Lichen Sclerosus in Remission??

Posted , 17 users are following.

Hello Ladies - First of all, I want to sincerely thank all 1528 of you in this group forum.  You have helped me tremendously with this horrible condition.  I read all the posts and gather little gems of knowledge from you all, from the questions and responses.  It’s so helpful.  I believe my LS (which I have been struggling with for almost a year now, diagnosed by a biopsy) is beginning to go into remission.  It was BAD.  It is at least finally calming down, gradually.  I have many days now where I feel nothing, no tingling, no itching, nothing.  The white is almost entirely disappeared and my skin tissue is no longer swollen and inflamed (dare I say everything almost looks normal).  I feel 99.5 percent better and everything looks like it’s fully healing.  I am 42 years old.  I had a tubal ligation at the very end of 2016 (which I’m convinced contributed), as this horrible condition began shortly after that.  I have an arsenal of vitamins and supplements, herbal teas and many things I added to and have eliminated from my diet.  Lavender oil was a big game changer for me topically along with Clob (which I use as directed).  Cutting beer, gluten and sugar from my diet has changed my entire world with LS.  “Maple Syrup” someone (an amazing contributor here) I must thank for that beautiful thorough post about diet, leaky gut and inflammation.  It changed everything.  I’ve gathered up all of your ideas and suggestions (from many of you) and complied together what has almost made LS go away for me.  It feels like a miracle.  I know my struggle is not over but whatever it is that I’m doing (wish I could pin point the ONE thing it is), it’s working.  I’ll post here exactly what I’m doing, taking, elimating that is working for me (I’ll post here soon - need to get my kids to school now) but I wanted to start a forum about remission.  As anyone had complete remission (even remission for years etc) and if so, what did you do to make it happen?  Tips?  Ideas?  Might be helpful to us all as I hope my list will be for you all.  I promise to post it here.  I have five kids so I’ll do it ASAP.  I want to be specific to help you all.  It will take time.  Thank you all again.  I’m grateful for this group.  I know I’m not alone, far from it.  

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  • Posted

    Hi MamaBear

    Your words will resonate with everybody that shares this forum. Nature is a funny old game and LS is a very soul distroying disease. I would like to add that having this disease is teaching us patience, tolerance, strength, empathy and love for the simple things in life. 

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    • Posted

      Ree, I so agree, I am still getting tears eyed when I tell people I have this. I am telling many people I have this and even my male friends because we are all adults and it is better to let people know. 
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  • Posted

    Hi MamaBear - so nice to hear of someone getting the better of LS, even if it is only for a period of time. I too would like to know of anyone who has been in remission and for how long.

    I believe I am going through remission now, my GP has confirmed this and I am a lot better, however I still have tingling from time to time. I am 64 (diagnosed last year after 5 years of complaints)  and have been using betnovate, which definitely unfused a part of my labia. I use borax swabs when I feel it is more irritated and all the creams and ointments mentioned on here for moisturizing. I take Vit D and Magnesium, but have not changed my diet much. 

    I too think my problem was triggered after a colposcopy/hysteroscopy and loop procedure on my cervix. I started a thread on here to others about 'triggers' and some have said their LS started after gynae surgery of some sort. 

    I have heard or read that remission can last for up to 4 years, but for some reason not after you are 70, so it will be interesting to hear from others about this. 

    I will be interested to read your next post about diet. :-)

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    • Posted

      Hi sarb definitely after colposcopy,  it's the hpv virus that causes the abnormal cells!! Do you suffer with any other health issues 

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    • Posted

      Hi Karen

      yes I tested positive for HPV at that time, but have been negative since. I can only assume my immune system was to pot at that stage, but came good and fought off the HPV, but now has turned in on itself with LS (auto-immune). But once again, I am no doctor so have no idea if this is correct and my GP doesn't really fill me in when I ask these questions. I don't suffer from any other health issues, so can't relate it back to anything else. 

