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Lichen Sclerosus

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cheryl72133
cheryl72133

I was recently diagnosed a couple days ago with Lichen Sclerosis and I'm very nervous about what's going on. I think I initially made things worse by scratching and now it's very painful down below. My Gynecologist gave me a steroid cream but it didn't seem to help the itching so I immediately switched back to Cortisone 10 and have been kind of waiting it out. My pubic hair is beginning to grow in and the hairs around the edge of my lips seem to be causing a great deal of discomfort. Has anyone had this issue? I'm so nervous about all of it that any words of encouragement or tips would be greatly appreciated! 

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  • suzanne00
    suzanne00 cheryl72133

    Posted

    Hi Cheryl,

    I have lots of commonalites with you, I think.  I was also diagnosed with Chronic Urticaria a few years ago (high CU index also on antibody testing and chronic hives, in most recent years around my eyes).  Diet changes have made a difference for me. I pared down my diet to whole foods (no grains or sugars for me) and eliminated foods that I'm apparently sensitive to. I also have hypothyroidism which was diagnosed about the same time.  I was put on on thyroid medication, but my high thyroid antibodies are now down, too.  (Yay!) I also had gone through a divorce before all of this was diagnosed.  I now have a new relationship that I am trying to navigate with an LS diagnosis this year.  Not easy to try to keep a new relationship going with this disorder!  I am hopeful that I can put the LS into remission also, and I find that everyone is encouraging on this forum.  Would be happy to talk more with you about any of this.  Welcome.  I hope that you can find suggestions that can make a difference for you!  --Suzanne

    • cheryl72133
      cheryl72133 suzanne00

      Posted

      Hi Suzanne! Thanks for getting back to me! Finding this forum has been wonderful! This is all very new to me. As I said I have dealt with, you as well, issues with my skin for awhile but never like this. I would almost rather this itching. Don't get me wrong, it's awful when it itches but sometimes the pain of it is just awful. They said you're supposed to rub the ointment on it for 90 seconds, there is no way that's going to happen right now. I can get about 10 seconds in until it starts burning. I mean eye watering, in pain, burning. I stop and within 5 seconds the pain stops and the whole thing feels much better for awhile but what if I can't reach that 90 seconds? I'm willing to bet this has a lot to do with my diet. I'm an EXTREMELY picky eater and love my carbs, etc. I have diabetes (type 2) and certainly shouldn't be eating like I do, is this my body's way of again telling me to get my stuff in order? I've got to figure out what I'm sensitive to. This is all so overwhelming. If you think about it though, perhaps my body has been trying to tell me for years? Type 2 diabetes, CU, possibly thyroid issues and now LS.  I would love to talk to you more about everything, we seem to  have a lot in common!! 
    • suzanne00
      suzanne00 cheryl72133

      Posted

      Hi Cheryl,

      You might want to talk with your doctor when you see him tomorrow about doing a complete thyroid panel, inc. testing antibodies.  If the antibodies come back positive, then you do have several autoimmune issues flaring like a number of us on this forum. Chronic Urticaria and LS are at least two that you have.  Have you been tested for Celiac Disease (autoimmune gluten intolerance)?  If not, it's a good idea to ask your pcp to check that, too--it can be associated with all of these issues.  Sorry to hear about the Type 2 diabetes.  There is a fellow who put out a documentary this past year on juicing (veggies, mostly) who healed his Chronic Urticaria, and supposedly others have healed their Type 2 diabetes with his approach.  I don't think that it's juicing, per se, that healed them, but probably our health is responsive to eating in healthy ways.  I'm on a diet that is basically like an autoimmune paleo diet (mostly veggies, fruit, and meat), and I do feel better in many ways (you can google "autoimmune paleo" and read about it).  It's not always easy, but I'm determined now to "eat to live" and try to regain some health, and the effects of that are very reinforcing!  I actually like good food, now (used to like mostly processed carbs)!  My hives have almost completely disappeared (only once or twice a year for a day, depending on what I've eaten).  I hope that there will be enough healing that I can add back more foods in time.  I was a picky eater, too.  Now I have learned to crave better foods, but it takes about a month to rewire our brain (and gut?) preferences.  

