Diagnosis

Thank you so much . I am 57 years old and just about through the menopause . I have quite a bit of loss on the left hand side still managing to hang onto the right hand side although no where near as much . Although I didn’t know any of this until I looked . I am 3 days  into steroid cream , the itching is manageable and I seem to just have an all round burning feeling this morning but I think that is because of dryness . I have found out where to get Borax in the uk , I have also sent off to amazon for books , watched half of the dr Goldstein presentation , I am confused , obviously if I am using steroid cream when do i put the oil on , a good friend of mine has suggested spraying with bicarbonate of soda solution after every trip to the bathroom , I am scared to death , trying to get everything in check , I feel totally alone , my husband has shut down to me , which is hard , in the beginning you think oh my god I am a freak . I am better emotionally today although still have “the shakes” from not enough food or sleep but I am sure this will calm down . But I am scared so so scared . Thank you all for your support xxxxxxx

Hi Jane, this is a scary thing. I just started with treatment a couple months ago and am still confused of what to do, when to do it and where to treat it. I think the mental pressure of this makes it harder to focus. I have made appointments with every kind of doctor I can...I will see an immunology Dermatologist in a few weeks and try to get clear instructions. He supposedly specializes in this. I don’t have a husband and am sorry yours is making this more difficult. He too is probably scared... Hang in there, Iam learning to try and take one day at a time because I cannot think beyond that at the moment...keep posting dear...

Thank you Linda , I am reading up about everything I can . Someone said olive oil is good , loads of people swear by Borax , which I have just found out how to get . I am day 3 into my steroid cream , watched the Dr Goldstein video half way but am going to try what he says about soaking before applying the cream. I am frantically doing pelvic floor exercises to get rid of the panty liners. I have bought cones although my dr took a swab and all that area is fine , but I thought start as you mean to go on . The itching is less just an all round burning feeling now but manageable . I need to get a spray bottle I think . I also have three books from amazon coming . My big problem is I am cold all the time , because I have not eaten for three days , I am trying to get my feelings under control , I finally gave in and ate toast last night and slept until now , my husband is very much “ we have to get on with it “ so I am really struggling with that , there is a lot of conflicting information out there , but thank you for your support . I am truly blessed to have you all . Please keep in touch xxxxx

Conflicting information is caused by the fact that not two women are the same when it comes to LS treatment...it is about trying out various advice and see if it works for you. Be glad and grateful for the support and advice these forums offer....

Hi Jane, I found myself very cold when using the Clobetasol to a point of raking chills...when I stopped the med the chills stopped. I too am not eating well, still trying to figure out how this is related. The diet issue can be difficult as we carbs for our body to burn and use as fuel. I bought oatmeal that is certified non gluten. The Clob is acting like a major diuretic and even though I drink a lot I feel wiped out. Hope you have good doctors, I am keeping a journal to help me help the doctors...rest, rest and rest...best to you..

You use a mild detergent for sensitive skin...wash your underwear separately, wear only cotton pants.

Thank you again Dani, thank god your on here x

I use a laundry liquid with no perfume in it I found in my local health food shop. I use it for all my laundry. When I bought a different brand recently, the whole family went 'phew! can e have the old one please.' You don't notice how strong the perfumes are when they surround you all the time. There are also Soap Nuts which are natural saponin, you can find them in health food shops too. I have used them successfully too. Again, no scent.

diana, I dont use the steriod much, only in emergencies because I simply dont feel its necessary.  What I can say with confidence is that I have never heard of the steroid cream giving you cancer..the steroid cream thins the skin because it becomes very thick with LS.  So, the cream wont give you cancer, please dont believe everything your doctor says as they are often very wrong.  I hope you feel better tomorrow.

Also, the women that get cancer are usually the ones that have never bothered to see their doctor in the first place, or have been misdiagnosed.  I wouldnt worry about cancer..really.

Keep positive...burring your head in the sand will not help you, LS will not go away, you need to learn to manage it and talk to your doctor. LS is an autoimmune disease....learn to look after yourself and not stress about it too much as it will not help you. Stress is a major trigger, as it is refined sugar....cut it out of your diet.

