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Daily discomfort relief - my story

Posted , 15 users are following.

norah89
norah89

First I wanted to thank everyone on here for the tips and advice. I have learned more about LS here than at the countless doctor appointments I have had!

I noticed a few ladies with clitoris irritation or excessive sensitivity there sometimes. I had this too, but also had daily nonstop irritation in the labia minora area (or where the labia minora should be). The whole area for me down there was either red or white, no nice pale pink supple flexible tissue. I'd been doing the baking soda baths and the spritz after urination followed by coconut oil and using the club after the bath, taking care to rub it in. I also cut all sugar, gluten, dairy, and alcohol from my diet. I was initially quite strict with no sugar at all for a month, then had one serving of berries only daily for two months, and now have either some fruit or a very small amount of raw organic honey daily.

When I got my period, the irritation ramped up. I have since learned that is because of the pH of blood, even one drop of blood on that skin can send it into a frenzy because it was so irritated and raw.

I saw my GP a half-dozen times at least while waiting to get into a gyne. I have to say I am not impressed with my gyne, who I have seen for 2 visits (all of 5 minutes each visit) and all she had to say was that it wasn't a big deal and just use the clobetasol, and lots of it, and come back in a year. By this point the LS had spread to the anal area and I was having tearing, pain, and fresh blood with every elimination. In short, I was not well. I tried acupuncture and a Traditional Chinese Medicine doctor. He was very well recommended and actually is an MD as well, but he never examined the area and we couldn't really communicate fluently.

I continue to see my GP and gyne (when she'll see me), and I continue to use clobetasol daily (since June 2015). I am in no way suggesting that anyone abandon the clobetasol or steroid ointment. But I have to say, what has made a huge difference in my health is going to a naturopath.

She has recommended dietary restrictions and some vitamin supplements, but also introduced me to a product I haven't seen discussed here: ozonated olive oil. Of course, there are different brands and whatnot, and as with anything it seems there are some better than others (something to do with how the ozone is put into the oil and then how the product is stored). It should be refrigerated. It melts on your fingers like coconut oil.

It is apparently a powerful epithelial skin healer. I say apparently because I am no scientist. I read that on the Internet and heard it from my naturopath. It is a strong anti fungal, and I actually thought of using it on the vulva when I was getting the excessive clitoris sensitivity because of something I had read on this site about how fungal infections can live in the clitoral hood skin. Anyways, I gave it a try and I must say, it BURNED. I won't lie. Like when you are holding your hands too close to the flame and want to back up. But it dulls after ten minutes, and I put it on then went to bed, and I was able to sleep, it didn't wake me up in the night. No pain by the morning. It burned the next night too, but every day less and after four days it didn't burn at all.

I keep at it once daily and I have zero daily irritation now. It doesn't even feel like anything is wrong down there. I still have fusing of the labia minora, but I can start to see the outline of a raised edge underneath the skin. The white is more off white than stark white and the red is now pale pink. The skin is stretchable without pain. No bleeding on elimination. Of course, the diet and supplements and clob must all play a part. It's just a suggestion if anyone is interested - just look up ozonated Olive oil and make your own decision. I think it made a big impact on my sanity and emotional capability to handle LS, by relieving some pain.

Sorry for the long post!

0 likes, 38 replies

38 Replies

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  • lee12629
    lee12629 norah89

    Posted

    Wow Norah so happy you found somthing that helped you.I still dont know if i have lichens,dermatologist said no,one obgyn said maybe mild,third obgyn never uttered the word..one said the only way to be 100 percent sure its lichens is to do a bopsy to confirm as other things can mimic it.I still have not had a biopsy but am thinking of requesting one.I have irritation since april.I also have vaginal atrophy.Was it confirmed by biopsy??Thanks.
  • Morrell1951
    Morrell1951 norah89

    Posted

    That sounds good. I've been taking olive leaf extract capsules for a couple of months.

    Also, stopping acupuncture may have helped. I had acupuncture for a whole year while my psoriasis flared. I hadn't heard of the Koebner effect and neither had my (also, not very communicative) TCM doctor. I cycled through flares weekly all that year. Any skin trauma triggers a flare. Needle pricks = skin trauma.

