LS in Perineum too much Steroid?

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Hi I am new to the forum and would appreciate some help from ladies that have LS in perineum area.  Mine is slight red paper like cut that looks white and spreads up left side of vulva.  My Labia Minora are completely absorbed now. My concern is that am I thinning out this perineum area too much. I am only used Steroid once a day for 4 weeks. Area now looks very thin paper like. I only use a very small amount.  I know we need to continue ue but I don't want to cause of their issues.  Can someone help please I am worried. 

0 likes, 19 replies

19 Replies

  • Posted

    Hallo Jess...I'm not experienced with steroid use myself....I do have a slight degree of white in the perineum area plus areas on labia minoras. I do not have  soreness or itching. I have been applying once daily for 3 weeks but I am not sure what it is doing as the white areas don't look any different. If I had any worrying reactions with the steroid use I would make an appointment with my carer (doctor gyneocologist dermatologist etc.) to see what is recommended.

    It could be you need to apply less frequently or use a lower potent steroid!

    Hopefully someone with more steroid experience will reply with more help for you.

  • Posted

    Hi Jess,

    I'm no expert obviously but having listened to a lecture by leading expert on LS he kept emphasising that LS CAUSES skin THICKENING and that there is too much scaremongering about use of steroids by pharmacists and gp's. It does NOT apply when you have LS apparently. Use EXACTLY as prescribed , usually every day for a month, then every other for a month, then 3 times a week for a month followed by once or twice a week to maintain its usual. Remember to rub in for 90 seconds as only about 30/40%of the cream is absorbed in that area anyway and it has to penetrate to the deep layers of skin that are inflamed.

    I'm exactly like you have had many tears in that area and Labia Minora have gone, clitoris and urethra are getting covered too. In the early stages i was a bit cavalier with not looking and the area with a mirror and seeing how bad it was before i stayed applying dailycream again. I only used to look when the itching would start up. I think i may have reduced damage if i had. I won't make that mistake again. I check every day.

    I don't know if you wash after you have had a wee but i found just diluting or washing away the urine with water on some toilet paper has helped my perinium area. LS sufferers tend to be super sensitive to their own urine.

    Hope this helps Jess. You are not alone, so many good people here to help all they can. I'm new to this site too and I've learned loads and had great support.

  • Posted

    Hi Jess

    I have had LS of amongst other areas, anus and vulva, for nearly 2 years and I think I have had really good treatment and advice from my gynaecologist as I am controlling this condition really well (at the moment!).  Ignore all the concerns about skin thinning as doctors disagree about this in any event.  When first diagnosed I applied the ointment twice a day for several weeks until the itch receded.  I now apply it once a day, twice a week to control LS.  I have been told to continue to do this even if I am not having any symptoms.  From time to time a have a small flare-up but, after applying the ointment for a day or 2, I'm fine.  The name lichen sclerosus/sclerosis comes from the shiny white lichen-like patches which the condition leaves - this is beautifully illustrated by the patches on my back which look just like lichen on trees, like silvery-white paper.  It has nothing to do with fungus and the white patches [u]won't[/u] disappear.  The red patches are new inflammations.  I have 3-monthly check ups with the gynae to make sure there is nothing sinister happening.  My gynae is very clear that I must keep using the clobetasol to prevent major flare-ups and that I must use my own judgement as to when to increase and then decrease application.  As I said, it is working well for me.

  • Posted

    Jess, with my LS changing so much and to fast. I was thinning out and my flares ups were constant and very frequent. I stop using steroids altogether because of thinning and changes this area. I also got a second opinion from a different doctor who advised me to stop using the clobetasol steroid. I still use my estrace hormone cream 3 times a week. It's still my personal choice not to use those steroids cause I was on them for so long.. I also had that little paper cuts that you described and red spots but today it's been almost 2 months since I stopped using steroid and the cuts are gine ,the red spots are gone and I just have the white spots that do still it itch me occasionally.
    • Posted

      Hi pammy, I don't have a lot of confidence that a steroid helps in anything other than dampening inflammation. I am trying other means of avoiding inflammation and fingers crossed I am winning at the monent. I don't like the thought of dependency on steroids and will only continue with them if all else fails. LS has not caused any thickening for me even though I do have white areas on my minora labias and to a lesser degree on my perinium. I have been told by my doctor that steroid treatment will not reverse the cell changes in the white patches. I believe hormone treatment would be the requirements for improvements in genital tissue. If anything my minora labias are thinner and smaller than before developing LS. I am just hoping the cell changes don't decrease them any further. On first examining me the consultant said ..three things in my favour.. 1) no ulcers..2) no fusing..3) no thickening. I'm hoping a change in diet and lifestyle will keep the need for a steroid at bay. I think the many case stories prove that not everyone is affected in the same way and as we have different functioning bodies surely our needs must be different. One shoe does not fit all. I wish there was a set regime for all with LS as even advise on steroid use is contradictory. My consultant said use when neccessary( and when is neccessary for me). My doctor said don't use for more than 7 to 10 days then after that only occasionally. Is it any suprise we are so mixed up about using steroids with such vague advice. I guess if I am not sure whether to to use or not I may as well toss a coin.  
    • Posted

      Norma, your right everyone's condition is different. So are our treatment plans. I'm at a place where I tried the steroids they helped me at first then over time caused me harm to My tissue area and major fusion of the area. I've had 2 surgerys to unfuse the area. I'm not wanting to go through that again anytime soon. I choice not to use the steroid. And I'm trying to use more natural oils in the area. So far I'm doing ok. I've not chanced my diet. Tried that didn't make a difference in any of my flare-ups. Hope you have better luck in your treatments..
  • Posted

    I feel too that treating this is a leap in the dark. Try one thing and think it works well then run into problems and try to decide what caused the problem. I find it extremely confusing.

