More questions from a newbie :)

Thanks Karen. Glad to hear you’re in remission. I am obsessively checking the forum, which is mostly good, with some bad moments that get me down when I read where some poor women are at with the disease. It’s funny how 3 months ago I had never heard of LS and now it’s always on my mind. I’ve had some days lately where I have to remind myself to be grateful that I can see, hear, walk around, work, am not seriously ill, etc etc to get my mood up. 

Hi Jacqueline and thanks for the advice. The urine theory doesn't make sense to me because everyone urinates, so wouldn't everyone have this? I have also heard that urine has anti-bacterial properties. I think the auto-immune theory is right. 

Only way I think it may be true is because what we eat makes a difference to some people. So toxins come out of the body through urine . But then as you said it’s supposed to be sterile and I’ve heard of people using it for skin conditions. I really don’t what to believe ! So many different theories ! 😒 

Thanks Guppy. I remember years ago when I had acne, it responded better to mixing up the treatments every other night, so it makes sense here too. I'll add coconut oil to my regimen and rotate with the emu oil.

Also I’ve just jumped on this borax thing but I wonder how safe it is. I keep thinking about the women who got ovarian cancer from using talcum powder. I know it’s a natural mineral but so is talc (I think),! 😳

Hi butterfly, what I've recently started to do is to put a pinch of borax into my spray water bottle water.  I've only been doing this for about 2 weeks, and so it is too early to say if it will work. 

I have nearly lost my right side labia minora and the left is heading the same way.  Many women on this site swear by it and I tend to believe what they say more than the doctors who dont have LS.  If you wanted to you could try that, as it may halt the progression.  I dont believe it will harm you.  The thing is that it is all trial and error.  What I found was that at the end of the day my Vjay felt SLIGHTLY out of sorts and so I just added more water to dilute the borax a bit more and that seems to have worked. 

I will say that on close inspection that the left side seam on my Vjay looks more prominent than it did before I started doing this.  I will let everyone know after a few months time how things are going. Oh if you do decide to go ahead make sure that when you spray you are aiming the spray at an angle so that the spray hits the top part of your Vjay (near the clit area) and NOT nr the entrance to your Vjay.  I dont think anyones mentioned that before but I think thats important.

Guppy, I am trying to find some science that would back this Borax theory. Have you found any besides personal stories? Found a natural medicine site for cures for everything but alien invasion yet see no credentials re the person who is doling out all the detailed advice. This type of info spreads from one person's blog to the next. Wouldn't doctors be up on this if it were that easy to cure or even just treat LS?

Not saying it doesn't work, just am leary.

I sent away for an essential oil mix specifically for LS that a person with LS supposedly concocted. It was terribly harsh. Would not recommend it to anyone! I think the borax may be relatively harmless, but do be careful.

Thanks Guppy. So my gyno just called me back after the message I left a few days ago. She said most of the people she sees with LS never progress beyond their initial symptoms, which I find unbelievable based on the stories I've read here. I asked her if I should see a specaialist. She said I could but there just aren't many. I'm in New Jersey and the big name near me is in NYC, Andrew Goldstein. So I went on his website and this is what he said about treating LS: "The mainstay of treatment is ultra-potent topical corticosteroid ointment, such as clobetasol propionate ointment applied daily until all active disease has resolved. Patients should be seen two to three month after initiating therapy to confirm improvement. Areas of ulceration that do not resolve after appropriate treatment with corticosteroids must be biopsied to rule out precancerous pr cancerous growths  Once improvement has been demonstrated, the frequency may be tapered down to once or twice per week." So the so-called big expert on this is recommending Clob indefinitely. Even my doctor said not to use it indefinitely; only when I'm itching. Once again, no clear answers. I'll stick with Borox and the oils, unless things get progressively worse...

Hi beverly,  if you read the thread 'experiment with borax' it is pretty compelling and because many woman have tried it I tend to believe what they are saying. Plus, I haven't done anything really to try to stop the progression and so I thought I would give it a go..nothing to lose really. 

Your comment re doctors doesn't make sense to me because you must have read the letters on this site.  Time and time again doctors have proved themselves to be useless, not only that positively stupid sometimes, often ending women off with a thrush diagnosis, or worse a herpes diagnosis!!!  No one is saying borax is a cure, I think we all know that there is no cure, only remission. 

