Lichen Sclerosus in Remission??

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. 

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. :-)

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 !!!! 😈😠 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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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  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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?How do you apply lavender oil?

 

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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” 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.