Recently diagnosed and increasingly scared

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Hey there everyone. I was diagnosed by my gp a couple of weeks ago. Am using the steroid cream nightly after bathing in water and baking soda, using water spray after peeing and moisturising with olive oil/ coconut oil, all thanks to advice gleaned on this incredible forum. The area around my bum is white, so are the insides of my labia, I have no ulcers or tears and not much itching  but it’s all pretty scary down there and although I really I thought I was coping with this diagnosis and the new routine, I am daily becoming more anxious about cancer. I look with a mirror and have no idea what is going on, it all looks so different and weird, that I’m really starting to dread the evenings when I have to put on the steroid cream. So far after 2 weeks, there’s been no improvement of the white patches and my heart is sinking. I’m not sure how long I’ve had this, maybe 6 months, maybe longer and I have this awful growing fear. How quickly does fusing happen, in days, weeks? And when people refer to scarring do they mean the white patches? Are the scarred parts/ white patches where cancer is more likely to occur? I’d be so grateful for any help, I’m just getting more and more confused and upset the more I learn about this condition. 

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  • Posted

    Reading your email. Makes me want to cry. I know exactly how you feel. Tomorrow I will look to see where I am with the disease. Lately having problems around my butt. Not sure if I want to know. Please keep emailing we are here with you. Together we will get through this.
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    • Posted

      Thanks Diana. Means a lot that everyone is so kind,I’m single and haven’t shared this with anyone in person so far xx
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  • Posted

    I have had this around 8 years. Iam 63
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    • Posted

      Hi Diana I have had this condition for more years than I can remember I asked the doctor but they did a swab test of my vulva area and said it was fine but when I asked my male doctor he just said I needed to see a female doc as he wasn,t an expert in womens problems I just feel so let down and am beginning to just apply the dermovate and hope for the best.

       

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    • Posted

      Some woman like male doctors. I don't period. My grandmother and mother talk the solution for womans body have hysterectomy. Went rampant in their generation. My daughter has Andromedryosis and right away they think she should have hysterectomy. The first doctor I had thought I had cancer well I didn't. But never said I had LS. Years later after another biopsy was told I had LS. This is not being smart I know I treated when flares up and other times leave it in God's hands.

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  • Posted

    Do not over clean..your skin needs it's PH balance and natural oils. Steriods will dry the skin so sits baths don't need baking soda every day. Twice a week while on steroids. Then just clean water on other days.

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    • Posted

      I'm in the states. With top tier care.. do you have Cetaphil? My doctor is like Sundays baking soda ( if you want) and daily ok with Cetaphil ..I have such relief since stopping the daily baking soda!

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  • Posted

    Hi ajay, many women are advised by their doc to use the steroid cream morning and night at first (twice a day) for about a week or two and then to use it once a day for about a week or two, and then to use it on alternate days, and so on until the white plaques of skin have gone.  I am not a doctor but I do think you should do the same as you have had no improvement after two weeks.  It is best to use a hand mirror and apply a pearl-sized amount to the area avoiding the healthy skin.  

    The white plaques of skin are not in any way related to cancer or anything like that it is just how Lichen Sclerosus presents itself.  I was fortunate in that the white plaques of skin went quickly after two weeks, but for many it can take a couple of months or more.

    Fusing is tricky in that no one really knows why and when it occurs.  My theory is that it happens mainly when we are sleeping and so to avoid that as much as you can it is best to apply an oil like coconut oil which stops that tacky stickiness from happening which then leads to fusing.  So, it is best to remember to apply that before bed.

    Regarding scarring, in severe cases, scar tissue can form. For example, scar tissue can cover the clitoris which can be painful but really that isn't the norm and so I wouldn't focus on that and as long as you see your doc regularly then you will be fine. 

    The women that have cancer from LS are very rare, and it is usually because they were misdiagnosed for years or didn't visit their doctor at all.

     

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    • Posted

      Hya hun, I’ve been using the cob cream for about 6 weeks the patches aren’t disappearing but in sum areas have increased size wise. Is this Normal? Do the patches vanish with the cream - I’m applying it correctly. 
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    • Posted

      Hi, six weeks is long enough I would have thought to have started to make some changes.  Sometimes women find that they are stuck with the white plaques of skin for a long time, its unfortunate but it happens.  What I would do in your shoes is to try a different approach.  I would stop using the steroid cream for now as it appears to be doing nothing for you. Remember I'm not a doctor, I'm just giving you ideas and suggestions.   Have you tried the borax solution?  Many women swear by that.

      Here is the link..

      Its a long thread, but you will need to read it and then you can give it a try.

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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    • Posted

      Ive sent you a reply and I put in the link for the 'Experiment with Borax" and because of that its gone off to be looked at by the moderator. No doubt it will appear in a day or so..but I basically said  try using Borax there is a thread on this site.

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    • Posted

      Hi hun, thanks for your reply. I was thinking of stopping the cob cream but the only benefit I’ve had is no itching

      I’ve not tried the borax as the itching has stopped. I’ve not had any luck with the dermatologist. Didn’t even examine the area even after requesting him too, have written a complaint regarding that. I’m just in a catch 22 situation. 

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    • Posted

      Hi, No itching is a nice result though..maybe just use it less.  I cant remember exactly but I think the borax clears up the white plaques of skin..Maybe someone that uses it will chime in.
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