      Sometimes the best way to figure out what foods we are sensitive to is to go to a very basic diet, like I'm on, and then add foods back over time to see which are triggering (you can read about another basic diet, the "gaps" diet, by googling). You can also google "elimination diet for food sensitivity" or something similar to find a protocol, too. I don't want to sound preachy, but my experience and research has lead to diet as a major factor in getting better with some of these issues that you mention.  Changing diet can be daunting, but it has been worth it for me!  You'll find other suggestions from people on this forum, too.  

      Personally, I wouldn't worry about rubbing in the steroid if it's painful!  It's important to listen to our bodies.  I don't rub it in as much as recommended because the tissues feel like they will tear and it feels too rough to me to tug on them.  We don't need to cause additional trauma, either!  So I rub as long as I can without too much discomfort and hope for the best!  

      All my best to you,

      Suzanne

    • cheryl72133
      cheryl72133 suzanne00

      Posted

      Thank you for all of your advice! Hopefully between your advice and talking wtih my pcp tomorrow I'll start to get a handle on things. I'm gonna look into all of those diets and see which one will work best for me. At this point I know something has to change. It has to. Thanks again!!!!
  • Morrell1951
    Morrell1951 cheryl72133

    Posted

    Cheryl, I've had LS since I was quite a bit younger than you. I've had remissions for years, lots of sex, two natural childbirths. Everyone here is great, so glad you found us.

    I used to be a 3:00 pm chocolate bar gal and when I was told to cut the sugar way down in my diet, I thought it would be hard. Once the cycle of craving is stopped it's really not hard. That was twelve years ago. I was diagnosed with LS only at age 61 and after six months of using clobetasol I decided to help things along by trying to cut down on sugar. It made a huge difference very quickly. We have to try all these other things because it takes patience to stay with the clob.

    That mons spot where the hair tufts and wants to grow back in can be SOOO itchy! Really try not to scratch and do find some stress management techniques – stress is a big factor for lots of us.

     

    • cheryl72133
      cheryl72133 Morrell1951

      Posted

      Thank you!! Yes I'm getting through the hair growing back thing and as of right now am vowing not to shave it ever again, lol!! At least not there, I don't care how weird it looks! 

      I'm glad to hear you're managing fine with LS. It seems to be something that aside from flare ups or your first time dealing with it, it can be pretty manageable. I'm trying! All these suggestions have been great. I think the most important thing is my eating, the sugar, etc. I need to make a change. Lots of research to do! I'm so happy I found this site though, it's been a huge help!

  • hanny32508
    hanny32508 cheryl72133

    Posted

    Welcome to the "club" Cheryl.  As I'm reading through the responses lots of support has been given already.  Great people on this forum.  

    I was diagnosed about a year ago, but probably had LS much much longer.  To be diagnosed at age 35 is to your advantage.  Early treatment in combination with regular check ups will give you a much better chance to keep LS under control.  I'm 64, too late diagnosed the LS has therefore progressed too far.

    Early diagnoses is key!  Now you can follow instructions from Dr. Goldstein and others right away.   Wishing you well.     

    • cheryl72133
      cheryl72133 hanny32508

      Posted

      Thanks for the support!! Finding this forum made a world of difference between yesterday and today. I watched the video Dr. Goldstein made and it was very informative. So much to learn about something I never knew existed! Thanks for all the well wishes!
  • marey
    marey cheryl72133

    Posted

    Hey cheryl

    Hope you're feeling a little better and more comfortable!

    I found the other discussion about hair growth causing a problem. I had not heard of that before so it stuck in my mind. Here's the extract from 'The causes of LS' another of the many threads on here which you can refer back to. Dakangel was the woman who was talking about her experience of this...if its of any help to you? She'll prob be back in due course. Anyway hope its of some interest to you!

    dakangelk8 »marey • 2 months ago

    My theory for mine is definitely hypothyroidism

    I also developed large under the skin boils/ cyst type things ( can't remember the name)

    I believe these are all down to an auto immune disorder but bloods are fine with the exception of my CRP which is elevating

    My lichen isn't too bad overall but flares up time of the month.

