Emuaid

Thanks for info! Did you go off your steroids?

hi again...no, I still follow the Dr's orders:  once a week I use Triamcinolone...( try and sin alone???  yuk yuk)  anyway, she (my Dr.) took me off Clobetasol because it had caused irreparable damage, and put me on a weaker steroid.   I follow much of the advice I have read on this forum, using the baking soda in a spray bottle with water, and after every time in bathroom, I use plain emu oil over entire area.  I do not use the emuaid every single day...but anytime I feel even a slilght twinge I use the emuaid and it takes it away immediately.  Then I go back to regular emu oil and on and on and on..........so even tho I don't use emuaid entirely or every single day, it is very valuable to me and I will never let myself run out.  All of us seem to have days when the LS is not causing trouble but then one day it is irritating...the irritating days are when I use emuaid.   I do hope what I have written is understandable...I feel as if I am sort of all over the place.  sorry.

That makes sense. Don't know much about this yet so the advice is welcome!

How often do u spray off with baking soda water?

when I first read the information about 2 pinches of baking soda in small spray bottle filled with warm water, I used it every single time I used the loo.  Since at present I am having almost no symptoms of LS, I use the baking soda spray only after...ahem...#2s...poo in other words. If you read through older letters on this forum, there are letters stating that the baking soda/water spray has revearsed fusing and in general has turned the tissues back to healthy pink color and in general makes the whole area feel much better and healty.  It is true.  Since at present I have almost no symptoms (but I do use the emu oil every single blessed time I go to the bathroom)..I don't use the baking except for times already mentioned.  But, like everyone else here, I stay vigilant and I will not let even a twinge of pain or an itch go untreated.

...see?  I am not paying a lot of attention to what I am writing today...I meant I don't use the BAKING SODA except for times already mentioned.  sorry.

Hi Patricia, I was wondering if you could tell me for how long did you use clobetasol before having side effects and which effects did you have? I have been using clob once a week for a month and a half, and things are not getting better actually I am noticing thin and purple skin that tears which is my main problem from LS is kind of spreading which should be the opossite...When I apply it, skin looks better the next day but then on the third day it looks worst it is really weird, I have mentioned this to my doctor but he said to continue applying it, actually I have found coconut oil and emu oil is better, and because there are no other treatments I am afraid of stop using it, I dont know if I should listen to the doctor or just go with my gut haha

 

Hello...I used the Clob. about a year and a half..exactly as prescribed.  However, after maybe a little over a year, on one of my check-ups, my dr. at that time, an Ob/gyn, said I could use the clob any time I had a little itch, or that tingly feeling, or a bit sore....so I did.  I used it 'way, 'way too often!  I was noticing that the LS was spreading toward the anus, so I thought using the Clob more often would stop the spread.  So, if I had continued with the originally prescribed usage, at that time every other day, I probably would not have had any problems.  It was only reading so much information here, on this forum, I decided to look and find someone who specialized in LS, instead of just a regular ob/gyn.    I found a Vulvar Clinic in Greenville, S.C., and one of the drs. there is a specialist in LS.  She is the one who told me the Clob had caused irreversible damage.  She put me on a different, milder steroid, took a photo of my bottom and used that to show me exactly where to  use the steroid and that is what I have been doing now for about 9 mos.  So I don't really blame the Clobetasol, it was my first dr. saying I could use it any time I felt the need that caused the damage. 

Carolina, by now you are due for a 6 week check-up, right?  If you are, please keep the appt. and see what the dr. says.  I know at first the treatment is twice a day for 6 weeks, then once a day for 6 weeks, then every other day for several months.  I was told that this steroid use is going to go on for the rest of my life, just less often, but still regularly.

If you don't have a lot of confidence in your dr., find another one.  See if you can find a Vulvar Clinic anywhere within a reasonable distance.  The one I found is about 2 1/2  hrs from my town, but I feel very secure with this new dr.  The coconut oil and emu oil and even emuaid is used to keep the tissue from sticking to itself and causing other problems...it also helps to go without underpants...in fact, I only wear skirts...all the time.  Never wear pants at all anymore.  That helps a lot.  And try and see if avoiding sugar will help you.  It helped me very much.

My Gyno said to use my mild steroid once a day for two weeks and then only as needed. I'm still in the two week period but unsure how to proceed after that. When I itch will I run for my steroid or will I head for my coconut oil or aloe Vera gel???? My Gyno told me very very little. Feel so unsure of myself. Besides this being new territory. Without this forum, I would feel so overwhelmed.

Sandra:  please find another dr. 

This LS has to have on-going treatment, not just two weeks then as needed....Of course you feel unsure!  It seems to me you need another dr.  As you read lots of these forum letters, you will see that too many ob/gyns are not really aware of LS at all.  Did your dr. do a biopsy to confirm LS?