  • norah89
    norah89

    Posted

    I didn't have a biopsy. My gyne took one look at me and said "definitely LS. Classic white figure eight. Labia minora gone and buried clitoris. I won't put you through a biopsy unless you don't respond to clobetasol." I took pictures to monitor the changes over time and I am glad I have the proof of how it did look, should I have to change docs. Since it sounds like yours (Lee) is not as obvious, you might need the biopsy.

    I never thought of acupuncture triggering a flare, but I suppose that could very well be. Interesting that it would trigger LS in the vulva area with needles nowhere near it, but skin is skin, one organ, so why not. Good grief! I thought it would help since my hocus pocus doctor (my TCM doctor - and I mean hocus pocus in a very fond way, he is very well respected and talented) said I needed to fix the flow of chi in my body. I think it did help me relax and de stress - but it could very well provoke LS based on what you say, Morrell.

    • lynne1945
      lynne1945 norah89

      Posted

      Looks like you have done some good work Norah and gone a long way towards getting some sort of control. Well done, you. 

      My LS turned out to be LP when I saw the vulval health dermo early this week, but that's another horror story that I want to move on from.

      Same treatment for LP, the Clobetasol, but impossible to apply on open lesions without pure agony. I did persist but after six weeks knew I needed more help than my GP and gyn who said EXACTLY the same as yours! 

      I had a gut feeling I didn't have LS .... Didn't look a thing like the piccies on line....   The pictures of LP the specialist showed me, which I had never ever looked at because I had MY diagnosis of LS, looked just like my mirror! 

      The derm vulval health dr took one minute to diagnose me (5 hour round trip)  and did tell me this about my two 'wrong' biopsies .....

      The sample of skin is actually sent to eliminate pre cancer or cancer, the concern is not to diagnose the Lichen. If it's clear of cancer the lab report will just report that the sample shows nothing ominous so it is reported back that yes, the sample the doctor sent labelled 'query LS'  must be just that! 

      Which makes me have all the feelings of anger and frustration possible that I struggled on with a false diagnosis for many months.

      My treatment now is three long months of high dosages of Prednisone while I slowly and carefully reintroduce the Clob until I can tolerate it enough to let it take over for the oral drug.

      I am in NZ and am taking a holistic approach to my health like you. Naturopath who gives me supplements which haven't helped my LP much but given huge relief to gastric probs and IBS. They can't prescribe here, they can give many herbal remedies and use massage and reiki and other treatments.  She calms me down, such a sensible lady. Empathy but no sympathy. Perfect.

      I have gone gluten dairy coffee alcohol chocolate and almost, almost sugar free!

      I have changed every aspect of my personal cleaning and household cleaning and clothing I can think of too. 

      In a lot of ways I feel healthier and along the way I have shed every excess 28 lb worth of weight I was carrying in just four months with the extreme regime. 

      Have tried every conceivable cream and lotion from here, USA and Australia, cost me a small fortune. You name it, I've tried it probably. In the end I found my saviour in  my local chemist, it's just called Fatty Cream and is used for smothering over psoriasis. It cost $10 and comes in a huge half a kilo pot. It's just soothing, greasy and almost as thick as Vaseline but Vaseline burned me badly. 

      The ozenated olive oil sounds amazing, I will do some research here!

      Sorry, long post, it's because you guys are the only people I ever talk to about it lol.   Only hubby knows and he's so over it! surprised

      good luck Norah and Lee and all 

       

    • lee12629
      lee12629 lynne1945

      Posted

      Aww so sorry you have ben through so much..we are here for you,please keep us posted how you are doing.
  • sandra01720
    sandra01720 norah89

    Posted

    I'm fascinated by the ozanated olive oil. Never heard of it and unfortunately I am one of the ladies that has problems with irritated clitoris. Where can I find that product?
    • sandra01720
      sandra01720

      Posted

      Researched and I see you can buy online. Apparently here are different ways of producing it and the cold plasma is a superior process. What brand name do you have?
  • norah89
    norah89

    Posted

    Wow Lynne, I can't believe you had to go through all that! I have wondered if ozonated olive could be used for LP, to heal a skin lesion. I know my naturopath told me she has had clients with gangrene use it on open wounds, and I read online that it is common to use on pets since it is not harmful if they lick it and ingest a bit. I don't recommend ingesting it without someone's approval though - just in case! Good on you for sticking with the strict diet, I find it difficult sometimes but I stick with it too.