    I have also developed an intolerance to the hair being near it and causes a flare up

    Not sure what other folks think? Xx

    _ 1 vote F Report g Share< reply to dakangelk8[dakangelk8] ★2h="" dakangelk8 »marey • 2="" months="" ago="" to="" add="" to="" the="" other="" ladies,="" i've="" had="" two="" children="" (14="" and="" 4)="" and="" had="" many="" cysts="" and="" 5="" lots="" of="" keyhole="" surgery.="" still="" get="" a="" lot="" of="" pain="" in="" the="" left="" side="" at="" time="" of="" the="" month="" despite="" having="" my="" tube="" and="" ovary="" removed="" nearly="" 5="" years="" ago="" x="">< reply to dakangelk8[dakangelk8] ★2h="" dakangelk8 »marey • 2="" months="" ago="" during="" one="" of="" my="" ops="" they="" managed="" to="" stitch="" my="" ovary="" to="" my="" bowel ="" painful="" but="" had="" to="" wait="" for="" stitches="" to="" dissolve!="">< reply to dakangelk8 [marey]="" ★6="" marey »dakangelk8 • 2="" months="" ago="" oh="" no="" darkangel...i'm="" so="" sorry.="" you've="" had="" quite="" a="" bit="" of="" surgery="" ....including="" something="" equating="" to="" tubal="" ligation...so="" this="" cause=""  of="" ls="" onset="" seems="" to="" be="" featuring="" quite="" a="" bit.="">< reply[marey] ★6="" marey »dakangelk8 • 2="" months="" ago="" thank="" you="" so="" much="" for="" your="" response.="" very="" special="" that="" hair="" is="" an="" irritant="" to="" you....is="" it="" awkward="" to="" manage="" or="" are="" you="" finding="" a="" way?="" do="" you="" have="" to="" shave? ="" sorry="" to="" hear="" that="" your="" are="" suffering="" pain="" on="" your="" left="" side.="" what="" do="" you="" think="" that="" could="" be="" about?="" thinking="" of="" you="" and="" willing="" you="" to="" feel="" more="" comfortable="" soon.="" love="" marey ="">< reply[dakangelk8] ★2h="" dakangelk8 »marey • 2="" months="" ago="" i="" do="" shave="" it="" away="" from="" the="" area's="" it="" agrevates ="" [smile]="">< reply to dakangelk8

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    • cheryl72133
      cheryl72133 marey

      Posted

      Thanks Marey! I'm definitely feeling a lot better w/ regard to the hair. It's seems to have grown back and is no longer aggravating the area. I think it was just an inbetween stage that was driving me crazy. I'll continue to watch it though!
    • marey
      marey cheryl72133

      Posted

      hey cheryl...thats great!

      things getting onto a more even keel for you....really good news!

  • suzanne00
    suzanne00 cheryl72133

    Posted

    Hi Cheryl--Forgot to ask yesterday if you have had your doctor's thoughts about whether you might have "folliculitis" with the regrowth of your pubic hair.  Not sure from your description what might be happening, but sometimes the hair follicles can get a little bacterial or fungal infection (you can google to see if the description might fit what's happening).  I hope that you are feeling better!  --Suzanne 
    • cheryl72133
      cheryl72133 suzanne00

      Posted

      Thanks Suzanne! Things are much better with the hair. It seems to have grown in from my shave last week and is no longer irritating the area.....thankfully!! I'll keep an eye on it though because I have had issues in the past with ingrown hairs. 

      My area is feeling a lot better this morning, the cream is definitely working. Let me ask this. Once your flare up goes away. What do you do for maintenance? I know you talked about zinc, vit b & e but do you still continue to put the cream on every day? Do you take a break?

      Talk soon!

    • suzanne00
      suzanne00 cheryl72133

      Posted

      Hi Cheryl--So glad to hear that the hair issue is resolving!  Also glad to hear that the cream is helpful.  Is this the clobetosol cream that is the strong kind (not over the counter cortisone cream, right)?  I know that Dr. Goldstein recommends this strong steroid, and in the ointment form which seems to provide a better barrier and absorption.  Typically people seem to be prescribed it once daily for a month, then every other day for a month or so, then two times a week maintenence, as this is a chonic condition that many people need to keep suppressed over time.  There are variations on this regime, and many patients here advocate non-medical interventions instead or or along with the strong steroid cream, so have a look at our forum for ideas.  There is also much written in the forum on best creams and ointments to use in addition to the steroid cream, like coconut oil.  Others may want to add to my comments here, and as I said, there's a lot on this forum that is informative.  I haven't tried the zinc, vit b, and e yet, but it looks intriguing!  Let us know how you are doing!  --Suzanne
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