Hi everyone,
I've been reading all the posts with much interest and what a relief it is to find that I am not alone!
I am 70 and have had LS for 18 months now, having been diagnosed by a skin specialist. But it took a good 12 months to get there after I kept being diagnosed with urine infections because my samples were "cloudy". After numerous courses of anti-biotics which of course were useless and numerous hospital scans which turned up nothing except a benign ovarian cyst, my urologist noticed my inflamed vulva and suggested I see a dermatologist, who immediately diagnosed LS which I had never heard of. She prescribed a steroid cream which worked very well and seemed to keep the itching in check. She also asked if I had ever had thyroid problems and I said that I had suffered from an under-active thyroid for ten years. Apparently it is quite common in LS cases.
A year ago I had to have a shoulder operation and had to have my arm strapped tightly across my body for 24 hours. Although it was painful, it was nothing compared to the LS which immediately flared up under my arm where I couldn't get to it! It was agony. I suppose it was the stress that caused it and I do notice now that if I am ever stressed the LS does get worse, although it seems to confine itself for the most part to my nether regions.
I have reached a stage now where I need to use my steroid cream two or three times a week and worry that I am using it too much. I tried emu oil without much success, but I read on another forum somewhere that people had some joy with "Crisco" which, believe it or not, is an artificial butter substitute used extensively in the US for baking. I sent for some from Amazon which came in a few days and it has been a great success. I think it acts as a barrier cream protecting from the acidity of urine. I still need to use the steroid cream every few days but it's so much more comfortable in between. The beauty of it is that you don't need to refrigerate it.
Anyway, I digress......I really wanted to know whether there are many people out there with LS who have an underactive thyroid? I heard that at the age of 67, your body starts getting all these annoying little things wrong with it. And it all adds up to one big PAIN!
Annieflipflop (who sympathises with you all)
Thank you for the tip regarding Crisco Annieflipflop. I'm borderline underactrive thyroid and thus have my thyroid blood test checked annualy but have had LS for a few years. I didn't know I had LS and self treated my itchiness down below with Canesten. I am now on various creams and gels which I use daily and a steroid cream for outbreaks of the pesky LS. I see a Vulval Dermatologist once a year. The latest visit was timely as a week before I felt a lump but thankfully it is just a gland which is a bit inflamed. Also this latest annual examination led me to being prescribed a spray lotion which has just come onto the market. It is really good as it means It's one less thing to rub on an area already prone to soreness. I also get rashes under my arms, the last one a fungal infection which has now scarred my skin and have raised dry little nodules. I have been prescribed a bacterial fighting moisturiser for this but it may not make them go away but will stop them being so dry and flaky, however, the Vulval Dermatologist said it is not LS. Anyway, thank you for taking the time out to recommend to others something you have found which helps.
Tigger123 (who also sympathises with you all)
I'm so glad to have found this forum. I was diagnosed 6 months ago after 2 years of being fobbed off as a hypochondriac by my doctor. Luckily we moved and I got a new one who spotted it immediately.
My daughter was diagnosed with LS at 4 (via a very traumatic visit to the child abuse clinic because she bled. Thank goodness clinics exist, I'm not complaining, but it was stressful to go through) I think that was part of the problem. The Doc thought that I'd read about it and now I 'wanted it too.' As if!
I seem to be responding to steroids - I'm scared to write this in case I jinx myself, I'm so glad to feel there's something I can do at last. Looking back I'd had sore spots for years with hormone fluctuations. It's only really come on properly with menopause.
I'll look into the thyroid link, I fight tiredness all the time. I thought it was a natural result of having two very lively children, but maybe that isn't all the reason. Have to go carefully though, I'm a bit nervous of doctors shutting off and labelling you because you might have an opinion on what's wrong.
I'll look into all the brilliant ideas I've read here. It's so liberating to be able to talk about it at last.
Bridge of sighs (I join the sympathy givers)
Thank you Tigger123 and Bridge of Sighs for your replies. I agree this LS forum is a lifesaver and maybe because of it the medical profession might get more informed. They are already discovering that LS is more common than they thought.
As well as having an under-active thyroid, I believe too many anti-biotics may cause problems with immunity too. At the same time as developing LS, I also started getting warts on my arms which are also a result of this.
