dermovate ointment

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Hi all,

I'm newly diagnosed to this particular nightmare and this forum is the only place where i can get any information or help, I'm so glad it exists! I've been using the ointment for nearly a month now and I'm getting sore red patches on the healthy skin at the top of my inner thighs and around the schlerotic skin around my anus. Is this caused by the ointment bleeding out in the night to the healthy skin and buring it? I'm menapausal so i sweat a lot at night and wonder if this is what's making the ointment spread out. Plus the bad areas continue to get more sore despite the ointment. Is this normal? And everything is still dissappearing too........... quite qickley. Is this also normal once you've started treatment? I'm waiting for an operation to remove a VIN and i don't think I can get to see the geany until then. Also, do any of you have any theories about the cause of this being down to trauma? Like non consenting sex i mean. Mine started around my anus and i wonder if a nasty experience there many years ago is what triggered this LS.

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  • Posted

    Hi Jane,  Sorry you have joined us.  I've occasionally found that even with the dermovate I was sore, but you should look at the webinar by Dr Andrew Goldstein that is mentioned in one of the forums where it says to soak the skin first in a bath or bidet for about 20 minutes, then rub the ointment in for 90 seconds or thereabouts.  This may help, most of us were not given that information and it could help.  Whether it is normal or not I don't know.  I also don't know about the disappearing structure, I think I'm quite lucky in that respect, at least I hope so.

    Some other sufferers were asking the same thing about traumatic experiences, there is so much on here for you to look at which may help, alternative treatments etc, although I would suggest keeping up the treatment if possible and if it remains sore, go back to your GP., especially if the op is some time off.

    Once you can get it under control, that would probably be the best time to try alternative treatments unless you just cannot get control, in which case the alternative methods may be more helpful, it is a case of trial and error, I'm afraid, so many of us are trying different things and if they help, or may help, we post on here.  So, you've got some reading to do!

    Good luck.

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  • Posted

    Dear jane

    I am so sorry to hear you have LS.

    You clearly have some good, strong instincts about the cause of your condition...I urge you to pay attention to these instincts.

    There are others who are very clear that abuse was the causal factor for them and there are some detailed accounts here for you to peruse. I think they may be within the Alternative Medecine section. You might check 'cured but it took work' and sequelae. Other testimonies are in and around there. This was a very generous sharing for the benefit of others.

    I am following an energy medecine treatment.

    The woman who undertook her personal experiment with this method has written a book. She succeeded with her own healing ...she not only recounts her experiment in defeating the disease....which at the moment is said to be "incurable" but makes the details of the process available for others to follow should they wish to do so.

    Its rather a tense time on the site here at the moment as we await  anouncement of the book.

    Obviously I wish to share what I can, but in my own way, please, and cannot yet respond to the various questions (and inevitable rejections-in-advance), of this technique. It is understandable that people will want to protect themselves.

    Frustrations arose due to the fact that I was unable to upload a picture of the covers ...on the back of which the author explains her story. I am one of the people following the author's methodology. We might be able to form a group of 'test cases' and work together to support each other. That is my hope. Further announcements will be on the Alternative site but as most women come here first in search of a way forward I would like you to know that there are options.

    The book will be released soon and details wil be put up in the alternative meds section. The author has offered to answer any questions and suggests I compile a list which she'll respond to asap. 

    The author has been verbally attacked in the past and rejected from a site similiar to this in the US. She makes no claims for anyone else but wishes to share her methodology.

    I want to protect the author from further aggressive questioning or insulting comment but if all goes well I hope she may come on here!

    I hope this gives you some encouragement.

    With love marey x

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  • Posted

    Hi Jane, I think you've understood the ointment details well. It could be that you're using a bit too much. By the time I've massaged it in for 90 seconds, there's none on the surface.  If that's not it, then it sounds like you might be better off using it in the morning when you can spend some time going 'commando'. Sweat in itself, like urine, is a major irritant to our flared flesh. I wear a very loose nightie (tucking the fabric between my legs) or cotton knit pajama pants and make sure my thighs have no contact with each other in bed.

    The treatment works very gradually. I expected too much after six months, but now that it's been a year, I'm very good. If you reasearch the Koebner Phenomenon (or effect) you'll see why sexual abuse is a factor in LS.