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  • Posted

    Hi Mamabear. What great news, thanks for sharing. I too am SO grateful fir the wonderful people on this forum . When I found this years ago I had just returned from my first gynae appt and felt desperate, depressed , alone and scared to death. The information and heartfelt welcome I got helped me no end. Then it was all about managing the symptoms, steroids, how to use them ( as most of us were not even graced with simple instructions on how to use it !!!! 😈😠wink Now we have come into the new era of knowing about autoimmune disease, anti inflammatory diet and Vitamin D3 K, magnesium etc. I recon a lot of us know more about LS now than most drs and gynaecologists. I will be going for my annual check up next month and intend telling the consultant about this forum and to get him to recommend it to anyone he knows has LS or at least newbies to this God awful condition. Well done everyone and thank you from me too. God bless xx

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  • Posted

    Mama Bear, thanks for sharing that hopeful and inspiring message! I, too had a tubal ligation but that was 23 years ago. I was diagnosed with LS just six months ago, and have tried to maintain a positive attitude and have changed my eating habits as well — both which I believe have contributed to my slowly getting relief from this dreadful disease! I have noticed that wine sad  aggravates the condition, as does stress and  overwork.  I loved to sip my wine which helped my cholesterol, but not anymore! Now it is exercise, no sugar, low carbs and boy that had helped me immensely! I also take vitamins plus iron and feel that has significantly helped my symptoms. I am amazed at how many people suffer from this and thank God for the internet and for patients like you on this wonderful forum which give the rest of us hope! God Bless you and may you continue to heal and share your progress with us all!!
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  • Posted

    Hello all - I wanted to apologize for taking so long to post what worked for me.  It has been a month since my post here.  The good news is, all still appears to be going into remission.  I have a list of vitamins and supplements I take.  I’ll list them below.  Once things calmed down I stopped the lavender and switched to clob, ONLY applied about once a week.  I don’t have a set day, I just apply a little dab, rubbing in for the full 90 seconds ONLY if I feel that slight tingle.  It’s like my body warning me it’s attenpting to come back.  The clob knocks it out and usually I’m fine immediately, I feel nothing and I’m good for a week.  I do notice the tingle more around my period.  I do believe hormones are at work somehow and I notice as long as my bowels are healthy and clear, it’s all good “in the hood” wink Seems to play a part.  I do believe that is one reason my diet changes have helped.  I have tossed glutens.  That’s really the main and only difference with my diet and it changed my life.  I believe it helped cease this horrible disease, or at least ALMOST completely stop it.  My tissue looks normal like nothing happened which had you viewed it last year, you’d never believe it.  It was bad.  My OB has no clue how quickly it vanished.  I do strongly credit the lavender oil.  I strongly credit tossing gluten.  And I strongly credit tossing heavy sugar and alcohol.  The clob and the supplements to me are just maintenance.  The other things changed my life.  I do notice a slight tingle there like it’s trying to “activate” sometimes if I need to #2.  I do and it’s usually instantly gone.  That feeling disappears as if my body says, “toxins too close to this vaginal tissue, please get rid of them”, I do and that feeling vanishes.  It’s why I believe diet has a lot to do with this.  I don’t believe it’s what causes it but I believe that it’s like throwing gas on a fire.  It’s just going to inflame it.  You can purchase gluten free breads here everywhere and they are really good.  I eat a lot of corn tostadas and corn tortillas in place of breads.  I eat pasta still but it’s gluten free.  I ditched cereal.  I ditched beer, only have an occasional IPA, maybe once a week as a treat.  I make sure I don’t back up and with me tossing gluten, breads and heavy pasta and pizza etc. I don’t anymore.  My bloating which was terrible is gone and I’ve lost 12 lbs in one month from just stopping gluten (that’s how quickly tossing glutens and sugar helped me).  I know it’s connected because of cause and effect.  It just is.  I stopped applying all kinds of heavy creams and remedies to allow my body the chance to build its natural flora back to help me.  I tried everything down there you can imagine.  I did.  I only use clob now and only once a week as that’s around the time I feel that tingle.  If the tingle happens when I don’t have to have a bowel movement, I apply it.  It’s rare now.  Thank God.  I was seriously losing my mind.  I gave up bathing in borax.  I am attempting to heal from the inside out.  I know it’s auto immune so I know that is challenging and possibly impossible for some but what I’m doing is working.  I am in shock that it is but it is.  I have to get my kids to school but I wanted to send this.  To the person that asked about the lavender, I got a stopper and dripped it directly on the affected areas with a mirror.  Awkward but effective.  I do believe the lavender was a game changer in stopping the fire that was blazing out of control.  The clob now works for maintence.  If the skin tissue visible issues ever return, I’ll pop right back to the lavender.  I see it as the topical cure and the clob as the deep skin tissue remedy.  Here’s the list of supplements: Omega 3, calcium, magnesium citrate, one a day vitamin, B12, vitamin C, iron, glucosamine condroitin, turmeric (I love this!), biotin, and the big dog bad ass power punched life saver I believe: Probotic ultimate FLORA supplement.  Water water water, stay hydrated.  I try to get rest and reduce stress which with my life is impossible.  I do my best.  I’ve wondered about experimenting with cannabis creams to replace the clob which I will likely do soon.  I don’t smoke it or consume it but I know for a FACT that cannabis is a powerful cure topically for inflammation.  Might give it a roll.  Anyway, time to round up my kids for school.  Best to you all.  I will continue to post on my progress.  May we all continue to come together to find a way to kick this to the curb.  Together.   