Using the steroid cream to treat a serious illness like LS is not causing you any damage, you are treating a diseased skin not a healthy on, if you do not apply enough steroid cream on the genital area, LS will spread. Skin regrows all the time

Since I am somewhat new to this disease the emotional fear of “what is going to happen to me” is a ongoing struggle. I know my lifestyle will never be the same and the dark cloud moves in. I can relate to the surreal feeling of this is not happening to me, make it go away..  I am hoping there is one doctor that can pull this together for me. I think my bladder is now involved..to much pressure all the time...hugs to you...

Hi Guppy, do you not have much inflammation and redness? I am loaded with both, it irritates badly, isn’t the steroid used to decrease that? What do you do to keep the inflammation away? I can’t even walk without feeling the inflammation coming on. Have the sensation now that something is wrong with my bladder, constant feeling of pressure...any ideas?

Cream doesn't give you cancer. Thinning of liner of vagina can lead to getting cancer in some cases. Please read about.

Please read about creams. They are suppose to be used very light when applying. Yes stress I believe has a lot to do with LS and hormone unbalance. It is like lime disease how long it took for all doctors to treat the right way. I also have fibromyalgia a lot of doctors still don't recognize as a disease. Needs to be more studies on.

My head is not in the sand. I have my faith in God. Very strong person who sometimes cares about everyone more than myself. Do care. Love you all.

I care very much....but I am also a realist as far LS is concerned, have been dealing with it for a long time, got experience, pain suffering under my belt.

Take care

I am very aware of the steroid creams and know how they work or how to be applied, thank very much....have been treating myself for years.

God bless. Hopefully one day there will be a cure. And why this is happening to all of us. Take care.

That's nonsense. Please stop telling people that they will get cancer if they are not careful.

Hi Linda, no, I have no symptoms at all.  Why this might be (and I'm guessing) is because of my diet.  I am gluten free, almost dairy free, and I rarely drink alcohol.  I have lots of food allergies which mean my diet is very restricted.  I do still have sugar sometimes..otherwise I feel wretched.

The use of the steroid cream is tricky in my view.  I would only use the steroid cream if you have white plaques or skin or a painful/itchy clitoris.  Those are the only times I would use the steriod cream.  I think it is too strong to use on sores/redness/rashes/cuts etc.  Stop the steroid cream for a day or so and then after washing try something like Desitin cream or someone similar.  Many people make the mistake of constantly applying creams/lotions/oils when in fact its far better to give your body a break from all that.

I think if you can go gluten-free that might help..you could test for a month and see if you get any relief.  If not, you could go back to eating gluten.  But honestly, I firmly believe for most of us its sugar that is the main culprit.

The bladder issue  I'm not sure off, it could be connected to your current symptoms and maybe if you can get relief from those it might go away.

Hi , great advice . I wonder if you can help me with something , we already eat a low sugar diet and I am vegetarian what diet if things do you eat on gluten free please . I am beginning to think I am going to have to start eating meat again as my options seem to be very limited , grateful for any advice xx

Hi Jane, I was a vegetarian and then I developed problems with salicylates which are in most veggies and so I had to have a rethink.  Gluten isn't in vegetables and unless you have developed a sensitivity to vegetables (like me) then I dont see why you cant continue with your current vegetarian diet..  

Nowadays I eat steak once a week,   I eat chicken twice a week.  I eat prawns and fish once a week. The rest of the time I try to eat a large mix of veggies in my Wok.  I make my own bread as I dont trust the stuff in the supermarket, even the gluten-free bread.  I love oat milk, rice and quinoa milk and the only dairy I have is butter and sometimes yogurt.  I dont drink cos I cant (I am histamine intolerant) 

I am curious why you feel your diets not working for you anymore.

I am just concerned I am not getting the right vitamins and minerals , I also know I have to stop panicking . I have not eaten for three days now , not sleeping and permanently shivering and cold . The good news is I am three days in on the Cream and it does seem to be helping , I am just wondering how to get some of the fusion back , I have anxiety very badly , so am already on the train to blocked urethra ,odd if clitoris etc etc. I feel very very scared , thank you for all your advice xxxx

Jane you dearheart,  who told you to do such a long fast? Not everyone's body is able to tolerate such a rigid program.  I know for me if I were to do such I would be like you, shivering.. and snapping people's heads off or curled up in the fetus position with a horribly growling tummy  i"m 72 and haven't done such violence to myself since my early 20's in a metaphysics program. 