Tiggy 123 - Did your daughter get LS at the age of 4 because of the stress? It must have been terrible for you both, but luckily children usually grow out of it. I find stress and drinking coffee definitely makes things worse.What was the spray lotion you were given Bridge of Sighs? Sounds good. By the way, I mentioned that I had a great result with Crisco, but I add a few drops of tea tree oil to the little handbag size pot I decant it to which keeps everything sweet and makes you feel deliciously cool too (not too much of course!)
Now that Spring is finally here, I can't wait to get into lighter clothes, can you?
Annieflipflop
Hello Annieflipflop. I don't think my daughter was particularly stressed at 4. I didn't make it clear in my earlier post that there was no question of abuse, it was our old GP who referred her to the clinic because he had never come across LS in children and didn't even know it could happen. She had a couple of bouts over a year and then it cleared up. She's 9 now. Needless to say, as she gets older I'll make sure she knows to keep an eye on herself.
Having discovered this forum I've started looking round others (it feels as if I've broken a barrier by being able to admit it's happening to me, and realising that I'm not alone). Everywhere there's a collection of women there seems to be an LS discussion going on somewhere.
Hmm... clothes. Having spent most of my adult life wedded to jeans, for the last 4 or 5 years I've just found them too painful and had to reinvent my wardrobe. I was really down for quite a while, for lots of reasons, and just hid in baggy tracksuits, but last year I reinvented myself sartorially and its been great fun working out who I am in the clothes department (mostly from charity shops). I find that as long as I wear cotton underwear I'm fine with leggings and a skirt or dress over. That stops any rubbing without me having to get my legs out and all the pfaff that involves. As I have a big dog who needs a lot of excercise, the cold weather was a challenge, but the very warmest thing is a long skirt and leggings. With a warm pair of boots I was snugger and more comfortable then I ever was in jeans. I wear a short skirt in the rain because you dry out quicker. Result! comfort, economy and better dressed than I ever was pre-LS!
So there are things to be positive about, even small ones.
Bridge of Sighs
Hi . I've just been diagnosed with lichen sclerosis after my gp referred me thinking I had cancer! Thank God it wasn't! I've found the posts here so helpful, thankyou all so much. Seeing my gp next week about steroids. Fingers crossed they work for me.
Will speak to you all after I've been.
Good luck next week, hope they help and that things start to get better for you very soon.
Hi curlytop and Bridge of Sighs. For curlytop, how are you getting on with steroids. Did your gp start you on dermovate? I remember when I first used this cream and what a difference it has made. The LS never seems to go away for more than a few days, in fact the moment I stop using it things start to flare up again. For Bridge of Sighs, you must be finding it easier to dress comfortably now that the weather has started to improve, sort of!!!!!! I have bought a few long skirts, which I will be wearing when Summer eventually decides to arrive! Take care, Horses
Hi Horses. The Dermovate made it worse! I've now been given canestan cream and it keeps the itching and soreness at bay, so long as I keep using every day. My GP says it is ok to do that, so it's 'grin and bear it'. As LS isn't curable, it'll do until they come up with something else. Thanks for your post. Curlytop.
Hi all - just to answer Annie flipflop I have recently been diagnosed with LS - I am 52 with an underactive thyroid for the last five years. There is a link as a high percentage of people with LS have thyroid problems.
Thank you all - this site is so helpful as I'm pretty devastated at the moment. xx
Hi Ladies, hope your all coping o.k. in this glorious weather we've got at the moment? I have recently been diagnosed with LS with in the last month.
DLB129....I find your comments about thyroid problems very interesting, it has certainly now prompted me to go back to my Doctor for a blood test. ( I have an appointment booked for next week) My reasons for this is, even in this hot weather (which I love) my feet are as cold as ice, my hairdresser is concerned about my volume of hair loss over the last year, & has kept nagging me to see the Doctor about it. (She's been my hairdresser for 10 years). I have trouble swallowing food & drink's....I have to gulp them down, very uncomfortable. I constantly feel tired, I do work long hours because of my job & have to get up at 5.00 a.m., but if I don't have a nap thru' the day, I would literally just fall asleep when I'm stopped. I constantly have a feeling of a lump stuck in my throat, I suffer with anxiety which I take medication for. So basically I think I'm showing quite a few of the classic symptoms of a thyroid condition.