    Also, I am on a very weak steroid. My Gyno said its 50x weaker than what many are on. . I have worried about that, hoping its strong enough to deal with the problem adequately but he's happy with my response to it. I've had it for many years (LS) I believe. . I have no fusing but I did have white patch that disappeared with steroid and coconut oil. I have burning at new area sometimes that I simply don't understand. as a teenager I had itching in anal area and as part of my adulthood had insane itching on labia majora and some on clitoral hood.

    I did have skin thickening that went down rapidly after steroid. I personally find the steroid has brought me a lot of relief from itching.

    I worry that I had a big flareup in this perimenopausal period of my life. Will it get worse after I'm in menopause? As my Gyno said in response to that question ,"maybe..maybe not". Well, I suppose his answer was a wise one at least but again the impression I have... A whole lot more questions than answers with this disease and they really don't know much about this either.

    I rarely hear women say they have LS on labia majora. I wonder.. Is that unusual?

    • Posted

      Sandra, I know that feeling of over whelming confusion as I call it. On top of the LS I'm dealing with over autoimmune diseases in my body, fibromyalgia on top that. I'm having pains in my lower right side. I feel as if I've aged 20 yrs sence this LS has taken over my body. I get LP break outs in my mouth occasionally too. I'm so discouraged with trying things too. You think it's working then it's like your body pays a little oh no I'm just teasing you moment. .and then your off to the new idea. Right now I'm using Cetaphil cleanser twice a day in the shower and applying coconut oil afterewards. Which I got from this site. I found the cleaning cloths by Cetaphil in a small pack so I carry those with me in my purse and put some coconut oil in a small plastic bottle . So when I'm out and about I can clean myself. Fingers crossed this helps longer then some other things I've tried. I've got multiple changes also down there. White patches, skin splits even at the anal area. I've had surgery 2 times for skin fusions. Also part of the clitoris is gone from the steroid use. I've read an article from California where there going stem cell research and have developed a procedure were using your own fat cells from any part of your body. And use those your stems on the LS areas and have had wonderful outcomes with the LS completely going away with 1 or 3 treatments. Which they can get upto 3 treatments with one harvesting of stem cells from the fat removal. But insurance will not pay for it. The cost is $10,000 US dollars. I looking into it move and doing more research. I would do this even if I had to refinance my home or car.
  • Posted

    Jess, Caroline's answer is the standard wisdom. That white papery skin is just the cast-off crappy over-produced cells produced because of the inflammation at a deep level in the thickened skin. (Only a biopsy can reveal the thickness and cell quality by using a microscope on a cross-section.) 

    I've been taking a lot of long lake swims this summer and my white perineum is sort of textured like it's warped, like your fingertips get after a long soak. But I haven't had an actual tear in months. I've spent most of forty years with a bleeding tear in my perineum. Since I was diagnosed two years ago, I've used Dermovate (clobetasol) for 18 months and then tacrolimus instead for six months. I wouldn't say one worked better than the other, but tacrolimus burns and it's more expensive. I plan on asking my gynaecologist about alternating between the two. Somebody on here mentioned that once.

    I agree with Norma that we have to try what we can to get to the bottom of the reason for the inflammation. After being active on this forum for two solid years I certainly see a pattern of stress (anxiety) being the most common factor. For me sugar is the second. Since I stopped having sex, the vicious cycle of yeast and LS flares has stopped. No sex, no yeast infections, period.

    • Posted

      Will I haven’t had sex in 2 yrs. My flares are still coming. And diet didn't help me with my flare-ups at all. This goes to show us everyone body and LS is as different as day and night. The STRESS factor , is one thing I do believe plays a be role in the LS flare-ups.
    • Posted

      Hiya Morrell, Yep,I am doing my best to work on the inflammation angle. 

      I think low estrogen is a strong contender for our troubles.

      Estrogen cell receptors are in numerous areas that play a part in cardio, immune and nervous systems etc. but are more numerous in vulva cells.

      Lack of estrogen is affecting us at a cellular level and causing problems ie lack of moisture, collagen(elasticity)and healthy cell production.

      This lowered state could make us more vulnerable to inflammation. 

      Estradiol seems to be the most potent estrogen, estroneand estriol being the other two and success is seen with LS sufferers.

      I think topical use rather than oral appears to be most popular as it is applied were needed and it by passes the liver.

      Back to inflammation.

