Hi i just wondered what the rest of you ladies use when you are not having a LS breakout but you are still either dry and cracked or worse red and sore. I have tried the coconut oil but it does not appear to help me at all. Any advice please.
Hi Jackie, my consultant has advised me to use this regime for the reset of my life - Clob (steroid cream), a pea sized amount twice a week and Epaderm to wash & moisturise everyday. I have been following this for the last 6mths and have found that the regular use of epaderm has made a really big difference. The skin seems so much more supple and comfortable.
Hi Jackie, I always use the moisturizing cream I was prescribed, Diprobase. I use it to was the area then to keep the area supple, I don't seem to get dry and cracked. However I am on HRT and have been for 30 years, it was when the consultant drastically reduced the dose...at a particularly stressful time that I succumbed to LS!
i understand that several women can have an estrogen cream as well as the dermovate. Perhaps you should ask your GP. It does sound tho as if you are experiencing a flare up of your condition so do keep up with the steroid, moisturise try a simple aqueous ointment to wash with and leave some on to keep the area supple
good luck
Hi, Jackie 73005, I have been using high quality olive oil after experimenting with coconut and other assortment of organic oils/lubricants. In addition to managing stress,drink lots of water, fresh green juices plus occasional natural estrogen.
Thank you sue i will try the epaderm i do have clob (dermovate) but i am always reluctant to use it all the time. However suffering in silence is not helpful either. It is conflicting what the ladies on the forum say some thing the dermovate makes the area worse and some say it helps. I think leaving the LS without the steroid is risky do you agree.
thank you for your response i havent tried diprobase or the epaderm as Sue recommended . I am not on HRT but do use vagifem pessaries for vaginal dryness so maybe this is part of my problem to.. Hormonal!!
Jackie at the moment high potency steroids are the only topical treatments found for LS at the moment. We all seem to agree that stress will worsen the condition and may have caused it the first place, with a probable genetic link. If you haven't watched the Dr Goldstein's lecture please do so it will answer many questions and some you didn't know you wanted to ask!
Several people also have found reducing sugar in the diet, including fruit and alcohol will help flare ups. Do learn about the anatomy and chemical make up of the area and a lot of information will make more sense to you. Google scholar search engine will lead to academic articles too take care
I find hydromol ointment the best x
Do you use the epaderm cream or the ointment?
Jackie, 'dry and cracked' constitutes a breakout. I've gone along for 18 months since diagnosis, using my clob and moisturising like mad. But I still almost always have a narrow more or less white area on my perineum which cracks at the first sign of emotional upset. It cracks much less deeply than it used to and heals up after a few days, thanks to the clob.
I've just been for my third regular 6-month visit with my gynae and was pleased that she was not satisfied with maintaining me at this level. She prescribed Protopic Tacrolimus ointment. I was shocked to realize that the only reason doctors prescribe this 'as a last resort' is that it's much more expensive than clob. Generic clob costs about $25 (Canadian) a year, Dermovate costs $50 and Protopic costs $170 for a year's worth. In a world where many people spend that on a week's meds, I jumped at the opportunity. There's a member of this forum who posted on Protopic recently and wondered why more of us haven't asked for it.
I have the burning as expected (for the first few days). Not very uncomfortable at all. I'm applying nightly for 7 days then back to twice a week. This is the most optimistic I've felt in two years.