Interestingly, I had just decided yesterday to do a one day 24 hour liquid fast. NOT just water, but clear fluids: FlaxMilk; Nettles Tea; Chickpea Miso (not soy based); Sparkling Kombucha live probiotics.  All very healthy and won't give you a tummy ache.  No shivering! smiles and a wonderful way to give our livers and lymph a day of rest. 

You are right about the vitamins and minerals.  I've researched that like crazy the last 3 months and now have a very helpful protocol I"m following. I've posted it here a couple times, but I have a few tiny updates to include and will make an easy to read list that I've figured out (for all autoimmune issues) as soon as I can. 

 

Jane, I am on my way out but will send you a proper reply manana. Nancys correct, you must eat something in order to start healing.

Thank you Nancy . The fast wasn’t intentional , it’s been ever since I was diagnosed , I can’t eat , can’t sleep feel like my life is over , on the train to fused everything !!!!!! Can’t see any light at the end of this tunnel xxxxx❤️

Thank you xx

Hi Jane, please try to stop driving yourself crazy, we all feel devastated at first, I certainly did, but as well as the usual prescribed medications, I followed the great advice on here, trying different things, and apart from some tight skin around the perineum fourchette area, everything looks pink and healthy. One thing I think helps is olive oil, massaged in a few times a day. Many women here are using this. Take care x

Hi Maggie thank you . How do I do that with the steroid cream . How long to wait after ? Also tried it a bit the other day and stung  like mad , I’d it supposed to do that initially . I think the cream is working as much less itching but the odd tingling going on xxxxx

OH Oh so sorry Jane! no your life is definitely not over as many long time experiencers here tell us we can walk this thing back. Interestingly, some of the anxiety conditions that you are mentioning are symptoms of major nutritional deficiencies such as magnesium.... and guess what? I discovered in my search of the literature online that the nutrition needed to combat autoimmune diseases includes many of the minerals that are also known to aid in depression etc. I'll repost a condensed version of what i found last month today.

Brilliant if you could do that Nancy I would be so grateful xx

Hi Jane, what I used to do was after a shower in the morning put one treatment on ie. Olive oil, and after my evening shower put on the steroid ointment, so it works overnight. When I was initially diagnosed I was using oestrogen cream in the morning and steroid at night. When you cut back to the maintenance dose there will be more times you can use oils etc. I use the pharmaceutical olive oil from Superdrug. I'm in the UK. It is much better than the peppery one for cooking I find. xxx

Hi Jane, I have a feeling you may be thinking that your vegetarian diet is somehow responsible for LS (due to lack of nutrients) That's not the case.  Nobody knows exactly what causes LS although there is definitely a hereditary link, and for all you know your great great grandmother may have had LS!  

Anyway maybe it is not a bad idea to introduce fish and chicken into your diet, it sounds like your ready for a change and this will give you more options.  

In a few months time you will look back at how you where feeling and know that the worst is behind you. Read everything you can about LS it will make you feel more in control.

Thank you Maggie that is brilliant information xxx

Thank you you guys are just so positive xxxx

I agree re. the bread. If you look at shop bread the ingredients are a paragraph. There shouldn't be anything there but flour, salt, yeast or water. I also make my own. If you can't do that, then look out a small bakery that makes theirs on site. It's more expensive, but that's because it's not full of rubbish to keep the costs down. Think of it as delicious medicine. If you make your own it's very cheap of course, and soon fits into the rhythms of your life, especially sourdough where none of the timing is critical because it doesn't flop if you don't get to it in time.

Regarding gluten free foods, many are full of rubbish and very high in sugar to make them feel like their standard counterparts. Get into the habit of checking ingredients. It does all become second nature soon.

Good luck

Bridge

Hi Nancy , thank you , feeling slightly better today , we have it we have to live with it . I am looking at diet also if you can recommend any supplements that would be great . Speaking to most people they seem to live with it , control it , most people don’t seem to worry they just get on with it . I hope I can get there . Xxxxx