    Sandra, I got mine from my naturopath. It's quite expensive, but you don't need to use a lot. Mine is extra virgin cold pressed Olive oil with activated oxygen (ozone), about $50 Canadian for 50 mL. You can probably buy online or call around your local health stores - I haven't seen it in a store but I haven't really looked since the office that my naturopath works out of sells it. It's in a blue glass jar and refrigerated.

    • sandra01720
      sandra01720 norah89

      Posted

      I'm Canadian also. Where is your naturopath from? Maybe I could buy it from there if it's near me?
  • gill77081
    gill77081 norah89

    Posted

    Great to hear your story and suggestions.  I am new to the site and was told I had lichen planus in the vulval area (red sore lesion) and was prescribed Dermovate but was given no other help or advice and no follow up either.  I did not have a biopsy, the gynae and dermatologist just took one look.  I have patches of lichen planus on my legs and use Calendula cream which is a homeopathic cream which calms down itching and soreness.  I got it from Holland & Barrett.  Don't know if you can use it on delicate areas.  I once went to a homeopath and she recommended it.  I did not get much benefit from the homeopath - she said skin problems are a sign that at least you have nothing wrong internally - your skin is taking the strain (???). 
  • Guppy007
    Guppy007 norah89

    Posted

    Thank you for sharing your story, it is always heartening to hear that someone has discovered what works for them, good for you!
  • norah89
    norah89

    Posted

    Sandra, I am in Vancouver BC. Where are you in Canada?

    Regarding what your homeopath said Gill, I think my naturopath feels differently. I remember her saying something along the lines of "if you have toxins in your body that the liver, kidneys, and digestive system can't get rid of through their own malfunctioning or being overburdened, your body will try to push them out wherever it can - through the skin." So by her thinking, if you are having these painful skin issues that you weren't born with, something is going wrong in your body.

  • gill77081
    gill77081 norah89

    Posted

    Yes, I was not very impressed with the homeopath apart from the suggestion to use Calendula cream which works for me.  I get patches of psoriasis and kept on and on picking at a patch on my elbow.  I could not leave it alone, but as soon as I picked off the scales, they reformed.  Then one day I told myself to stop and began putting Vaseline on instead, and it cleared up.  I am trying to cut down on sugar and a lot of it is stress (my son died last year).  Trying to live a calm life!  I am putting together a list of all the suggestions on this site.
    • lee12629
      lee12629 gill77081

      Posted

      So sorry to hear about your son. please do put a list together,i am stressed to the max and never relax.
    • Guppy007
      Guppy007 gill77081

      Posted

      That is terrible, sorry to hear that!    

      What I have found is good for lesions and sores, is Desitin, which you can buy over the counter, it is used for nappy rash, and really works for me, and, of course, is better to use than Clob if you can get away with it.

    • gill77081
      gill77081 Guppy007

      Posted

      I've never heard of Desitin but I look after my 18 month old grandson and use Sudocreme if he has a red botty, and looking at the ingredients the main one is also zinc oxide so it looks like a similar product.  Another suggestion for my list!
    • Guppy007
      Guppy007 gill77081

      Posted

      Here is what I have discovered....sores and lesions around my undercarriage I treat with Desitin or vaseline, (Using Clob made it worse in that particular area) but I only use this cream for the first two or three  days, while it is very sore and painful,  then,  what I have found is that you have to keep the area dry!  For this, I use fine unbleached Yucca flour, as talc contains toxins, and shouldn't be used around your Vjay.  So, the top half of your Vijay  has to be lightly lubricated, always, (clitoral area and between labia minora and labia minora) to stop fusion,  and the rest nice and clean and dry especially if you have lesions or sores, hope that makes some sense, but it does work for me, and has got to be better than using the Clob.  The Clob is great for when I have problems with my clitoris.
    • lynne1945
      lynne1945 Guppy007

      Posted

      Ohhh Guppy, that is interesting! I am going to have a go if I can find that flour! I have read here that somebody does use talc and I am afraid too that it wouldn't be sterile enough. But the lesions, it seems wrong for them to be always pressed against labia. I have just had a four hour car ride and when I got home honestly felt as though the lesion was ripping away any surface healing it could have achieved after all the pressure.