So I'm hoping that with a blood test etc, it may throw a different light on to things. So I will keep you posted how things go next week. T xx
Hi LS sufferer,
I wondered too if I had a problem with thyroid and had it checked out, but all is well thank goodness. I have enough to cope with at the moment. My hair is falling out though. Can it be the change in weather, or does that sound crazy? Sorry you are so tired, rest as much as you can and know that we are all thinking of you.
Horses
Curlytop mentions Canestan. Before I was diagnosed with LS I self treated with 'Canestan for a few years as I thought I just kept getting thrush every few months. When I mentioned to my GP that I kept getting thrush my GP examined me and referred me to a Vulval Dermatologist who confirmed my GP's diagnosis of LS. I was told that the Canestan was only treating the symptoms. It wasn't thrush I had, it was LS. Canestan Cream did nothing to stop the physical changes brought on by the LS.It only stopped the itching and soreness. So before any more physical changes developed I was put on a steroid cream called Nerisone Oily Cream which is for use every time I get a flare up of LS. To help the LS rash I have to bathe that area with Oilatum Gel, nothing else. It is best to wear white only cotton knickers, non-bio soap powder only to wash said knickers and Epaderm to keep the area from getting too dry whilst at the same time protecting the area. LS can affect other areas of the body but mine is mostly restricted to one area..hence the referral to a Consultant Vulval Dermatologist. I have to have a check up once a year by the Consultant Vulval Dermatologist as LS in that area can cause all sorts of physical changes and problems. I also have to self examine and report any changes immediately. Canestan for thrush yes and to stop the itching and burning yes.....ie treating the symptoms but not for treating LS surely. Canestan treats the symptoms of the LS but not the LS itself. I know that LS isn't curable but it is treatable and one can almost totally stop any symptoms ever happening by adhering to the advice and lotions and potions from a Vulval Dermatologist. I have only had one flare up in the couple of years I've been seeing my consultant due to all the preventative stuff and even then I only had to use the Nerisone Oily Cream for two nights to stop the flare up. Tigger123.
Hi tigger 123,
Just read your message and agree that Canestan doesn't help LS, in fact in my case it just made things worse, but once I found out I had LS I stopped treating so-called thrush, which by then was very fierce indeed. You are so lucky only to have a flare up once; I get them very frequently and have to rely on dermovate to calm things down Can I ask how long you have had LS? I haven't heard of Oilatum gel, but use the Oilatum shampoo and Oilatum soap for washing my face!
Horses
Hi Horses
thank you for responding re the Canestan. I've had LS diagnosed for 2yrs but suffered for about three years prior to this. My consultant prescribed the Oilatum Gel amongst the other things. It did become hard for my chemist to get for a while earlier this year (out of stock at manufacturer for 3 months) and he gave me an alternative soap free lotion (QV?...something or other with just letters for a name) and my skin felt like it was on fire...I washed it off very quickly !! Thankfully I had two spare tubes of Oilatum Gel stashed away. Anyway, my consultant and I now have my LS very much under control but I know that when I didn't follow everything on the advice sheet the Vulval Dermatologist gave me and became lakadaisical about using all the lotions and potions..that's when I had a flare up. I have to use something which resembles vaseline after every visit to the toilet. I did find that after a few days I got a bit sore so I now do it on alternate days. I don't bother if I'm out and about but whilst at home I do use it and I really think this helps keep flare ups at bay together with the Oilatum Gel for washing 'down there' !.
tigger123
Morning Ladies, Hope you all had a good night's sleep?? I can't thank you all enough for your advice & support, it is such a help to us "newbies" .
