Normal for LS or not?
Posted , 7 users are following.
I have been using the steroid cream religiously for past couple of weeks and thankfully, the itch seems to be mostly gone. Also the sore red patches seem to be diminishing steadily. However, my right little bit of inner labia that I have left seems to be constantly sore and very sensitive. If anything rubs on it, it is really painful. Even patting dry after using the toilet irritates me. Also using the steroid cream in this area is often excruciating. I remember I had the same problem with my left inner labia (when it was still there). Is this pain just because it is disappearing and maybe it will stop when the labia is gone? Also I am very surprised how quickly my inner labia have disappeared. It's quite a shock really. Is this normal for LS?
0 likes, 23 replies
Jeepers g30rg313
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Yes, once it all settles down to wherever it's headed, it might not happen then.
marey g30rg313
Posted
Perhaps if you were to be vigourous with the application of creams eg coconut oil for example after batheing in epsom salts, and directing a strong spray of water at the area you could stimulate the remaining labia so that it remains with you?
There may also be some assistance through the use of iodine and also promotion of optimum nutrition with supplementation. These are slightly different strategies which we are exploring over on the Alternative Medecine section. You are welcome to come over and join in and are entitled to be a member of both sections!
Very best wishes
Morrell1951 g30rg313
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Guest g30rg313
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Morrell1951 Guest
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I'm here a lot and there have seen a number of posts by members who are using Protopic. From looking it up, it sounds like doctors prescribe it when Clobetasol fails or causes a bad reaction.
The suggestions for using various creams and oily moisturisers and barriers are almost always in addition to the clobetasol or halobetasol or protopic.
The only suggestions that get posted for a complete rejection of the standard medications are attempts to promote the idea that it's worth experimenting with extreme dietary changes and supplements to achieve a total 'cure'. Extremely risky when damage can happen so quickly.
Thanks for supporting the sensible way to deal with LS.
marey Guest
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thanks for your contribution. I'm in the uk and had discussions about protopic with my medical team. i was invited to try clobetasol first.
very glad to hear you are doing well. keep us informed. i read an earlier post from you and found it useful. thanks again!
with love marey x
Guest marey
Posted
Thank you both for your comments!
Morrell, I've seen your posts out here at lot, and they are always helpful and supportive - thank you so much. And yes, I completely agree with you about the "sensible way to deal with LS." I was trying to say much the same thing when I initially posted last night - but you did a far better job! I think what I was trying to say... is that I sometimes worry about some of the posts I see on this site. So often there is a newcomer to the site, wanting to learn about what to do after a recent diagnosis... and there seem to always be several replies concerning various supplemental creams, etc. but not as many posts concerning the use of actual medications prescribed by a doctor. This disease definitely requires professional attention and cannot be addressed solely with home remedies, unfortunately.
Marey, I'm glad to hear you're working with a team of people to resolve your LS issues. The deal with Clobetasol... is that if you use it every day, it thins the skin. My dermatologist is very concerned and constantly warning me not to use it too often. Protopic is much more effective to use around sensitive skin areas that are already thin enough, such as that affected by LS... in addition, Protopic has even been prescribed for my son to treat eczema around his eyes and other sensitive areas!
I've also read some of the others posts below, addressing a general lack of knowledge regarding LS even within the medical community - and I wholeheartedly agree. Moreover, LS is not the only COMMON medical issue I've dealt with in my life, for which knowledge seemed to be lacking within the medical community! Very frustrating indeed. All the more reason for us to continue this forum...
Sending you all good wishes!!!
Morrell1951 Guest
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Morrell1951 Guest
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Here's the thread that has a link to his lecture.
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
marey Guest
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Your good wishes are very much appreciated...so too is your motivation.
I'm a trained nurse myself and aware of the onerous responsibility of our profession. unfortunately there are complex issues at play here. These need discussion and a thorough airing....so if you have the stomach for it (!)...I'll dip my toe in these waters in an attempt to try to achieve reconciliation and better understanding of what might seem like two entrenched and separate camps (by the way I don't advocate quitting steroids without a substantial alternative or at least a reliable plan in place prior to such a step)...if I understood correctly you are concerned that mention of alternatives is coming across as a bit irresponsible. But of course you were far more tactful than to have put it like that!! Actually I'm fascinated to hear that you think the balance has swung that way...I was of the impression that folk were getting frustrated by the replays of Dr G, and that, his particular constantly repeated message was becoming bleak and alienating. (Why has Monty Python just popped into my mind!!?). Didn't one of them get "alienated"?)
