diagnosed in Apr this year

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Hello was diagnosed with LS in Apr. It came as a shock that there is no cure and could turn cancerous. The worrying thing about it is that doctors know very little about it.I Have been using the 1% hydrocortisone cream but it's seemed to be having little effect. The flare ups were everyday and thickening of the skin was beginning to occur.I was getting stessed out most days so visited a local Herbalist. She is treating two other women with the condition. She prescribed Zinc , Probiotics (for most of my twenties i spent on antibiotics due to recurring kidney infections, this we now know destroys good bacteria in the gut ), Vitamin C and fish oil.It has been 3 weeks now and the itching has virtually stopped and thickening of the skin is reducing. I feel normal again.

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  • Posted

    Good to learn what's working for you.  My experience is, it is not 'terminal' and it is within our power to monitor and manage our condition (getting educated with informed participants on this forum such as you sharing what is working for you).  We then use these first-hand information to experiment on our own - and it is working!

    THANK YOU EVERY BODY, THANK YOU, ESPECIALLY our fabulous, indomitable WEB MANAGER who makes sure that this group delivers valuable and relevant information.  Happy holidays :-)))

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  • Posted

    Thank you Phil. I don't know what dosages you were recommended to take nor where to get the pro-biotics,   but  I would like to try this.

    Might I say also I am surprised you were not prescribed clobetsol 0.05, called dermovate in the UK, a far stronger steroid. How awful you have suffered the itching so long a  time.

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    • Posted

      Hi Joodie yes I have wondered why I was not prescribed Clobetsol I will aask my doctor, she probably has a good reason. Think I may be ok with out the extra strength (fingers crossed).Will have to see.
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    • Posted

      Hi joodie forgot to say the pobiotics are in capsule form and i take two a day one in the morning and one in the evening. They are called Optibac Probiotics. The Herbalist also mixed a Vit E cream with Chickweed and essential oils to apply to the area to help keep it elastic and keep it pliable.

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  • Posted

    Would like to know what kind of probiotics you use?  Zinc? In what form?  (Like to learn from others.)

    I'm taking fish oil and vit C as well.  

    Great that you feel so much better, with relatively simple methods.  

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    • Posted

      Hi Hanny yes the probiotics I use are in capsule form and are called Optibac Probiotics. The zinc is in tablet form 15 mg. I take 1 of each of these a day with breakfast and then in the evening the same also for the fish oil and vit C. Yes feeling so much better. I have always gone with Herbalists for various ailments in the past because I am not always happy to use chemicals. I think there is a place for alternative medicine.
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    • Posted

      Thanks Phil.  Gives an idea.  Yes, I too think that alternative medicine can add to the whole of healing.  Wish they would work together.  I work with both, conventional and alternative/funktional medicine world.  (no idea why the letter type changed to cursive)  
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  • Posted

    My dermatologist said to think of it like diabetes. You will have it for the rest of your life, but it's a case of keeping it monitored and under control then you can get on with your life. That helped me, linking it to something else that I understood (though don't have) made it feel less scary.

    I go to a wonderful homeopath who has done miracles for me. There are also many threads linking flares with diet. Reduce sugar and alcohol (wrong time of year to be saying this!) some people stay off coffee. I gave it up, mostly, because it was giving me headaches but it's possibly helped my LS too.

    The dermovate (Clob) is important, because even if you reduce flares, you need to stop it in its tracks and the strong steroid does that. Can you get a referral to a vulval dermatologist? I had a row with my GP when she insisted that she could treat it. I istuck to my guns and when I got to the specialist, it turned out that the GP didn't know as much as she thought she did. Hats off to her for even knowing about it though!

    Ideally if you can get a referral to a specialist they should have you on 6 monthly checkups, mostly for peace of mind, once you've got it under control the cancer risk is quite low, but you do need to have the expert overview.

    Don't get isolated, it's a hard one to discuss with friends, but there's always this site which is wonderful. Sorry you've joined us, but you won't be alone here.

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    • Posted

      Hi,  Maybe we should have a discussion after Christmas to see if many of us have flare ups induced by our diets and alcohol consumption.  I think this would be a good time to ascertain if diet does cause us problems.  I would imagine lots of us will be eating a lot more sweet and acidic foods, or drinking more alcohol than normal so if they are a cause then we should all be noticing an increase in symptoms. 
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    • Posted

      Chrisy, I am not planning to change my diet over the christmas season.  The risk is not worth the little bit of joy.  I stick to what I can and can not eat.  

      Learned the hard way.  Now when I look at certain foods I think of the pain and discomfort later.  Remember that 'taste' is only a few inches long.

      Enjoy the Holidays and try to avoid what could trigger misery.  

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    • Posted

      Hi Bridge

      yes I have seen a vulva dermatologist and have to have a 6 monthly check up.I too have given up coffee and drink very little anyway. I have also greatly reduced sugar but thats hard..The Herbalist also gave me a vitimin e cream which she mixed with chickweed and essential oils which i apply to keep the area as she put it elastic , the chickweed helps to heal also so alround good results.Thankyou for your help it is good to know that I am not alone.

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  • Posted

    Phil, You have been fortunate in finding something that works for you.   We are all different however, and some people have this condition far more aggresively than others..I would be thankful and hope it doesnt flare up again, stick with what you are doing as its obviously working...with regards to Cancer, I never give that much thought as I think from what I have read it is very rare, and I believe that usually only happens when people stop visiting their doctors regularly.
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    • Posted

      In addition - keep checking yourself regularly.  It's your best defense.  I take pictures, so I have something to compare.  If it does look suspicious you can immediately contact your doctor.  
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    • Posted

      Its strange that even with our own bodies we can miss things..when I first realised something was not quite right with my undercarriage, I had to really really look before I realised what it was, so yep photos are a good idea actually.
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    • Posted

      Hi Guppy yes you are right about the cancer bit being quite rare but I can't help worrying about tit
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    • Posted

      I can totally understand your worry.  Having a lot of cancer in my family history I watch like a hawk and still am not sure.  Regular check-ups are very important therefore.  And then I have to hope that the doctor also knows what it is we're looking for.  It's such a tiny area.  Do they see all there is to see, I then wonder.  

      But mostly I keep a positive head up.  I can not think of this possibility all the time.  Just keep a close eye on things, it's your best defense, I think.

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    • Posted

      Yes you are right the best thing to do is keep checking it. My doctor suggested that i take a photo periodically. I have not done it yet but I will do.

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    • Posted

      PLEASE do not use phones to take your photos - or Ipads - the hacking world is getting greater - use your own camera  that has no link to the internet. I may sound paranoid - I have a son working in  he I.T world and he wont put ANY personal details out on the web if he can help it - Photos of our undercarriages would be a godsend for perverts - Take Care

      Sue

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    • Posted

      I know your right, good point.  I would never take a photo because I have now looked at my Vjay so many times recently that it is firmly imprinted on my mind ha ha!... but for people new to this condition I think using a camera can be helpful.
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