Horses, you mentioned about your hair falling out also & possibly the weather, Mine has been like it since last year even through the winter months. I just put it down to going through the change (I'm 46) but it's because my hairdresser was fairly concerned about it that it's pricked my conscience, but i'll get it checked out in case, I have always had really thick wavy hair & it's thinned so much this last year it's like fine fluffy baby hair now. A real dramatic change, I had noticed it but just not realised how bad, I looked at a photo from a couple of years ago & it was like "OMG" !!!! so I think it's worth getting it checked, so I will keep you posted,
Keep up the good work ladies, this site & your post's has been a real lifeline for me this last few weeks, especially this last week as I've felt so down about it, but it really has lifted me & i'm feeling so much more positive about things again now 
Thank you all. T xx
Hi tigger,
I am very envious that you have an advice sheet, which is just what I need. I am listening to what people on this forum are suggesting, which so far has been very helpful. My dermatologist has been very helpful, but an advice sheet with instructions would have been perfect for me. I must be doing something wrong, as I have flare-ups very regularly. Also, this time of year, there are a lot of summer parties going on with, of course, wine. Just one glass seems to have a really bad effect on the LS. I have always had a very sweet tooth, which also is not helpful. Do you have a rigid diet and stick to it? I do all the washing and moisturising, so it cannot be that!
Hi "T"
Good night's sleep?? No way! It was so hot last night and I woke up about 3 am and that was the end of my night's sleep!!
You might need to talk to someone about the hair loss, as possibly something can be done about it. I am trying to convince myself that the fact my hair is falling out is just lack of sleep and a change in the climate!! Trying to be optimistic in other words!
I find this site is a real boon as well. When I first was diagnosed with LS
Sorry, I got cut off there!! I was going tyo say when I was first diagnosed with LS, I felt my world was tumbling around me, but I am getting more used to the idea now and, selfishly, it is so nice to know there are others in the same boat.
Keep cheerful and keep cool!!
W
Hello
I know that world tumbling around me feeling, I think it's pretty common. LS can have huge physical, psychological and social impacts, and it's very easy to feel isolated isn't it. It's not that I'm not sympathetic but when someone moans at me about how life changing their carpal tunnel syndrome (or similar) is and I get a blow by blow description of their symptoms I glaze over. I can hardly reciprocate can I? I can imagine a very embarrassed swift exit! It's not something you can talk about except with other sufferers and that's really difficult.
In fact there was a mum in my NCT group who was diagnosed first with Herpes and then changed to genital exczema, thinking back I wonder if it was LS. We lost touch. If you are reading this, you'll know who you are, and I am a fellow sufferer too!
I get a lot of advice from a website called comfyskin, specifically set up by an LS sufferer. It's been really helpful in the light of my GP not really understanding the condition. Everyone posts what their specialists say, but there's a basic routine and set of products the moderator lists out clearly with a how and when. I've found it really helpful. Especially the advice not to be afraid of the steroid - it is your friend! it has made a huge difference to me. My doc said 1 month then try to reduce it. When I finally persuaded her to refer me the specialist said you have to use it daily for 6 months to stop the progression.
Gotta go, sorry, time's run away with me. Will come back tomorrow.
Good luck all. I'll keep visiting now that I've remembered my password!
Enjoy the sunshine
Hello all - sorry I feel I've been out of the loop - I've been enjoying having my daughter home for a week - it's helped diffuse the tension so a welcome relief.
Anyway - enough of that. There is so much info on here - thank you all!
LS sufferer (T?) - you should definitely get your thyroid checked. Mine started as Graves Disease (extremely over-active thyroid) about five years ago - sweating, weight loss, sleeplessness, goitre, then the thyroid became under-active after radioactive iodine treatment which led to weight gain, sleepiness, lethargy, hair loss and all the other joys an autoimmune condition brings - culminating in this recent LS diagnosis. I am so lucky I have an excellent GP but wish I'd gone to her and insisted in an examination when I first started having problems over a year ago instead of continually treating it as thrush.
Tigger123 - is there anyway we can access on line the help sheet you got from the Vulval Dermatologist?
I have paid to see a consultant and basically he has told me to use the dermovate whenever I need it, to use Sylk lube for sex (fat chance of that atm) and to be vigilant - checking it.
Mustn't use any soap, shampoo etc in shower -is there anything out there which is soap free as a shower gel?
I might need to have an episiotomy type op in six months urgh but I'm hoping not. However, marital bliss is non existent until I can try to get the LS under control - sigh - wish me luck ladies! !
Take care all - thank you for this - and best of luck to those who have doc appts soon - keep us posted.
DLB xx