    That red area around the anus causes the most discomfort for me. I also was badgered to try out the 'back door' in my twenties (I'm 62) and I'm sure that didn't help. I've confirmed that greatly reducing sugar in my diet seems to take the gasoline out of my excretions and that 'ring of fire' has calmed right down. Quickly, as in two weeks. After that I admitted to myself that coffee relaxes my bowels and cause very loose movements that are caustic to that same area. I gave it up in two steps to avoid the worst withdrawal headaches. My gynae was very impressed, as I happened to have my regular appointment (twice a year) after that. I really proved to myself that it's sugar the other day. I had a veggie pita – very healthy – and with it a tiny mango smoothie, which I guess had a few spoons of sweet frozen yogurt in it. And last night (it takes one day!) sure enough I had an angry red area around my anus.

    So, I'd say do your best to keep it all as dry as possible. Use something the consistency of petroleum jelly all day to keep urine from coming in contact.

    I really hope that helps. I wish for your sake the Dermovate (Clobetasol) could work faster. The fact that you already have VIN on a patch of skin means you really don't have time to experiment.

    That said, seeing your GP or a dermatologist to be sure you're not having a reaction might be a good idea. Eyes on the spot are important. Describing discomfort to each other here is so relative!

    Keep us posted. Glad you came.

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  • Posted

    Dear MarieC, Marey and Morrell,

    I'm having real problems with my old computer and it will only let me reply here. I'm getting a new one next week thank god. Thank you all for your responses, they are very helpful. I'm going to contact the consultant who diagnosed me as I have an email address for him as after looking up the side effects for dermovate I'm not sure all this soreness,redness etc isn't to do with the ointment as before using it i only had a bit of itching around the anus. Now it's getting sore to sit down!  And in my experience with medicines, if there's a bloody side effect I'll get it. Re the alternative stuff my friend said she knows a kinesiologist who is treating a couple of women with LS, but i don't know more than that. I'm tempted to stop using the dermovate and see if the soreness goes away, but like you pointed out Morrell, I may not be in  position to experiment. I've had the anal itch for at least 10 years so I must have had this undiagnosed for a long time. It's really starting to get me down, especially as i now have symptoms I DIDN'T have before using the ointment. I don't have a lot of faith in my GP re this. My genitals and anus feel increasingly like they are on fire! I have been doing the bath and rubbing it in for ages and I don't think I'm using too much. I'm increasingly looking like the barbie doll someone mentioned down there. So, if that's progressing so quickley, maybe so is the soreness. i just don't know what to do!

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    • Posted

      Hi Jane - Morrell is right - this takes time and perserverence sadly Please do not stop using the steroid it IS the only treatments that has been shown to work albeit slowly, and sometimes not without discomfort. You may be allergic to an ingredient in the steroid ointment you have been prescribed. Do please spend the time and listen to the Dr Andrew Goldstein's webinar I will look for the link after this for you. Thee doe not seem to be a classic group of symptoms or behavious of this condition. Sadly. It does appear to be an autoimmune response to -? possible trauma in our pasts, that could be phyiscal or just plain stress . We have been asking each other questions and giving our experiences in the hope we can see some similarities. Some haave intense itching - that stays or comes and goes, other lose structure of the vulva, others white patches others in places other than the vulva. Several have other auto immune conditons too, so you see it isnt a simple easily resolved conditon. I have found stress to be MY trigger - Morrell says sugar  - others will have different experiences both in the way the LS flares up and in the way they can resolve these flares. there are those who will talk about cures - but not what the cure actually entails - whether the cure is a return to the normal structure or just a cessation of symptoms, so I tend to take every day as it comes and keep moisturised withthe steroid ointments and if necessary the barrier creams

      Look at the past threads and you will find a host of helpful tips on managing particular difficulties- some with greater - or lesser effect. Good luck and educate your GP - I took in screen shots of the slides on the DR Goldteins talk to my surgery and they were really very grateful to have up to date  and clinically researched information

      Good luck and dont get down hearted there can be Good Days too

      Sue

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    • Posted

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  • Posted

    Also Marey,

    I don't see how to find the alternative treatments section of how to find the entry you mentioned cured but it took work. I only seem to be able to see posts related to something i've repleid to or posted myself.............. the search bit didn't help. Sorry, i'm not brilliant with technology and I've never used a forum before........ x

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    • Posted

      dear jane

      so sorry for your distress...until things settle down with the right meds for you...have you considered a few comfort type remedies? Sky in her post, trying a little experiment, particularly recommends manuka honey...that's the one thats actually been tested to prove its efficacy from New Zealand...but probably whatever you have in your cupboard would help until you can get something organic.

