!  My apologies for how long I've been absent from posting, two months?   I went back to my gyno  right after I first posted, who examined me and sent me to a dermatologist.  She said she was not sure I had LS because my vulva was really clearing up and the outbreak was more on my upper inner legs & butt.  I was referred to a group of dermatologists and I walked in to see I was going to be examined by a man.  Wasn't expecting that, was very embarrassed but wanted to get this done.  He examined me for awhile, took a scraping from my upper legs, butt and general groin area.  He looked at it under a microscope and said "this is a fungus"..He gave me a prescription for econazole nitrate cream.  I used it twice a day for a month, then once a day.  I am completely healed.  No more itching, open sores, skin looking like it's rotting away.  The skin in the entire area is still red from scars.  The discoloring is going away and I was told it would take awhile, but it is definitely changing every week.  I lived for eight months thinking I had LS, treating it and watching it get worse and worse.  I didn't get a biopsy because I was AFRAID.  Any of you who have not had a biopsy, GET IT DONE.  Have the biopsy right away.  The dermatologist told me the only way you can really know that you have LS is by having a biopsy.  My gyno wanted me to have a biopsy right away.  It's my own fault I didn't.  I have read many discussions on here, I wish all of you would have the same experience as me.  I thank God for this website.  All I can say is get a biopsy and find out what you have.  It might be good news.  

Jane, I really think you should be looked at by by  dermatologist or get it tested. i thought LS was fairly localized. I have tried everything, including Chlorbetasol.  A uro-gynocologist told me thast too much steroid (cholob) actually worsens  it. l just had my second Mona Lisa laser treatment and have noticed an improvement  in my VA (Plumping and healing of and for 1st time In 7 years LS is practicaslly gone