Feeling Hopeless

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I’m 70 years old. For the past 6 years I’ve had vaginal dryness - on and off. I’ve used vagifem and numerous other hormonal creams including compounded creams. Nothing really helps 

At my last visit a month ago my urogynocologist told me I have LS. She worded it by saying you have a skin disease. She didn’t show me where I have it and I was so taken aback I didn’t ask her! I check myself regularly and don’t see any white patches. I do have some itchiness 

She prescribed clobestol for 6 weeks 2x daily and then tapering off. It’s been 2 weeks and I still have burning and itchiness,though not all day and rarely at night. The doctor didn’t do a biopsy and this has been wondering if I have LS. I go see her again in 2 weeks so I’ll be sure to ask questions. This is very confusing for me. I’m trying to find a dermotologist who specializes in vulvar diseases but it’s been very difficult . Looking at pictures on the internet is scaring me as well.  I think when you have bad discomfort in the vagina it really takes a toll on you

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  • Posted

    Hi there I have LS and I don't get white patches but get red soreness and some itching 

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    • Posted

      Do you have burning as well?  What are you using for your LS?  When I looked at images on line I say to myself. I don’t have this or that, but everyone is different. Did you have a biopsy before your diagnosis?
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    • Posted

      HI yes I had two biopsys done before diagnosis of LS im using clob for it but find it a bit harsh to be honest 
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  • Posted

    I am almost 70.  Diagnosed with LS only 4 months ago.  I keep telling ladies here to use Australian Dream cream.  It is for arthritis, but it works great for LS.  Doesn't burn or smell or anything.  And it really helps the itching and irritation.  My labia are actually getting longer.  They had shrunk to just nubs.  I use clobetasol only once in awhile for maybe one or two days, once a day.  That's if I have over done it with my yard work in the heat of Texas and need to calm things down faster.  Otherwise I just use the Australian Dream cream once or twice a day.  I order mine from amazon.  I also use a prescription Est-ring at the lowest dose.  Without that I develop hypotropic urethritis which makes me feel like I have a bladder infection.  Besides, a higher estrogen helps the LS. 

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    • Posted

      Thanks ladies for your replies. I too find the clob harsh. I have  the cream and the ointment. U can really drive yourself crazy with all the different remedies that people tried  I’m quite sensitive so trying to find something gentle for LS. Don’t think they’re such an animal! 

      I live in canada  can only order from amazon canada. I’ll check up on the cream Rosie mentioned. Most importantly I’ll ask my dr in 2 weeks how she came to diagnose me with LS without biopsy - not that I want one, but still.  Estrogen I need for dry thinning tissues. I’m having problems because once in awhile I find a piece of melted tablet stuck on side of vagina!  Anyone else experience this?  Also my reading about disappearing labia etc is freaking me out 

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  • Posted

    arlee--

    I think it's a good idea to have another discussion with your doctor as to why she thought LS versus age-related vaginal atrophy.  In all of my reading, the two issues can very closely resemble one another in looks and symptoms.  At age 70, I would think it odd that you are JUST NOW getting diagnosed with this when you haven't had longer-term issues.  Yes, I know that LS can jump start at menopause but I'm assuming you are 15 years post menopausal now?  Didn't just start right?

    Vaginal atrophy due to lack of estrogen can also cause the labia and other vulval tissue to disappear and fuse.  I would just like to understand why your doctor quickly came to the LS diagnosis.

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    • Posted

      The LS diagnosis is in addition to vaginal atroohy. Been in m menopause  since 50. No problems with flushes etc. It’s since 2011 that the burning started. I was recently free of any symptoms for 8-9 months. This past June 30th it started with a bang  I definitely will ask dr why she diagnosed LS. I had to ask her right then and there. I was kind of taken aback 

      Right now my confidence in her isn’t very high. I’ll see in 2 weeks. I had a great Gyno but she retired. This one is a urogyno who’s younger than my daughter. I also have a bladder that in descent as dr says. 

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    • Posted

      I would use a steroid cream once or twice a week. I have used it so much over the past 30 years that my skin is so thin it just tears. No one told me not to use it so often. Since being on this forum I have found other solutions that have helped me greatly to cope. I stopped the steroid cream about a year ago and that is when I started to fuse. So, gone back to it but just a couple of times a week.
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    • Posted

      Hi there I wonder if you have read Professor Goldsteins lecture which you can access from this site. It explains that LS is a skin thickening condition, hence the fusing. The steroid is vital to slow the progress of fusing. I regret that for a number of years I was very sparing using it. I managed to keep the soreness and itch down, but the fusing has increased substantially. All this before I got round to watching Prof. Goldstein!!
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    • Posted

      Hi Anne

      Yes I realized that I was doing more harm to myself by cutting out the steroid cream. It is thanks to the ladies on this forum that have got me using my steroid cream again. I cut it out for a year and started fusing.... after not fusing for thirty years!! At least now I don't have the itch anymore thanks to the mixture I use of Organic Castor Oil and Essence oils.... also thanks to this forum

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  • Posted

    Hi I was diagnosed just visually. Because my GP would see the beginning of fusing. I just had the soreness and

    itch. This was 4 years ago I was sparing with the Clob.

    which I now regret as although the soreness and itch is mainly under control, I have a lot of fusing. So I would recommend Sticking with the steroid. Good luck.