Hi epaderm ointment 3 in 1 emollient, bath additive and skin cleanser . Hope this helps
As far as I understand it, LS left untreated is far worse that using a very small amount of Dermovate on a regular basis. I have also been advised by the Royal Free that if things get worse then I will be referred for stem/fat cell treatment. I'm just so relieved to have been referred to the RF as I now feel well looked after
Hi suedm , I was reading your reply to Jackie and was interested about your comments on estrogen , l was taking this several years ago with good results but was taken off it by my GP she said it would harm the lining of my womb , since then l have had raging LS , UTI,s and urine leakage . l have finally got referred to a gynocoligist and a uroligist , my gyny did a biopsy in fact 3 and in the process cleaned up the area , she said to put vaseline only on the area , this was November , until l see her in March . The uroligist said l must go back on to estrogen and that l should never have come off it . l have been taking it for 7 days now , every day for 2 weeks then once a week for 6 weeks then a break for 8 weeks and then start again. Since staring this my skin has plumped out and l hardly leak at all ( not tried dancing yet , thats a big test ! ) l so wish my GP had not been so ignorent , none of the GP,s lve talked to seem to have a grasp on LS at all. ln my long winded way l was wondering what will happen when l stop for the 8 week break will it be back to square one for that time . l will ask the consultant but my appointment is a few weeks away , l just thought you might have an idea as you have taken it for so long . Thanks for reading my loonnnngggg monologue . l am glad things have worked out well for you. Jackie if you stick with this site you will find all the support you need , good luck
Can u explain srem/fat cell treatment. What is it and why would it work? I have tried so many things and although the Ls is sort of under control I have dryness and cracking and nothing works - I have just ordered some soap and cream from recommendations on here and keeping my fingers crossed that something works. I have tried vaseline - bicarb soda and water and coconut oil so far. while at first it feels soothing - by third application its red raw an sore. Have now orered Epaderm Emollient For Dry Skin ointment and emu soap..... will now try some of the uk remedies... I wonder if enviroment influences the outcome of the treatment. I live in a dry, cold and snowy zone with hard water.... Does anyone live in an area like I've described and had sucess with something to moisturize?
Just a side note that the coconut oil seems to be working on my breast.
Hi Winifred, my GP wanted me to come off HRT 10 or so years ago when a damning report came out. I was having a really trying time (husband and work) and said I would take full responsibility for staying on it, I had to sign a waver... Then after having a bleeding uterine polyp...it could be felt in the vagina I was persuaded to come off the combination of oestrogen and progesterone combination( I have monthly bleeds still on this HRT ) and have the Mirena coil and a minute dose of an oestrogen based pill. I didn't menstruate. By now I had divorced and was looking after a dying relative -who tried to commit suicide in front of me- And The Itch Arrived! ( I had the pain the skin falling off the fissures - the lot) I went to a different gynae and back to the original prescription . There have been the odd murmurs about me coming off and in fact I have reduced the dosage, but so far I am prepared to take the risk of breast problems and remain on HRT, it is my body and I believe provided I am aware of the issues the decision should be mine as to what I take or not take. Nevertheless I do have LS and am losing the structure of the undercarriage fairly swiftly, but I do have mostly pink and not dry mucosa. (Sex is still great - if infrequent -and I don't split) when I stress for ANY reason - getting cross, worried or sad The Itch returns. I was then discharged into the care of my GP 2-3 years ago and haven't been reviewed since. I am now wanting a referral to a vulval clinic..that is my nxt battle!
I was told when first diagnosed the sudden change in hormone levels combined with years of stress resulted in the LS changing my diet has changed nothing. Except my weight when I went o the the 2:5 diet last year
My consultant recommends daily use of 1% over the counter hdrocortisone cream rather than a once weekly application of dermovate once the condition has stabilised. This has worked well for 2 years for me, with the exeption of 2 weeks when I had extreme stress and went back on the clob.
However,although the LS was controlled I was red and sore for about a year till a dermatologist explained that even tiny amounts of thrush can really affect damaged skin. Now i use a thrush cream as a first resort if I start to feel uncomfortable, and this usually works.
Hi Jackie
I use a Clobetasol 0.05 cream twice a week. After every bathroom visit I spritz with a mild bicarbonate spray (thank you soooo much for this advice Hanny), then rotate a range of different moisurisers. I use coconut oil most, although some people have had reactions to it, it's a known but infrequent allergen, so, if it doesn't suit you, stop. I also use emu oil and sometimes Weleda Calendula nappy cream. I use Epaderm for washing instead of soap, and have a small tub in my handbag for when I'm out and about, when I use it for washing and moisturising. My consultant said to moisturise 5 or 6 times a day, after each bathroom visit works for me.
I'm mostly home based which makes things easier for me.
Regarding diet; I'm going to open a Hornet's nest here I can sense...
I've had 10 years of a child with a very severe wheat intolerance (dreadful eczema, full incontince, ADHD, mood swings) and managed to clear him. I think the careful diet that we've all been on has helped me and restricted the progress of my LS. We all eat a normal diet now except that habit means we hardly have any processed food and therefore no hidden nasties.