I am no dr., and whatever advice I give is really just to add to the drs. treatments that I faithfully follow....I don't recall if you said where in the world you live...I am in the USA....but please go on the internet and see if you can find a Vulvar clinic in your area, or at least a dr. who specializes in LS, not just a reg. ob/gyn.  You need the proper medical treatment first, then go about finding relief for the symptoms.

Makes sense. I am in Ontario. Will do some research.

He did not do biopsy. He said to come back in 4-6 weeks and I think hat if I have a flare up to go back on steroid for two weeks. Said if it gets worse I need to come back.

Patricia thank you so much for your response. My case is a bit more complicated because I live in Latín América and there are no doctors specialized on this condition actually I had to diagnosed myself through research and saw an specialist on Washington on may, the thing is that because of travel expenses and lack of money I only would be able to go once a year maybe even once every two years haha we know how things can change rapidly with this disease so I am pretty much screwed. I sent him pictures last week and explained the situation but is really hard for him to observed things that way. I really feel I should use a milder steroid, could you please tell me which one are you using? to try to buy it online, I also just received emuaid and have completely changed my diet, thank god for forums like this..

Is the 'irreparable damage' the thinning of healthy skin where the excess clob bled over outside the LS affected area? This is the risk of overuse and the reason Dr. Goldstein advises rubbing clob in for 90 seconds. So it's in the LS skin, not sitting on top and running over the edges.

Another solution to this is to ask for tacrolimus (Protopic brand), which doctors hesitate to prescribe because it's quite a bit more expensive than clob. But it doesn't thin healthy skin and any side effects you read about are from large oral doses after transplants.

When you warn to b so careful not to get it on healthy skin, do you mean just to hit the white patches and where the itching occur? Sometimes I have random itching elsewhere.. I'm not always sure how far to go with that?????

I used clobetasol for 18 months on the entire vulva and the funnel area around the anus with no bad effects. I think if you put it on healthy skin it gets raw, so you would know.

Hello Patricia, You said that the Clobetasol caused irreparable damage. Could you say what kind of damage?  I believe I may have done the same thing.  I have used it for 4 weeks.  At first  I used more than I should have.  But, doc. didn't tell me how much or where.  I cut back on amount and was very careful as to where I applied it.  But I still used twice per day.  Now I am so irritated.  I have tears, red spots that look like open sores, and I itch more than ever before.  I am irritated even in area that I didn't put Clob...right inside of vag. opening.  I look like I have been burned crack cheeks. I also have large pimples on bottom just on inside of cheeks next to all the burn looking areas. I am miserable.  I to feel like the labia is also decreasing since I have used the Clob.  I am afraid that it will never get better.  It is getting worse.  Are there women who never get it under control? 

Judy I am so sorry to hear about your situation I think you might be having an allergic reaction to the clob which could happen and maybe you should use calcineriun inhibitors like protopic, such a drastic change in a month is too much, you should go back to the doctor and try to look for another treatment and maybe even another doctor since he did not tell you the propper way to apply the clob on the first place

Judy-

This was my concern and somewhat my experience with Clob too.  After a lot of reading I discovered the Clob should only be massaged as a thin layer onto the white patches.  For me, I only had one very small white patch which disappeared immediately with one dose of the Clob.  However i kept using the Clob for 1 week 2x per day over the entire labia area.  

I noticed the skin thinning, a couple of purple dots (broken blood vessels?), swelling, redness, and my vagina looked generally awful.  I stopped using it inspite of my dr's recommendations and switched to Aveeno 1% over the counter.  I stopped using this too because I dont have any itching or irritation from the LS; my current irritation I believe is due to the steroid.

I'm new to this disease and am trying to figure it out but I read on another site that some women reported having success with white patches and itching with  "Triamcinolone Acetonide 0.1%"....   Maybe others would like to comment if they have any experience with this?

I thought I would ask my doctor for a prescription to have on hand.

Right now, I am trying to soothe and calm the area with the baking soda/water spray and pure coconut oil.  I've been using that for 2 days and so far so good.

 

I have a female dr. who specializes in LS, and she switched me from Clobetasol to Triamcinolone about 8 mos ago...I use it  once a week and I have had no problems at all.  She told me exactly where to put it, and I am careful to follow those directions.  So, I am happy with using the Try and Sin Alone....sigh, Triamcinolone....

I have "severe" fusing in the vulva area.  Have had LS for 15 years or so. I don't think anything could unfuse the area now.  Looks like I don't even have a clitoris anymore.  Sad, depressing, embarassing.  So painful, bad itching.  Sometimes I scratch so hard I rip the skin.  The pain is more tolerable than the itch.  It's ruining my life.  Sex is soooo painful.  Really don't know where to turn and the steroids have NEVER helped.  I've been reading your posts and am going to try what you have done.  Thank you for your posts to a condition not many people know about or would even understand.  If you have any other advice you can give me, please do.  Thank you!

 

Hi is it safe to apply on the inside?