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I'm feeling so distressed with this it's all I think about. I keep tearing/splitting at 12 o'clock. I apply the clob once a day and use Hydromol too. I've been to GP six times this year and no one examines me. Had my Gynae appt in July. Told him my concerns. He just said apply Dermovate 3 times a week and didn't examine me. My follow up appt is April 2020. I've now changed GP practice, but the female GP only works one day a week!! Getting an appt is a nightmare.
I'm 55, had a hysterectomy 3 years ago and I do believe lack of estrogen is a contributor, although GP says it's not.
I'm going on holiday next week and dreading it.
Is there any advice out there that could perhaps help? x
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Eta: SKIN TEARING!
do you make sure that you soak in very warm/hot water (I add epsome salt) for about 20 mins before applying your clob, and then be sure to rub it in for at least 90 seconds. My dr didnt advise me of this so for the better part of a year I thought that the clob didnt work but it turns out I just wasnt applying it properly. I saw it in a video about lichen sclerosus. When I started applying the clob properly it mad a huge difference.
hi there, i am sorry you are experiencing this. i have the exact same problem. i have had this for about 10 years and i am sorry to say that there is nothing i have found or been able to do to either prevent this tearing or to heal it any quicker than waiting it out. when it is healed i am always careful with the washing , drying and wiping of that area for the one fact that the skin is very very vulnerable and given any reason it will tear..again ! I sincerely hope someone comes up with an answer for both of us. x
Hi Toni- golly girl I know you want to have a fun and comfortable holiday! smiles.
The fastest healing of splitting skin for me has been liquid vitamin E from the health food store. ALSO Aloe Vera gel which is the most wonderful soothing emolliant that also has healing abilities.
But Toni and Pamela, hopefully you've read up on the long term "side" effects of topical steroids, right? The side effects is THINNING SKIN Splitting skin, and a long list of other uncomfortable conditions. You might want to consider not applying any steroids while on vacation. Toni I m 73 now and didn't realize I had LS until 2 years ago at age 71. I chose not to be go the steroid route. Instead I've been building up my immune system through best nutrition research I could find. I've got a whole list I posted a year ago you can find by going to my name and looking p my discussions list. Just last week for a friend not on this list I looked up which of the 28 or more nutritional supplements are specific for skin issues:
vitamin B Complex, plus extra Vitamin B6
Chromium or Berberine
and by the way, Melatonin really helps me with overactive bladder so I can enjoy going out for the day without worry about where a dang bathroom is. It apparently also helps with balancing our hormones besides the sleep circadian rythmns.
oh honey - but I 'm sure you know that your holiday will be ever so much more comfortable if you simply don't drink alcohol or too much sugar intake, as well. argh...
toni, what was the outcome when you saw the gyn in July? Try to find one that specializes in vulval skin problems. As this is not a common condition GPs will not have had much experience with it and would avoid a time consuming exam that wouldn't change what they say anyway. The fact that a GP would say lack of hormones has nothing to do with it is a good reason not to see a GP. The gyn I saw (who sees women with LS daily) told me in my case it was definitely hormone related. (I am post menopausal and was already diagnosed with atrophy). She prescribed hormone cream along with the steroid. I hope you are using a hormone cream! I have found that if I spread it over the area rather than just at the vag entrance as directed it helps with the discomfort from the LS. It defintely has helped with the AV.
Beyond steroids there's nothing doctors are going to prescribe. If you read through all that has been posted here on LS you'll see some see dermatologists (not all handle gyn issues) prescribe stronger immunosupressants like tacrolimus or protopic. Whether or not they are the answer I have no idea, but some have reported they are more effective.
I have changed my diet, take a load of supplements, started with a milder steroid but now use clobetasol and STILL see no change. I don't have a severe case with cracking and splitting skin but it is slowly spreading. When I first used the hormone cream and steroid my reaction was immediately positive which lasted about 6 months, then the LS slowly returned.
I have contacted an MD who has gone back to practicing medicine more as a whole body approach (if I say what they are called the moderator will block this post). As this doc was affiliated with a very well known hospital as a specialist in sports medicine I hope to discuss PRP (platelet rich plasma) with him as a possible treatment. If you are in the UK it is available there. I saw a video clip about it being injected gentitally years ago. I have found it just about impossible to find a gyn to administer it for LS where I am although I know it is done in other states.