I think that it is important to recognise the limitations of the medical profession or more specifically the limitations to research and the politics of that whole area.... (I would prefer to think of doctors and nurses as being above reproach...but of course we are all human and some are going to be more dedicated than others with the odd scoundrel among us for good measure!!)....however that said i think i am less than keen on the current methodology behind research. I really do not believe that torturing animals will result in good effects for humankind. Even and including the absolute latest that supports the 'leaky gut theory' (which its well known that I'm rather keen on - although the woman I'm following who has achieved her own cure from LS...having been discharged by her gynaecologist 5 years ago as being free of the condition....doesn't rate it!! leaky gut that is...this will please those who are interested in AVOIDING special diets ...!!) really hope everyone's looked this up by now(!!!).... the leaky gut thing. But I suppose I could force myself to try to describe it in the Alt Med section...though maybe someone else would??? Pleeeeeeeease? Suzanne has already offered a very wholesome explanation which could be sought out and replicated under the heading with added references and our usual extensive and analytical plus chatty dialogues. Anyone for the endeavour of putting up the topic of Leaky Gut? This would be in Alt Med and could involve copying the pre-existing dialogue about it on this side over to that new section? So it can be found more easily and referenced. The section has only just started and is slowly being built up on a topic arranged basis as we get to these things....with the stories of women's healing and questions and guidance on how to follow or how to find yet another way, being paramount.
This brings me...by way of a necessarily winding path ...back to your original concern MwG (I know you partly talked yourself out of it !! (by being able to see other's point of view and the short fall of medical knowledge in particular)....but I think there's more going on here than meets the eye. The whole mysogenist area of research labs and futurist gloom and horrorfying multi national plans for the future need challenging. (And you just thought you'd come on line for a quiet scan!!)
The latest research which endorses the LGT (Leaky Gut Theory...this isn't official short hand ...just mine for now) is based on the the 'Brain Gut axis' and the hypothesis has been substantiated by medical research involving rats ...actually this needs a WARNING as its not very nice ...but leaky gut has been shown to cause leaky brain ...and in turn 'leaky brain' alzheimers etc) to cause leaky gut. This was demonstrated by causing focused damage to the brains of healthy rats who within half an hour then developed leaky guts (which previously had had healthy gut integrity).
I aim for healing myself but as is the case for many women...it won't stop there. Women and supportive men will be changing the world. Lets be part of it..........!! Phew don't quite know where that came from but now i'm going to go out and do a silly little dance and to find someone who 's good at having a good laugh and at being ridiculous!!
sending you good wishes too..and thanks for your contribution. I think you are an excellent mediator!
love marey xxxxxxxxxxxxxx
hanny32508 g30rg313
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Morrell1951 hanny32508
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hanny32508 Morrell1951
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marey hanny32508
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thank you for articulating your experience so clearly. this is precisely my objection to the high handed way patients can be misled by over zealous misrepresentation in the medical world. that said its clear our medics are under extreme pressure and have little time to spend with patients...this would not be something they would wish for.
i agree it would be extremely helpful if the limitations of the current steroid regime were more honestly presented up front....at the same time it would be wise to pay attention to the halting of further decline if we haven't yet got a regime in place which is addressing the disease process.
probably a combination of both is a good idea....until any alternative healing practice has kicked in and can be seen to be reliable....by the individual who is undertaking the endeavour.
suzanne00 marey
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marey suzanne00
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Morrell1951 hanny32508
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What I take from this is that LS is extremely varied (as Dr. Goldstein said, possibly four different diseases) so when we are first seen it's impossible to say what the speed and extent of our disease process will be. After a year of treatment it's easier to see. And easier for us to hear.
To my one-year visit. I went armed with a page of info on supplementary management, questions about how many LS patients she has (1000!) and an offer to coordinate a support group.
So, we both evolve into the situation. If I had remained as anti-steroids as I was ten years ago I hate to think what condition my vulva would be in now. We can't blame our doctors for the unpredictability of the speed and extent of LS. They can't know in a few minutes whether we're cool as cucumbers or stressed-out drama queens. They don't know whether we love our tiramisu or live on adzuki beans and kale. They don't know whether we expect and 'need' to have sex three times a week.
So, yes, as one cutting-edge pediatric allergist said to me when my kids were small, 'you need to be your own doctor'. But he wasn't saying I should never return to him. So, let's not be throwing the baby out with the bath water. The prescription is correct. There is only clobetasol and for some, protopic. But there's plenty of other stuff we can do.
marey Morrell1951
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