      Adrenaline causes inflammation and cortisol is produce to calm that so I am avoiding as much adrenaline promoting stimuli as I can.

      Hopefully this leaves cortisol to do it's other work which includes producing sex hormones.

      Granted at a lower level than ovaries did before menopause but every little helps.

      Inflammation with diet and enzymes.

      If we don't produce enough enzymes for digestion especially proteases for protein breakdown we can have a leaky gut where protein particals get in to blood stream and put a strain on immune system and off we go with inflammation again.

      ........and on it goes.

      Too end on a cheery note.. past a certain age our hormones and enzymes decrease year by year.

      Oh well soilder on and fight the good fight.

      Good luck ladies.

        

       

    • Posted

      Since last post I have discovered...The potent estrogen estradiol is produced in ovaries,placenta and through a number of precursers in the adrenal glands but in menopausal and post menapausal women the only estrogen present in any amount is the low potency estrogen estrone...Estrone is produced in fat and muscle. Although looking after my adrenal glands is a good policy for reducing inflammation it is not going to do much for my vulva architecture as I am well in to postmenopausal...At 5'5" and 9st. I don't have much fat on me and I think it's fair to say I am past body building...Where does that leave me then either some type of topical hormone cream or face the prospect of a strange sort  disappearing act. 

       

    • Posted

      Unfortunately I react very badly to estrogen. It seems like an obvious solution when so many get LS around and after menopause. But I got it while I was first on the pill, which made me nearly suicidally depressed. Even a little topical premarin knocked me down. I do believe IBS was the cause of my mother's rheumatoid arthritis and an anxious mental constitution preceded that. I have always believed in taking care of diet and using the bowels as a barometer. All easy enough to say when most of us are on emotional roller coasters. Often I think getting obsessed with avoiding certain foods only adds to that. It's such a balancing act. I look back at my three worst flares in the last seven years and all the hoops I was putting myself through, thinking it was caused by anything but my emotions. Hindsight is 20-20.
    • Posted

      Sorry about your mum Morrell. Seems you and your mum have both had a rough ride.

      I started with the birth pill in the 60's but that soon had bad effect on me with migraine every day so stopped the pill and migraine stopped. Too high estrogen can cause migraine headaches. In those days same pill for every one and if it didn't go well then....tough.

      I was on HRT for 17yrs.and it was great for me but my problems have arrived since stopping that.

      Strangely since coming off HRT I have developed ezcema on my right foot along with LS and my doctor thinks there could be a connection between the two.

      HRT I  took was Prempac C.(does that make me a bit of a mare lol.) so don't know if that could have unbalanced my hormonal system in anyway.

      I agree totally that too much stress is so bad for us and over time it takes it's toll.

      It's not good that you need help with cortisol from medication as that says if you have not got a genetic problem then you have been under far too much stress.

      Hormone system is like an orchestra and if one gland is out of tune it upsets the rythme of the other players.

      Activated high levels of cortisol in the brain stresses other hormonal glands.

      It causes  hormone receptors resisstance even when there is enough circulating hormone in the blood, estrogen recepters being one of them. and it is no coincidence that a lot of autoimmune diseases run together.

      The need for high insulin and insulin resisstance is one example.

      If you are anxiety prone it makes it hard work to avoid emotional triggers.

      Anything for a quiet life!  

       

    • Posted

      Many women start with LS in post menopause. What about those of us who start long before menopause? Does it signal hormonal imbalance? Or in my case, is it completely unrelated to hormones? Had a holistic doc trained in Germany, tell me I have a fungal issue. (That said without actually checking me. Just conferring over phone)
    • Posted

      I'm just chillin', happy to be single again and free of worry over sex / no sex, blah, blah, blah, dating bull... Nothing has worked better to clear up my vulva and psoriasis than just doing my creative work, reading, gardening, eating what I want (healthy) when I want, spending time with like-minded friends. Swimming! Watching movies! Listening to music! Maybe I've lived this challenging life and now I get to reap, reap...

      The thing is, there are several people in my life, even half a dozen, who have really scary diagnoses. My little trouble is nothing!

    • Posted

      That's good to hear Morrell,

      It appears you have a positive grip on your life now.

      Keep what's good for you and boot out the rest.

      I like it... may you continue to have good karma.

       

    • Posted

      It is good to know what is best for you in life.........even if that is being single for a time and doing what you want.  I think we sometimes tend to give this disease too much of our attention.  We need to step back sometimes and think of the good things in our life.  I have a great partner but there are times when I like doing what I want, reading even being on my computer. Sending you hugs Morrell.  I hope you carry on enjoying life and yes there are worse things in life than ls.  Carry on reaping!!.....blah, blah, blah, love it!!!!!!!!!  The great thing about being a woman is the perogative to change our minds at anytime, for any reason.  Never say never!!!!!!!!!!!!!  I have realised being celebate is actually quite eye opening.  I enjoy other things in life much more now I am not worried about sexual activities and all that is connected with that, etc.......I can actually say even though I had a brilliant sex life I am happy without it too.  It is not the be all and end all.  Companionship is far more important.  That includes the friendship we all find on this site.  x 

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