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White patches Increasing

Posted , 14 users are following.

suzie37971
suzie37971

Now been diagnosed 3mnths but suffering for a year now .

I have changed my diet gluten free.

Sugar free, no alcohol, zinc,vit D,B.

I use Derma 500 lotion to wash ( been my saviour)

Spray with bicarb and once per week at the most twice bicarb baths. As i found bathing everyday was too much.

I use Betnovate ointment still twice per day and yes i use petroleum jelly as everything else I have tried makes me sore.

As i am now living in Spain finding it hard to find alternatives although looking online for beeswax.

But itch and white patches initial diagnosis only on clitorus ,I find to my horror after lots of redness and blistering now along inner labia. Does this ever get better if you go into remission ? As I am reading a flare up lasts three to six months and i feel mine has gone on longer 😥

0 likes, 30 replies

30 Replies

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  • karen23320
    karen23320 suzie37971

    Posted

    Susan- I had a white bump next yo my clitoris and ignored it. I had pain in my clit and ignored it, i had a “ raw feeling” and teied to ignore it. By the time I got to Dr two months later my inner labia were covered in ulcerated sores, my outer laboa itched like crazy and I cried whenever I peed. I hv been un homeopathic Eumaid Maxx for 12 days and no itching, no burning, no pain and I haven’t looked yet, but my finger doesn’t feel the ulcers anymore. It is made up of several different  oils and herbs. I ordered more, plus a regular  Eumaid and their cleansing bar- on Amazon or Eumaid. Com. Good luck! 
    • jayceevee40
      jayceevee40 karen23320

      Posted

      I also used the Eumaid MAXX for a couple years but still had flares.  Now with the switch to Synalar and no more Clob plus using only my DIY LS Spray I haven’t had a flare in well over a year.  I’ve had LS for close to 15 years (since 2004) so have fought this stuff that long.  My protocol now keeps me flare free.  

      My LS spray:

      Witch hazel 8 oz.

      3 drops of tea tree oil

      5 drops of Vitamin E oil

      5 drops of lavender essential oil

      Capful of castor oil (I use at least 1.5 capfuls)

      Optional:  After spraying after toilet use and shower, apply 1/8 tsp of 100% aloe vera gel

      Blot with white flannel only, not towel.  I purchased a yard or so of white flannel, laundered and cut up in small washcloth size pieces.

      This spray has been a blessing for me.  I keep one spray bottle near the toilet, the other in the shower, I never ever use anything else in my vulva area period.

       

    • karen23320
      karen23320 jayceevee40

      Posted

      Thanks for all the great info. I am a little leery of the lavendar oil because it is part of the ragweed family and I am allergic to ragweed. Can I ask if you work? I am reading all these protocols and people with spray bottles and wonder how they can do all these and still maintain normal life? I work 4 jobs, drive 600-800 miles a week,  constantly in client’s homes ( some bathrooms I WOULD NOT use! ), conducting group therapy ( can’t just leave abruptly) or teaching in HS ( can’t just walk out during a lesson), or performing on stage.... does it all get  easier when you are not in a flare- up? 
    • suzie37971
      suzie37971 karen23320

      Posted

      Hi karen, yes i do I am aBeauty Therapist and when i worked in the Spa in the Uk my uniform was nylon 🤦🏻???

      Also i have not had the luxury yet of being in remission.

      Re Lavender i am allergic to most things but thankfully not Lavender .

      I am also always looking for alternatives to help .

      I have a little mini bottle spray and seem to have got it off to a fine art whilst stooping 😝

      The things us woman have to do 🤦🏻???

    • karen23320
      karen23320 suzie37971

      Posted

      I pray we all hv remission soon! I’m 14 days in and going crazy ( luckily am on vacation and can focus on ME for a few weeks!) People hv been writing in who hv had it for decades! 😬😬

    • suzie37971
      suzie37971 karen23320

      Posted

      Thank you Karen , i have just tried lavender with castor oil and it has caused burning and swelling 😥

      I really want to get away from petroleum jelly and the betnovate but nothing else works just agivates and i am back to square one again 😬

      Is emuid easily available and is it exspensive ? Only price is not an issue if it works it is if it does not 🤦🏻???

