New to all this - advice please

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Hello. This is all very new to me and I'd really appreciate some advice from some of you more experienced ladies.

I had never heard of LS until recently. I'd been feeling a bit itchy down below, had a look in the mirror and was horrified to see white patches of skin on my vulva. I immediately started googling, and LS is what came up. I've had the odd bout of low level itching before but assumed it was my shower gel and didn't think much of it, and it never lasted long enough for me to get worried. I do also sometimes get small tears in that area, I have done for years, but, again, didn't really think anything of it. So it all seems to fit with what I've read about LS.

Anyway, I went to see my doctor, and said straight out that I thought it might be LS. She examined me and said she could be 100% sure but she did think it looked likely. She has referred me to a dermatologist and in the meantime has prescribed me betamethasone valerate, which she told me to use for two weeks and then stop.

I've been using the cream for 5 days and it has stopped the itching. But now I'm not sure what to do - should I use the cream exactly as the doctor said, and stop after two weeks? Or should I continue using it? From what I've read you're meant to use it twice a day for at least a month until the symptoms clear up, then drop down to a couple of times a week.

I'm also concerned that the cream might clear up the symptoms and then the dermatologist will think there's nothing wrong.

Help!

Obviuosly I don't WANT to have LS, but I want to make sure that if I DO have it, I'm diagnpsed correctly. What can I do to make sure this happens? Should I push for a biopsy? Or just wait and see what the derm says?

I've been so worried and feeling really tearful and down after looking at horrific images on the internet (I know I shouldn't be looking!).

any advice for me?

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  • Posted

    I understand your tears. I have cried, panicked, been depressed since my diagnosis in June. (I believe I had LS for many years and I'm only 44 now!)

    I am prescribed the same steroid. I was told to use it every day for two weeks then only as needed. (When I start to itch I'm to use it for two days again).

    Also if I have a flareup to go back on for two weeks again I believe. Anyway, I use it about two days a week cause I have itching almost every day, just rarely severe itching. From my experience and what many ladies on here say, plan to use it at least twice a week for always!

    Not sure what to say about your concern about treating it before seeing dermatologist. How soon will you see the dermatologist? My white spots faded very quickly once treated.

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    • Posted

      Thanks for your reply. I'm 36. The thought of having this 'forever' fills me with dread!

      I should be sent an appointment within the next week or so. No idea how long I'll have to wait to be seen though.

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    • Posted

      Topical steroid creams don't work that fast. They work over months and maybe a couple of years.

      I've had it forever (age 22 to 63) but with long periods of remission and lots of great sex and two babies.

      I self diagnosed from pictures a few years before I was finally diagnosed. I was so used to it I just decided it was an aspect of psoriasis, which had never been really helped with topical steroids. But psoriasis comes and goes leaving fresh new skin when it leaves. LS does not act so kindly. It was foolish of me not to read more about LS.

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  • Posted

    DONT LOOK AT THOSE PICS!

    I freaked out but a lady here told me those are neglected cases of old ladies.

    It does get easier but it's a real disappointment and there are days I'm just incredulous that such a horrible disease exists. And yet it could be worse!

    Try to be positive. After I was diagnosed I did an emotional nosedive and my LS spread! I think from my emotional response!

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  • Posted

    Also very beneficial not to use any shower gels, use chemical free laundry detergent for your undies, wear white cotton underwear, (boring), cut sugar from your diet... Cut back on caffeine, and some are greatly helped by a gluten free diet.
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  • Posted

    Joan, I think the images online are worse cases!!  I fall into the category of  people who think a biopsy is not always necessary  if you are showing all the classic signs of Lichen Sclerosus (which you are) a visual diagnosis can often be enough unless of course something looks particularly odd with your undercarriage.  But you must do what you feel is best.  With regard to worrying before you see your dermatologist, could you perhaps take some pics with your camera, download them onto your pc, print some off, and then delete everything?  then you will have something to show him in case they do in fact disappear.

    Once you have got over the initial shock, (which it is) things do get better, but you have to become informed, which it sounds like you are, and then you will be in a  position to ask the right questions when you see your dermatologist, as unfortunately what many women have found is that many doctors, know little about the condition, which is why you yourself have to understand it more.

    Look at the "New to LS" post and scroll down until you get to " webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain"  this is worth watching, with a pad and pen to make notes, it lasts an hour, but this chap seems to be quite well informed with regard to Lichen Sclerosus. 

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    • Posted

      I've just listened to the Dr Goldstein webinar - wow, lots to think about there. Seems like there are a lot of misconceptions with this disease rolleyes What he says about soaking and rubbing in the cream for 90 seconds makes a lot of sense.

      He specifically said it's important to get a biopsy BEFORE starting steroid treatment, as the steroids can make the symptoms go away. So now I'm thinking maybe I should just stop using the steroid cream until I see a dermatologist.

