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Itching is driving me crazy-questions

Posted , 14 users are following.

sue19838
sue19838

For the last couple of days I have been extremely itchy. The itching is mainly towards the bum and at the vaginal opening. I do 

have a white patch at the vaginal opening but towards bum it is mostly red and feels bumpy. The itching is keeping me awake at night. I take baking soda baths, apply coconut oil and have a cream made up of 3% steroid and canes tan .  I am not on clob. Or Dermovate. So questions

What else can help the itching?

When LS is under control do symptoms stay away for a day, a week, or a month?

I was diagnosed in Oct 2015 and have issues almost everyday since when I have a day when I feel 'normal'. I could sing, fly jump with joy for the relief 

Does clob help the itch?

Does LS spread more if it's not treated?

if it is treated will it stay more in one area

i love this forum. It it the only thing that has kept mr from totally freaking out 

0 likes, 32 replies

32 Replies

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  • nik1974
    nik1974 sue19838

    Posted

    Hi - I got diagnosed in December after a really bad attack ( and previous docs fobbing me off with thrush) got prescribed dermovate and the relief was instant - had couple of flare ups and the steroid cream sorts it instantly - I'm only 42 and convinced my bits have massively shrunk - 1st appointment with a gyno tomorrow - horrible disease
    • poppygc1981
      poppygc1981 nik1974

      Posted

      Hi Nik, I got diagnosed in Dec too. For two years i was fobbed off with Thrush. It makes me mad that there is not more research . Good luck your Gyno. I am just so relieved that the itching has stopped. It was making me crazy. I also take probiotics each day. I noticed when i dont take them tingling starts again. Does any one know of a link between probiotics and LS.
    • hanny32508
      hanny32508 poppygc1981

      Posted

      I too am using probiotics.  It helps to improve my digestive system for sure.  So perhaps there is a link between improving one's digestive system and healing the body from diseases.  
    • sue19838
      sue19838 hanny32508

      Posted

      Hi Hanny and Nik

      Is there a certain type of probiotics to take or will any type work.

    • hanny32508
      hanny32508 sue19838

      Posted

      Hi Sue, I take Kefir and add it into my breakfast. I feel it is beneficial this far, better than the colostrum I was taking earlier. 

      It's a constant search, I find.  But I have the feeling I'm getting somewhere with it.

    • Morrell1951
      Morrell1951 sue19838

      Posted

      I eat naturally fermented sauerkraut some days as well as putting kefir on my oatmeal every morning. This has really improved my digestion over the past couple of months. Hard to say which of the various things we talk about here is most responsible for my relative remission, maybe all.
    • poppygc1981
      poppygc1981 sue19838

      Posted

      Hi Sue i am in Australia i found it hard to get Kefir. I buy probiotics from the chemist. The ones with highest microbiotics. I had candia for years so try and be alkaline too. I am hoping this stops the urine burning my skin. As well as baking soda baths like Morrell has suggested
  • sue19838
    sue19838

    Posted

    Hi nik. Thanks for info. Still waiting for my gyro appt but glad to know about the Dermovate 
    • tuppermom2
      tuppermom2 sue19838

      Posted

      I do like to have them test for yeast if I'm especially itchy. I just had a yeast infection, when I got over that, I was diagnosed with a bacterial infection. sad Now the itching has started back up! Wondering if it's yeast again or LS flare.
  • lee12629
    lee12629 sue19838

    Posted

    Only can tell you what ive been told..dont know if its correct as doctors arent always right. My gyno said sometimes it can go into remission,sometimes it only stays localised to one area,simetimes it might not ever get worse. Only way to diagnose is with a biopsy. I still dont know if i have it as my symptoms arent as bad,no white patch that i can see and i havnt had a biopsy,one thing that helped the itch alot when i had it was over the counter benedril. Also drink lots of water.
  • Jessicat
    Jessicat sue19838

    Posted

    Hi I was diagnosed the same time, but I was told to use dermovate before I was diagnosed, this was so if my symptoms improved my derm could then diagnose me from my improvement. I think the dermovate is the main thing that has helped my itching alongside the coconut oil and baking soda wash.
  • Morrell1951
    Morrell1951 sue19838

    Posted

    I've been on tacrolimus ointment for a year and I hardly have to keep track of my twice a week application (actually, every third day). On the third day I'm starting to get a bit itchy. The same was true when I was on Dermovate. It keeps the inflammation at bay, keeps LS from forming the thick layer of crappy skin cells on the surface that itch, split, blister, etc.