    • karen23320
      karen23320 suzie37971

      Posted

      I found Eumaid on Amazon. It is $48 regular and $58 Maxx, but it has healed all my lesions, and gotten rid of  itching and pain, so it’s worth it. Now I hv to wait and see the Specialist and discuss if I need the steroids to combat the T- cells at the root of the disease and not just treating the symptoms.  15 days Ago I had no hope, now I do! 😁😁

      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.

    • suzie37971
      suzie37971 karen23320

      Posted

      Hi Karen , thank you for your reply .

      The moderator has removed your link can you private message me please ?

      My list of things that i have tried and that has not been a success is getting longer 😬

      Great to hear you are feeling better , LS is not an easy thing to manage and being in an area that we have it makes it worse for us all 😘

  • jayceevee40
    jayceevee40 suzie37971

    Posted

    Sorry you have so many issues.  I am so thankful after almost 15 years with LS that I haven’t had a flare in over a year.  I use only Estrace cream and gyn oncology doctor changed me to fluocinolone (Synalar) so NO MORE CLOBETASOL.  I also have a solution that I spray in the shower and after toilet use, no soap or other solutions worked for me, then I blot only with white flannel (cut up from a yeard of flannel).  The LS spray has been a lifesaver as has no longer using Clob which I’m convinced gave me flare ups.  Jan Vaughn, 78 years young and thankful.
    • suzie37971
      suzie37971 jayceevee40

      Posted

      Hi Jan thank you what is your solution spray please and Estrace cream ? Can i ask what country you are in please ? 
    • jen4377
      jen4377 jayceevee40

      Posted

      I've never used the clobetasol... I'm in the USA and the clob is extremely expensive. I am blessed to have a wonderful lady doctor who really tries to work with me since I am uninsured. I use Triamcinolone from time to time during flare ups. I also have the Estrace cream which I use topically. I have to be careful with the hormone cream because I have had to have breast surgery in the past. I certainly will talk with her on my next visit about Synalar! I love reading everyone's stories and seeing what has helped and worked. I've got some great information on this forum and I know I'm not alone! Thanks to each of you brave hearts... Never give up, never surrender!!! confused

    • jen4377
      jen4377 suzie37971

      Posted

      Susan, I am not sure if you are asking me or jayceevee...

      The spray I mix and use is a saturated solution of borax with 7 drops of lavender oil. I also do borax bath soaks. You can also do the same with baking soda. (borax works better for me) There is a whole thread on here titled 'an experiment with borax.' If you haven't already read it you might want to check it out. There's a load of testimonials and information on it. Of course the Estrace cream is a hormone which I use occasionally and then only topically. I am post menopause and have had breast surgery so I can't insert it vaginally. I have to be very careful with it due to the risk of breast cancer. It should be very helpful to those of you who are not at risk! I'm in the USA...  

    • suzie37971
      suzie37971 jen4377

      Posted

      Hi Jen yes it was for you re solution.

      I have been using bicarb with no issues, but i am going to see if I can get borax the only thing is what I am reading tells me it that it is a washing powder solution ? I am British but now living in Spain.

    • jen4377
      jen4377 suzie37971

      Posted

      Yes if you were here in the USA you would find the borax over on the aisle with laundry soap. Borax is used as an additive in laundry to soften the water much the same as baking soda would. Our water here has lots of chlorine added for purification purposes which in turn jumps the PH level way up. A lower PH is much healthier for our skin and body. Borax is an all natural occurring mineral mined from the ground. I realize it is difficult to get over in some of the European countries. The ladies over on the LS forums from other countries order it on line. If you take a good vitamin/mineral supplement it will be included with the trace minerals in the form of boron. Borax is one of the purest forms of boron... Like any other mineral too much of it would certainly not be good for you. My spray bottle holds about 8 ounces or maybe a little more - about a cup of water so I add a good pinch of borax and 7 drops of lavender. It works great!

    • suzie37971
      suzie37971 jen4377

      Posted

      Thank you so much Jen for your very imformative reply.

      I will let you know how i get on as here in Spain at a Chemist you can but most things directly over the counter .

      The Chemist also have lots of things that we no longer can get easily in the UK .

      I am going to try to also purchase Emuid cream but  I have found a website ( Spainish that supplies it ) 

      Thank you for your help and advice 😘

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