Other than that I'm afraid I have no immediate suggestions to offer you to help you feel more comfortable over your vacation. Various people use various things (unfortunately) with various results. What works for one does not work for another. You have to go on your own quest as medicine seems to be lagging far behind.
MY OBGYN HAD ME CHANGE HOW I WAS APPLYING CLOB., She also suggested i use the ointment instead of cream and take an
epsom salt bath every single night and try not wearing underwear when you go to bed.
I also found out UCSF is adding a vulva specialist in 2020, if you live nearby.
We live 4 hrs away but looking forward to seeing someone who specializes in this condition.
TME, it always amazes me to hear that anyone would wear underwear to bed. What is the advantage in doing so? I've always found wearing anything to bed created discomfort in general with waistbands on PJs and nightgowns riding up. With LS I think it can be a lot more comfortable to avoid wearing underwear at home as well. During the summer wearing cotton dresses and letting your skin "breathe"feels much better to me.
If you do see the specialist please let us know if you are given any new info.
I believe lack of estrogen is a factor. I was tearing in the same spot. I went through hell for years before I saw the doctor about it and I was really in bad shape.
My gynecologist prescribed estrogyn cream initially daily, .5 mg inserted vaginally and globetesol ointment (not cream) with 1/4 menthol daily (very cooling), a tiny amount (applied sparingly in a figure 8). Things did settle down in a couple of weeks.
Now I use the estrogyn cream and plain globetesol ointment twice a week for maintenance and all is going extremely well.
I also use Vaseline twice a day as a barrier, don't use soap at all down there. I rinse with a squeeze bottle after using the toilet and pat dry, never wiping. couldn't use epsom salts because they dried me out too much. I feel 95% normal again.
Might I recommend seeing a dermatologist with a background in LS.
I think you could be right about the low estrogen levels as I had my third baby 8 weeks ago and as I'm breastfeeding my estrogen levels are at their lowest. I having been using dermovate for the last 4 months and my white skin patches have cleared up. However I have starting tearing again (I was ok while pregnant) when I go to the loo and with sex. Feeling quite upset about it, I have no sex drive but feel bad for my husband who has a very high one, now I cant even try to enjoy sex for fear of tearing. The first time we tried after our baby was born was a week ago and I tore and had burning pain for two days after when going for a wee. I thought because I have been using the dermovate that this would not happen this time. I was diagnosed after going through the same issues while breastfeeding my second baby as it got very bad and I finally went to the doctor about it. Don't think there is much i can do about except to stop breastfeeding which I don't want to do. Sorry for going off point a bit. My point is that in between pregnancies and breastfeeding my doctor had prescribed me estrogen tablets along with dermovate and that definitely was helping. The condition in my opinion is very closely related to hormone levels. So I would definitely recommend looking into estrogen tablets when you see your new GP - lots of them would not know enough about it so maybe seeing someone who specialises in the area, I saw a dermatologist who specialises in genital dermatology.
I just read Nancys post and it reminded me about taking the supplements she recommends! I had been doing that before i got pregnant but stopped with the pregnancy as I wasn't sure if I should be taking things herbal or not. Anyway I do think they had been helping and I'm going to start back on them - high dose vitamin D and boron in the am, MSM powder in the afternoon and zinc & magnesium in evening.
I am so excited that I have finally found people who I can talk too about my problem. I have read these threads and I EMPATHIZE with all of you. I AM 49 and had a total histo at 35 that put me in menopause due to endometriosis. I WAS D/x with LICHEAN PLANUS 3 years ago but my job switched insurance carriers so now I have KAISER and I BELIEVE IT IS LS...... QUESTIONS 1) which department would handle my concerns .? I wish I could go back to the Doctor Who first diagnosed me and help ed me in the beginning with hormone creams and clobetasol But I can’t because she is not take my health plan.........2) Ive been pushing men away for 2 years until 6 months ago because 50% of the reason is Im scared of the pain that I experienced the last time I TRIED TO HAVE SEX !!!!! My new boyfriend is making comments about sex/marriage and I Dont know when and how to tell him my issue...... So WHEN do I tell him? and WHAT do I tell him? 3 Sometimes I miss going to events because Im having a "flare up" , my vulva has changed, and i cut my thinning skin by wiping or washing. WHEN DOES THIS END.?
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