    If I'm burning rather than itching, I suspect yeast and apply just a dab topically of leftover Canestan cream. But I haven't really had that since I gave up sex two years ago.

  • carol501
    carol501 sue19838

    Posted

    Hi. I have LS had it awhile before been diagnosed. The itch was so bad too. Biopsy proved what i had. I remember doctor giving me result and turned to other doctor and said what is LS??? They never heard of it but i was given dermovate and told to use sparingly as its a steroid and wud thin out the skin. Once a day for a first 2 wks then less and less. It stopped itch but i have white patches. Like you i dont no does it spread treated or not, i was just told skin cancer is a possibility with LS. I asked what to watch for and was told cuts that appear from nowhere and not gone after 7 days lumps etc. I keep a regular check. Last week i had a cut so now watching if it will go but i am very nervous worried when it does happen. The cut will be burning me so i use sudocream to cool it. I live in ireland and dont no anyone that has it and cudnt find any support group. Hope this is of help. I believe we shouldnt eat sugar with skin conditions. Carol
    • Morrell1951
      Morrell1951 carol501

      Posted

      Don't get too worried about cuts, a tear is just one sort of symptom of an LS flare-up. In my case using the ointment gradually (two years) thinned the bad LS skin layer so when I tear it's really shallow and heals in one day.

      Last think we need is to be worrying and upset, it's worse for LS than sugar. The cancer LS makes us slightly more likely to get than average is squamous cell carcinoma, which is very slow-moving. Usually you get VIN first (bad cells). As long as we get looked at once or twice a year we can pretty much forget about cancer. The Tear (in my perineum) has been my main LS symptom for 42 years. Doctors aren't much help beyond writing the obvious prescription and checking for bad cells periodically.

      Try bathing or splashing with water with a bit of baking soda in it. Protect your parts from urine with oil, even Vaseline, when you're sore. No tight pants, try not to encase yourself in synthetic fabrics.

      LS sucks, but there are much worse things. We need to stay calm and not pig out on sweets.

  • sue19838
    sue19838

    Posted

    Thanks everyone. We all seem to be in the same boat as far as doctors go. The doctors do not seem to think it is much if an issue. I am trying to cut out sugar as much as I can and I do think that helps. When I told the doctor I was going to cut back sugar he laughed and said that doesn't work. 

    I am in Canada. 

    I am not sure to tell the difference between yeast and LS I don't thinks the doctors do either 

    • Morrell1951
      Morrell1951 sue19838

      Posted

      Many doctors simply aren't tapped in to the relationship between food, stress and auto immune illness. When I talked to my 70 year-old GP about stress and psoriasis he lectured me on the idea that this was 19th century thinking about women and 'hysterical' illness. The guy has no idea.
    • hanny32508
      hanny32508 sue19838

      Posted

      I'm in Canada too Sue.  My gyno knows all I'm doing and was actually very interested in what I'm doing;  on my last visit about a week ago he told me to keep doing what I'm doing.  I can not really complain about my gyno, though at first I felt very lost.

      It's a new era and a patient will have to learn by investigating individually and via sites like this one.  A doctor has to depend on his training I guess and what the health care system allows him/her to do.  Within that system I don't think there is any training for them regarding food.

      I myself do believe that it does make a difference what you put in your mouth and as soon as I was cutting out most of my sugar intake it started to make a differenc with LS already in the first week.  I share my experiences with my doctors, just so they hear about it.

      When LS acts up, and it keeps doing that so now and then,  I do use Globetasol.  A very small amount already turns the tide. After that I do my other routine again - involving baking soda and coconut oil.  And at present, when it just feels borderline, I add a few drops of tea tree oil in the coconut oil.  Works this far.  

      You also talked about narrowing.  Every other day I still do dilation, using coconut oil as a lubricant.  Somehow that narrowing needs to be kept at bay all the time.  

      And no, you're not asking crazy questions.  It's good to ask questions, I think, so we all will hopefully get a little wiser.  Good for all.         

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