      If you are wanting to try something that could have a big impact but is a relatively small change...you could try a suggestion which worked for me that I read here ...which was to try giving up gluten....i ended up quitting all grains, not using gluten free replacements, but, just changing my diet to cut out pasries, pasta, pizza...I do not miss them...and now look at bread and all that stuff with horror!!  There's a lot of support for this lifestyle...if you check out ...Paleo...you'll see what i mean. Its fun to be a part of! 

      I hope this helps.

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    • Posted

      cured but it took work is a live discussion that is still ongoing in the Alt med section..i'll come back to you with her name...see you in a mo!
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    • Posted

      hi jane

      back again ...she calls herself 'fixed up'...maybe on the thread she shares her name but its entitled 'cured but it took work'. The active principle for her was a herb called coptidis rhizoma...but she would have been taking that in the context of other things with support from an alt med practioner...i believe she saw an acupuncturist..and others. hope this helps. There are things out there. you're welcome to join my friend's protocol that I'm following too...when published you'll be able to follow the work book. I need a title to put this under in the alt med section...all my efforts get taken down so need to find a compliant way!

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  • Posted

    https://patient.info/forums/discuss/dr-goldstein-lecture-271556

    this is the link - it takes nearly and hour but it is well worth  listening and seein ghte slides

    Best Wishes

    Sue

    ps This is the only link that the moderators allow- as it is NOT a commercial site

    Trying to sell on this site i believe is totally unethical- there are other places to sell goods and wares. There are too many people desperate ffor help who could be persuaded to buy or undertake inappropriate items and activities. DO take great care

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  • Posted

    dear Sue,

    same problem, I can't reply to your post. Thanks for helping, i have watched the webinar. Have you had a reaction like this to dermovate, if that's what it is? It's getting worse daily.....................................

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    • Posted

      Try again to tlk to me - or go to the envelope and write privately if you wish
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  • Posted

    Hi Jane,  

    sorry you have become one of us.  I began this 'adventure' about 32 years ago.

    My husband passed away after many years of illness and the stress for me was

    more than I could cope with and I do believe that  stress is the culptrit. I sat on ice cubes for years for relief which did not work and Doctors told me to stop being so silly that there was nothing wrong.  Cortisone helps stop the itch but not the problem.  The first to disappear was the clitoris which is still there but covered over with scar tissue.  Next the inner labia went and now the outer has all but gone. I too look like a barbie.  I would love to have all my parts returned but I

    don't think that is possible.  I have noticed the use of the letters VIN - what does

    that mean?

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    • Posted

      The term Vulvar intraepithelial neoplasia (VIN) refers to particular changes that can occur in the skin that covers the vulva. VIN is not cancer, and in some women it disappears without treatment. If the changes become more severe, there is a chance that cancer might develop after many years, and so it is referred to as a precancerous condition.
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    • Posted

      Dear Sheila,

      so sorry to hear of your troubles. What a horrible thing this is. I have wondered about stress being a factor too, anhd menapause is waht's really quicked it off for me  as i had it for at least 10 years undiagnosed but with no more than an irritating anal itch. now it's going crazy and vanishing vulva at a rate of knotts. I have been so upset about it lately.............. thanks Morrell too for answering Sheila's question. i'm still having computer problems.........

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    • Posted

      sheila...thanks for sharing your experience. its terrible that you were treated like that.

      how is your teatment going now? are things a bit better? i do hope so.

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    • Posted

      I do not have any ongoing treatment other than renewing my prescription

      for Betaderm cream 0.1%.  I don't have the same level of itching now but I also don't look like a real women anymore.  The Doctor never asks how

      I feel about this situation ...no discussion at all.  However she is wonderful about everything else.  There are no answers for people

      like us..

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    • Posted

      oh sheila...don't be down...well its understandable it gets to us all at times...i'm not familiar with betaderm... but if you'd like to try something else you're welcome to join me in following my friend's protocol...i'd really appreciate the company! She overcame LS.   xx
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    • Posted

      she's fine....am sure you'll get to know her...but maybe try not to undermine her...or your own prospects for recovery. you are welcome to join me and any others who'd like to follow the protocol...but you would need a positive attitude at the outset to avoid being self defeating.

      alternatively you could acquire the book and follow it in the privacy of your home...then no-one would know and you would not feel any pressure on you to demonstrate belief in something that you sceptical about...then if you recover that would be a bonus and if you didn't well nothing lost as you weren't expecting to.

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    • Posted

      Sheila most of us are using Clobetasol/Dermovate and believe it to be the only one that has any effect at all. Also it is ointment not cream and that is a very important distinction. Creams seem to have more chance of irritating ingredients.
      Report

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