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    • Posted

      That’s what I have. Soreness and itch - not horribly itch but it’s annoying when I get it  are you using the ointment? 

      It’s frightening to think that it may can cancer

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    • Posted

      Hi Arlee, I have a small long term sore which was meant to be biopsied in June, but he forgot

      where he was supposed to take it from! Took it

      well away for the problem and got a diagnosis of Congestion which doesn't mean anything.

      Before I saw him the GP thought that it was VIN which is a precancerous condition.

      Gyni thinks it is not suspicious and has been

      seeing me every 2months. It is getting bigger

      and quite sore. I see him next week so will see what happens then!.

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    • Posted

      What does congestion mean exactly?  It would be good to get a definite diagnosis. I feel like I’m in limbo  dr didn’t explain anything to me about LS only saying u have a skin disease -LS. I do my own research - sometimes not a good thing.  I will discuss it with her next week. 

      Are you putting any medicated cream on your sore?   

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    • Posted

      Hi ann67814 I was just reading your post and the part you said about a dire area I had the same happen to me my doctor sent me to see a dermatologist she took two biopsys at different times because I had sore that wasn't getting any better but not the sore but that I was telling her about and the last time I was seen by her she said it looked much better then  Before but to me it looked the same and still felt sore Im seeing her again tomorrow about the sore hopefully she will have some answers as to why it's still sore I think it really needs a biopsy but must say  it is will be painful afterwords it's on the inner lips the side of the urethra that skins very delicate there has you or anyone else on here had a biopsy done in there 

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    • Posted

      Hi Gillian, Thanks for reply, it is just frustrating isn't it. I am worried that I am going to have sore places which become enclosed as fusing seems to be progressing and where the front labia have formed a hood there appears to be

      Inflammation on the edge which seems to disappear into the enclosed area. I feel that I need to just get on with life. I am lucky not to have had this as a young woman, that seems so much worse!

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    • Posted

      The sore I had for nearly a year disappeared in 3 weeks when i started to use an estrogen cream. I think it was just a tear in my skin which is so thin. I have been using the cream every night but now I have been told to use it 3 times a week. Before the estrogen cream I was told to use a baby cream called Desitin for 3 months. The lesion just got bigger and bigger so the baby cream didn't help.

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    • Posted

      HI chick did you use the  estrogen cream on the outside because I have a sore spot that's been there for at least a year and THe clob just makes it burn more 

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    • Posted

      Hi gillian

      The cream is inserted into the vagina and then it just eventually leaks out so it would go everywhere I should imagine. I suppose you could take a bit and rub it on the sore on the outside.

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    • Posted

      what did your gynie say about that sore spot that has been there for a year? You must get it checked out straight away if you haven't done so already. If the estrogen cream doesn't help and you have tried something like Desitin or Fissan Paste (both baby creams) for at least 3 months then you might have to have it cut out and sent to the lab.

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    • Posted

      by the way, I have been on this forum for a few months now and I "recognize" all the ladies that are chatting, I just decided to change my nickname. I was "Jan"

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    • Posted

      HI chicks my dermatologist said it's just a flare up and if looked ok to her but I don't think it looks good and it never goes away completely always feel sore and uncomfortable can't stand anything against it not even the softest loose fit underwear 

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    • Posted

      Hi ann, the sore is likely LS, but putting clob on it will just make it worse, it is too strong for that.   I would try putting a tiny bit of Desitin cream on it for a couple of days or so and then try to dry it out, by bathing frequently and then dusting it with something like cornflour..it sounds weird but it can work.
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    • Posted

      Hi Gillian

      Hmmmm. I wouldn't leave a sore that doesn't get better. If the Desitin cream doesn't start to work after a month or an estrogen cream (which is what fixed mine) I would definitely want to do something about it.

      Chicks

       

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    • Posted

      I agree with you, a sore should only last maximum a month I would have thought, and even then I think that's a long time.  I will say that putting Clob on these makes them worse in my opinion, and so you have to try other methods..using a hairdryer carefully on the affected area after bathing is a good idea, its best to try to dry it out.

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    • Posted

      Hi Guppy, I started looking for help with the sore after a few weeks (March) saw Gyni in April had 1st biopsy in June (from wrong place) Have seen him every 2 months since, and now he is going to do another biopsy. He is fairly sure that it is not malignant but I will be pleased to have a definite answer. I did have a spell using the Clob on the twice a day then reducing routine and the inflammation of the sore was less but as soon as I used it less the I inflammation returned so back to square one.Just another frustration!
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