Re Oil mixes I agree with you.  I can't really use oil down below as it often causes problems, but then I am super sensitive, but some women can and so it is all down to every ones own individual experimentation.

Have you watched Andrew Gokdstein’s Webinar on LS? It is about 45 minute long and has alot of great information. He is the pre- eminent expert on LS in the USA and if I could get to NYC or Washington, I would go see him. 

What did I say about doctors? That if were that easy to cure or control LS with Borax they would know it? Do you think they wouldn't? My doctor was familiar with it when I mentioned it. But she said it would soothe, not cure and the steroid would help the most. 

It's true that some posts describe doctors that seem very odd if not outright ignorant. Or maybe they just don't know how to communicate, have little empathy or really have no experience with LS. Certainly they aren't infallible. I come back from appointments and research whatever they tell me, even when I have faith in them

Science, the medical community, however you want to phrase it is based upon numbers, rates of cure, studies, etc.

Presumably this isn't a new disease. I really have no idea how long ago it was classified as LS, but no doubt many people have been affected and I would guess many treatments have been tried over the years. I  assume the greatest numbers have responded to steroids. My general impression from these posts is that any knowledgeable doctor who diagnoses LS prescribes steroids, right?

That doesn't mean all people will react the same way to a medication.  I don't think any two of us even react the same way to the disease!

Because I am using both hormone cream for AV and the medium strength steroid ointment (not the clob) for the LS it's difficult to determine which is the most beneficial, but I am looking and feeling better than when I wasn't using them. It's been a few months now with some ups and downs, but I think we (and our doctors if they are being attentive) have to feel our way according to how our bodies respond.

My experience with the restore oil is a good example of why we should be careful when trying something not recommended by a doctor, however.  I was hoping to avoid steroids if possible.

I'd be interested in knowing if anyone has seen a chinese herbalist or a homeopath and if so what was the result. I have used both for other issues and am open. But for now I will continue with what has been working for me.

I'm new to this disease as is msbutterfly. You've had more experience with it but have different symptoms than I have, I believe.

Hi Beverly,

The majority of doctors that we see about LS know hardly anything about it..that's the sad truth. So we look for help from either a gynecologist or a dermatologist, and even then that is sometimes disappointing and so eventually if you are fortunate enough you find a Vulva clinic were there are people that know about LS and how to treat it.  I see no point in mentioning the word 'cure', everyone knows there is no cure and so it's a moot point.

 

Hi Butterfly, that webinar is a few years old and of course, with any disease, new ideas and thoughts about treatment can change.  Reading what Goldstein says is interesting.  I agree with him that you need to hit LS hard at first to knock it back and go into remission.  What I dont agree with is that you need to use the steroid cream once or twice per week.  I choose to only use the steroid when I have what I call a mini flare-up.  But, that does not mean that I am right and the women that use it weekly for maintenance are wrong.  It is a personal choice and I kinda understand why someone would want to apply the steroid cream once a week, especially for example if they are having problems with their clitoris, I get it! So you see it all depends on your symptoms and of course we all have LS but different symptoms.  My main symptom is related to foods.  If I eat something for a few days that I shouldn't I get pain in my clitoris, it is like a bruise, that constantly hurts. 

With regard to your doctors comments about people never progressing beyond their initial symptoms, I think that's not true.  LS can change rapidly once you are in a flare up.  You have to keep an eye on your Vjay at least weekly. 

What I do think happens, is that you can have LS as a child that occasionally flares with no visible symptoms, perhaps maybe itching.  This can then progress onto another level when you reach your teens, but nothing to give anyone any idea that you have LS.  Then, at some point in your life you may flare and then, of course, you are often diagnosed.  Where it can become problematic is when you hit the menopause and then it really goes up a level.  

What the doctors never mention is that out of the blue you can go into remission for months and even years.

 

I agree with Guppy that Clob should not be used daily or weekly as maintenance, but only during a flare. I used it 2x a day or 2 weeks and my Dr. Said not to use it again unless I had a flare. I occassionally use a dab of coconut oil or emuaid if needed, but am now considered “in remission” and all is calm🙏🏻🙏🏻🙏🏻

Hey, Karen that is great news. 

You thought carefully about the foods that you were eating.  You did the research, discovered your high oxalate diet, cut back on that and on sugar and dairy and here you are!!  

Well done.