Gluten free and wheat free are two different diets. Be clear about what works for you, they often get mixed up. Many people I came across with auto immune conditions were wheat free rather than gluten free. The thinking behind it is similar to the Paleo diet, modern forms of wheat are too high protein for the body to digest easily, coupled with baking that is accelerated through additives means that we really strain our bodies to process wheat and, in particular, bread. The good thing about this is that we can use spelt and other older forms of wheat in exactly the same way that we'd use everyday flour, so it doesn't restrict our diets as much. There are breads and pastas available made from different grains. The crossover with gluten free is that things you don't expect, like baking powder and soy sauce, have wheat in them so you need to get gluten free varieties of that. When my child was getting less sensitive I found that he could tolerate sourdough bread which has a long fermentation process. Chemical changes that happen in this longer process break down the harmful compounds. Even at the very hight of his sensitivity he could tolerate a bread that I let rise and knocked back for 36 hours before baking. Gluten free products may well have de-glutinated wheat, my son used to react to that horribly, although it was the first place to start when looking for alternatives. Also be aware that sometimes gluten free products can have higher levels of fats and sugars to get the textures and flavours that people expect.
I became an obsessive label reader, and once I realised what exactly went into so much of our food, I didn't want to eat it anyway, even when he was better! LS happened to me in a period of high stress which coincided with menopause and an incompetent GP. I don't seem to have it too severely and think that it's because I've always had quite a careful diet for the reasons above. I can't use HRT, I tried twice but it made me nauseous to the point where I couldn't leave the house in case I threw up, so that's out for me.
We eat sourdough bread made from wheat, normal pasta, though I'm thinking of going back to spelt or corn for myself, I've cut out coffee and noticed a difference from that, mostly cut out wine but don't react to the ocasional glass, and ditto for processed sugar, no puddings, but I do eat fruit and homemade jam. Everything else we eat is freshly prepared and I know exactly what goes into it.
another thing I'm remembering as I write this; Glucose syrup is an additive, it's often used as a cheap alternative to sugar. You notice when the price of wheat goes up in the markets because sugar starts appearing as an ingredient instead, so you have to keep checking ingredients, even of things you know. If it's in something that comes from USA it tends to be made from corn, if from europe it tends to be made from wheat. It's got no gluten, so fine for coeliacs but does have the full wheat protein and my son would react to it. It's also a highly processed form of sugar that the body doesn't cope with well. My scientist brother kept explaining to me how it was so refined there was no allergen left, but 24 hours after eating something containing glucose syrup I'd be washing soiled pants and getting the eczema cream ready.
We moved to oaty granola rather than wheaty muesli and then found out how much fat and sugar it contained, so made our own. Now, after a period of being a bit broke, we're eating processed cereals which isn't ideal, but specialist diets are expensive. I try and restrict our intake and hope for better times.
I hope that hasn't thrown anyone off. We're all different, and will find our balance and I wouldn't like anyone to relapse because of anything I've written here, but I just wanted to throw my experience into the arena and see if anyone has had a similar one.
Hi Suedm , thanks for the reply , sounds like you have been in the wars , you need to get a referral l know thats not easy took me 14 weeks of constant arguing to get to the consultants l have now , its really hard especially when the LS is raging and its impossible to even think straight , but keep trying you will succeed . l got a letter last week saying my gyny consultant as been changed l am now wondering if l have been passed on to a vulval clinic because the appointment is in the same place l went with my daughter when she had a cancer cells scare , will have to wait and see on that one. My problem is the LS seems to encourage UTI,s l have been having tests over the last month and l am having a kidney scan on Friday and a cystoscopy the following Friday already had urodynamics test , hopefully some soloutions will come from all this, l hope so, its not been pleasent all the docters and nurses are very nice and kind thankfully which makes it easier. Anyway trying to be positive , trying not too stress as that sets off the LS , had a lot of stress for the last 18 months but we are begining to see light at the end of the tunnel so l am determind to look on the bright side ( even if it kills me !! ) Good luck suedm , dont give up x
Thank you for your kind words. I was going to ask for a referral this week but second dose of flu has struck me down ...sigh... The last dose was six weeks ending on Boxing Day so instead I had to use my appointment for antibiotics..I did ask for antiviral but she wanted me to go on this first. Sadly I should have been given the antiviral within 48 hours I will have missed the therapeutic window However no problem in getting the Dermovate. You too have had a basin full one way and anotheri have lost tract do you go to the vulval clinic inBristol? Are you pleased with them. I saw that someone was offered stem therapy at the Royal Free in London spam trying to decide where to request referral
Laughter is a great healer so here's to a fun time ahead!