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    • Posted

      MamaBear said " I am attempting to heal from the inside out?" and that MamaBear is exactly what I was thinking the other day.  So I ordered Bone Broth Powder, and other things to begin Keto Alkaline.  I went on NO sugar, dairy, grains in September but the LS was coming and going quite regularly.  I began a straight Keto diet in March and lost 8 lbs and it seemed to help the LS tremendously but I was so constipated.  As soon as I slipped up (discouraged to the max) and ate sugar I had a horrible flair up.  LS has now spread from Vulva to Anus and feels like glass to sit long.  

      ?The Keto Alkaline is from Dr. Anna Cabeca (just for anyone who wants to know more)  I'm hoping it will be the benefits of Keto and also keep me moving daily poop wise.

      ?I have to be on top of this as I am 65 and have fatty liver and hypothyroid and other conditions...too many to be complacent any more ever!

      ?Thank you for the vitamin list.  I can't afford too many things but I have Biotin in my cupboard and a few probiotics left.  My smoothie this morning is spinach, ginger, collagen stevia.  I'll go see what all I can take

      ?Also making chicken soup with bone broth until my powder gets here.  So lunch and supper will be that.  Dr. Axe says Rice is ok if sprouted first and cooked to a mush so I have a wild mix in with my chicken in my instant pot.  Lots of cooked vegies too.  I'm watching all videos I can on leaky gut and autoimmune diets.  I like Dr. Axe for that.  He cured his Moms stage 4 cancer.  She is still doing well on good diet.

      ?BTW I also have the MTHFR methylation problem so my Vitamin B12 and my Folate have to be methyl.  No folic acid.  Hard to find B's that are that way.  But found Thorne has a Prenatal that fits almost everything you list.  I just have to purchase it.

      ?I find your posts extremely encouraging.  To know that you are fighting and winning this.  It's so too bad there is no cure.  The fact you are still occasionally "tingling"  but doing so well for the most part is awesome.  I'm so happy for you.  

      I wonder if when it spreads to anus if that is harder to treat because it may be up inside?  Just a thought.  But curing from the inside out even if it takes all the rest of my life is worth a try.  

      ?Again MamaBear Thank You so much for the info.  Have fun with your kiddos.  Yes Together!!!!

       

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    • Posted

      I make my own bone broth.....I boil the daylights out of a bag of bones, for many hours, I use my slow cooker and leave it overnight....amazing broth and make my own soup. 

      Usually LS spreads to the anus and steroid cream must be applied all over the back passage.

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    • Posted

      Hi Martyanner, how long have you been dealing with this? I think I also have leaky gut because I have had problems for awhile....Keep up the fight, Iturn 60 this month and I want to live a healthy happy life...

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