      Have been having mad ideas of designing something to keep my labia from touching together while in bed! Crazy plans of finding a private corner and exposing myself to the sun for half an hour a day .... Anything! lol 

      Am just finished my first week on Prednisone 40 mg and the burning and pain is easing somewhat. A few more days and I go back to the Clob while reducing the Prednisone very very slowly.  Dreading it .. .. (not sure when I would use the flour as well as the Clob, it's all a great puzzle at times but my determination is outweighing my pessimism at this time, which is a good thing I feel!)

      On the plus side the prednisone has made me so manic every afternoon, I have springcleaned the house and organised all my cupboards lol

      hoping I can find this Yucca flour here! It's hard to access some stuff here in NZ at times. I spent all day today trying to find Ozonated Olive oil recommended for healing lesions, but had no luck, sadly. 

      Dealing with several health professionals with differing ideas is also a bit difficult as well. 

      Cheers X 

    • Guppy007
      Guppy007 lynne1945

      Posted

      Lynne, the flour I found in my local Organic health food store,  I chose it because it is mainly fine, soft, and sulfite free, and of course, is washed off every morning in the shower..It does not have to be this particular flour, I have a problem with sulfites, so maybe you could experiment with something else, maybe unbleached flour would work for you, as I often say, you have to experiment a bit to discover what works for you.

       If I get a lesion, it is usually near my perineum, near my anus, and a light dusting with said flour works well but remember the first two or three days it needs to be treated with cream as I mentioned in my original post, because then it is usually very sore.  If you are getting lesions inside your Vjay, between your labia minora and labia majora, I think if it were me I would be "dusting" that area before getting into bed, I happen to think bedtime is the dangerous time for fusion, and it is why I always make sure I lubricate, but in cases of lesions, I would consider trying the "dusting" It all depends on what your symptoms are, and where they are placed. Hey, this is me just giving you ideas, but that's how people discover what works, is it not?

       I would imagine your house looks immaculate, I have never taken prednisone, but I know enough about it to know it can make people manic.  Let us know how you get on. x

    • lynne1945
      lynne1945 Guppy007

      Posted

      Thanks Guppy, you're the best! I value all the ideas I gather, we can try some and leave some behind, but it's the many choices that makes the difference. 

      I went to the LP forum but it is mostly concerning OLP and body lesions and I found it hard to find much vulvar info easily. It's rather all over the place. Unless they have a section for lady parts and I missed it?

      I like this forum. The people are kind and patient and ever so willing to share. 

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      This is a very smart discovery, Guppy. I seem to remember a scene in a movie where someone threw a bunch of flour on a wound. Tapioca flour might be easier to find. Or potato.
    • Guppy007
      Guppy007 Morrell1951

      Posted

      Thanks!  Everything is worth trying, at least once.  I think Tapioca would work well, if you can get it organic, even better, even rice flour would work, and it  lasts a long time...remember you need a powder puff too.
    • Guppy007
      Guppy007 lynne1945

      Posted

      Maybe drop a line to Emis the moderator, he might be able to suggest some threads.  I sometimes pop over there, and I must say that you are right it is usually OLP.  
    • lynne1945
      lynne1945 Guppy007

      Posted

      I did send a message to Emis, thanks for the tip!

      tomorrow I will go find some flour at local health food shop. I only use gluten free and not sure what's in that flour so better not risk it.

      What exactly is yukka flour anyway?

      Lee thanks for your suggestion, I have looked at that forum and it's true I do have atrophy, but it isn't my biggest bugbear, I just want to get this burning and pain sorted out first. Four months is long enough darn it.

       I hope you are getting some relief too, stress is such a bad thing isn't it. Impossible really not to feel it almost constantly when we are suffering X

    • Guppy007
      Guppy007 lynne1945

      Posted

      Yucca is a vegetable very popular in Central America; I love it!! it tastes like mashed potatoes, only better in my view.  Look at  rice flour, Tapioca, and Arrowroot all could possibly work, I have all these in my kitchen, and they are all gluten and bleach free, it is a case of trying and seeing if it works for you or not.  
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