Diagnosis

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Please can anyone advise me about this disease. Diagnosed yesterday , total devastation cannot get my head around it at all or stop crying . My HP is wonderful and says it can be managed . Please please can someone tell me that there is a way forward . I also suffer with anxiety and that is through the roof at the moment . There must be something positive. Thank you xxxx

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  • Posted

    Hi Jane, you have gotten yourself to the right place.  There are so many knowledgeable, kind, sharing people on this site, and they will help you.  Anxiety is terrible and I can see how this diagnosis would be exacerbating it.  Especially if you are googling pictures, etc..  You don’t say how old you are or how bad your situation is, but maybe some general information might help you now.  First of all, there is hope... some people who have had LS for a long time have found ways to turn it around.  They use diet, meds, and lifestyle changes.  In general, you have to avoid perfumes and soaps in the area, and stay clean (water or water and a little baking soda to clean), and dry (pat, don’t wipe).  Then you have to use whatever cream your doc gives you (usually a steroid) and look at the video in the “start here” section of this website for some good directions on using it properly.  Most docs don’t give good directions.  You will find some good advice on diet and supplements.  I just started taking this Vitamin D3 supplement and although this is not a scientific experiment and there are other factors, I really think it is helping things to improve.  People have reported on here that their skin starts to unfuse and it sounds hard to believe but after taking the Vitamin D3 for a while, I think that is happening to me.  Maybe there are other factors, but I eat tons of sugar and dairy, etc., and so my diet doesn’t help me but my vj looks better now than a couple months ago.  Also, consider the connection between your anxiety and the LS.  Anxiety is usually associated with depression, and some think depression is related to an autoimmune process.  So the LS might be an autoimmune indicator on the outside that give you a barometer of how things are going on the inside of your body.  It might be the wake-up call that tells you to grab the bull by the horns and tackle the autoimmune process in general.  I’m so sorry you are going through this.  I think everyone on this site can sympathize with how you feel, and it still freaks us out to have it.  But the support here is amazing and you can get through this.  Hang in there.
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    • Posted

      Hi pat , thank you so much for your reply . I am 57 years old and just gone through the menopause . We used to laughter at my “curtains’ and I haven’t even left ones for a while but did this morning . The left hand side has only got a tiny part left and the right is fuller , still there but much smaller , having said that I know that you can “ shrink “ a bit anyway so don’t know how much is gone or shrinkage . I am on high blood pressure tablets , have been for the past twenty years but am losing weight . Any advice you can give me is so helpful . How long have you been taking vitamin D3? Xxx
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    • Posted

      Hi, you are welcome!  I started taking the Liposomal Vitamin D3 5,000 IU’s about 2 months ago.  I also started taking Vitamin C at the same time,(both are the Mercola brand) and about a month ago I added in turmeric.  I’m pretty bad about my diet and everything, but I have had the platelet rich plasma injections and one hormone pellet last year (that was injected into my butt cheek and contained some estrogen and a little testosterone.  That also seemed to help, but I just saw my friend who has been doing that regularly and her voice has lowered, so I’m a little wary now.  There will be a lot to learn, so one thing at a time!

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  • Posted

    Hi Jane

    Please do not despair! I put my LS into remission for years with just a change of diet - mainly no sugar. Unfortunately it is playing up a bit again, but i have hope as I have done it before. Also there are medical procedures that are on offer now - the Mona Lisa Touch, stem cell treatment etc. It doesn't have to be a life sentence, just an annoying one until you find your path. XXX

     

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    • Posted

      Thank you , I am already trying to stay on a low sugar diet , is there any other advice you can give . I have started  using vaseline s the time and really working in my pelvic floor so I can get rid of the panty liners , I was going to ask my GP as I have strange itchy spots on the inside of my arms and feet , googling this it says it me be plana? I dont know how they would tell . How long does it take you to stop feeling like you have been hit with a sledge hammer ? Xxx
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    • Posted

      Hi Jane

      Well I guess it takes as long as you take to start going into remission. You could try giving up gluten and dairy. That’s what I did initially. I also took MSM. The borox thing doesn’t really work for me but castor oil and lavender oil does help with the itch. We are all different and have different triggers. I’m back on a gluten free, very low dairy diet at the mo. There is also a thought about autoimmune diseases being caused by a “leaky gut”. Google that. So I’m trying to heal mine also (as I have 2 other auto immune diseases to deal with!). Good luck!!!!

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    • Posted

      Dear Claire

      Thank you so much, being vegetarian I suppose the next step is dairy free, I will look up leaky gut and try and look, at that, I think it is just such a shock, xxxx

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    • Posted

      Well understandably it is a shock but as long as you are pro-active I believe you will definitely get it under control and not the other way around.  I try to look at it that it makes you look at your life and food choices and you have to be "good".  It can be a bit dull not having that lump of cake, but in in the long run, its not only better for your LS, its better for your all round health.  (Im trying to put a positive spin on it !!!!) X

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    • Posted

      Thank you Claire,

      ​All of you for your utmost support,  I am beginning to calm down now and realise that it may not be the death sentence I thought it was.

      By the way , does anyone still have the odd glass of wine????  Just chancing my arm lol x

      ​Thank you again

      Janexx

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    • Posted

      Hi Jane,

      Ive had stem cell traetment in Genoa italy with Dr C. It was amazing as were the results. Research it and see for yourself if its an option.

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    • Posted

      Thank you so much I will check it out . How long were you there and was it expensive ? How long have you had LS ? Sorry so many questions but it doesn’t give you email addresses on here to ask xxxxx thank you xxxx
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    • Posted

      I do, maybe a glass once or twice a week.and still I'm very slowly seeing positive changes with borax etc. Maybe they'd be quicker without, but I believe that pleasure is an important part of healing too - positive mindset etc...

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  • Posted

    Stressing about it will not help you.....the positive side...it can be controlled with treatment, steroid cream and a barrier cream or ointment. Goes away and at times can flare up again....but a change in diet and lifestyle could help you.
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    • Posted

      I used Betnovate cream for almost three months when I was first diagnosed, twice a day, rinsed with bicarbonate of soda mixed into water after every visit to the loo, stopped using toilet paper, stopped having long baths....also use a barrier ointment Hydromol to keep the area moist at all times.

      Now I use the steroid cream twice a week....to keep control of LS and prevent flares. I do get flares but I do not stress about it anymore, know what to do. Diet is crucial....I cut sugar, wheat out of my diet, I found ways to relax and control my stress levels, I do yoga, pilates, meditate. I also take vitamins and natural supplements.

      LS is an autoimmune disease...usually accompanies other autoimmune diseases, no processed food either, limit the amount of chemicals you ingest...aim for organic instead.

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    • Posted

      Thank you Danni , I am a vegetarian , so now need to go gluten-free as well . I think it’s all such a shock as it’s what makes you femanine . I drink  k goats milk , but have to confess I am a cheese aholic . I also like a glass of wine . How long do your flare ups last? Xx
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    • Posted

      A flare can last from two days to several weeks....depends. It comes up triggered by dryness, stress, too much sugar....not doing your routine properly, LS keeps you on your toes. Goats milk and cheese have lower levels of lactose compared with cow's milk and cheese. 

      It is hard, very hard to cope when you are first diagnosed, but you must persevere and it will get better with time...

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