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  • Posted

    Hi Joan

    i understand perfectly how you are feeling.  I have had LS for a year.  On my first visit to Gyno he gave me Clob and said "if that doesn't improve it in two weeks stop" it helped for a while but then got worse and I felt the Clob (Steroid) may have been making things worse so did stop it.  Then he did a biopsy which came back "non-specific inflammation" - so his diagnosis was Vulvodynia and he basically told me to take an anti desires sent and suck it up!  I wasn't happy so went to 2 more specialists including another Gyno and Dermologoist, who said it was classic LS given this and that! (I had no itching and only very few small little white bits, one tear), but terrible burning and soreness, total absorption of inner Labia Minor.  I did find out that if you have been using a steroid and then have a biopsy it is not uncommon to get a negative result.  I had also been trying all sorts of creams and potions which just confused things even more for several months so in the end I just stopped everything to get back to neutral and then got myself a diary and went through a process of elimination.  I do believe now after 5 Specialists giving mixed opinions that mine is LS so I am just treating with steroid when things are uncomfortable and also using Ovestin to help heal the vagina and plump things up.  I am having a mix of good and bad days but I believe the good are more often now.  Stress is a definite contributor for me.  I have a very stressful occupation and I notice when the stress is really on things flare up. 

    My GP felt I got too many opinions but I am pleased I did as it was the only way I could balance out what to do and get their experience of cases.  I am just very lucky I have medical insurance through my work to have been able to do this.  I really feel for some of the ladies on here who are waiting months to get help its just not right!!  I am in NZ and it doesn't seem that we have any specialist here that have a main Interest in LS.  I did find one in the North Island but she wouldn't take on any more cases. 

    It is frustrating but don't give up just keep working through what helps.  The diary was useful for me because I could start to see a pattern from meds, stress and food. Best wishes😀

    PS I would have the biopsy I didn't find it too uncomfortable at all.  I was disappointed it didn't give me a result of knowing it was LS for sure but I think that was because I had had 4 weeks on and off use of steroid.  It also depends what area they take it from - if that area is not active with LS it will not show up.  It's a bloody confusing disease.  

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  • Posted

    LS sucks!!! After my flare up, like I said I swam in the SALTY ocean and now use my clobetasol once or twice a month. Now using the steroid can help shrink your tissue as well, so u only use as a have I have to. My skin will always be white down there and in my armpits too. But when my LS flares it hurts so bad like a inflamed heat rash and I have sat with a fan in between my legs. But once you use it for a month u shouldn't have to so often.
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  • Posted

    Hi Joan, I agree, don't look at the photos. They are obviously very neglected examples, though I would draw the line at saying 'old ladies' as I am old I suppose and mine doesn't look like that. 😀

    I'm newly diagnosed too (15months) but don't have the 'typical' look of LS so never would have diagnosed myself even though I am an avid searcher of everything on line. A biopsy was conclusive and eight months later I had another to check for pre cancer. It's a nuisance but I must have them regularly it seems as my LS comes in the form of concave red lesions.  Still have burning vulval area, have lost architecture but no white areas at all. 

    I would have to say I think a biopsy at least to ascertain the condition would be wise, but that's just my opinion based on my experience.

    I think so many peoples LS manifests in many different ways, it's amazed me how many different treatments and life style changes people have tried,and how these changes have worked to give relief for long periods of time, sometimes years. It's very encouraging. I truly would be lost without these sites! 

    I have read on here several times that having a biopsy while actually being treated with steroids can give a false negative result, others may tell you more about that.

    good luck and it's useless saying don't worry because we all went through that but it really is the most aggravating factor, the stress. 

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  • Posted

    hi Joan,i was dreading having a biopsy,but when i saw the gyny he said there was no need for one as it was obvious LS,he had a student with him and told him to take a good look!(thanks) as he may never come across it again in his medical career!i didn`t know whether to be pleased about that or not.gyny told  me to use dermavate every day for 1 month then once a week from then on for maintenance.i too was worried the symptoms would be hidden before this gyny appt but my GP said to not use anything for 2 weeks before seeing gyny altho it was painful but glad i did cos no biopsy!!god luck to you and hope you don`t have to suffer for much longer,the ladies on here know much more than any of the medical profession!!
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  • Posted

    Great info, thanks. I found out two years ago from the worst primary care physician I have ever had, and he played it off like it was no big deal.  Now, with a different doctor, I'm dealing with the symptoms (itching, a lesion that terrified me!) and the reality that this is something I will need to deal with.  At 56, I don't want to give up on the idea of a sex life!!

    If the lesion doesn't fade in about a week, she's going to biopsy it to rule out (Hopefully) vulvar cancer.  I now know that those of us with LS are at a slightly higher risk of Vulvar cancer.

    I'm trying not to panic!

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    • Posted

      Don't panic, Sabrina. Getting upset only makes a flare-up worse. Let's keep thinking of it as a flare-up. The squamous cell carcinoma that we're a few percent more likely to get (and probably usually when completely neglected) is a slow cancer. My mother has had two good chunks of it removed from her head and neck after having open sores for years. Good as new.

      This lesion is a good reason to have a biopsy. I wouldn't want a biopsy just to diagnose LS if the symptoms are classic – why traumatise tender flesh?

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  • Posted

    Thank you so much for all the replies, they've been really helpful and reassuring. And also makes me feel I'm not so alone in all this.

    I think what I'm going to do, based on what you've all said, is stop using the steroid cream at least a couple of weeks before my dermatologist appointment, and not worry about a biopsy unless I feel like I'm being fobbed off.

    Thanks ladies x

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