Daily discomfort relief - my story

Posted , 15 users are following.

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!

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  • Posted

    Sorry to hear about your son Gill. I can't even begin to imagine what you've been through with all that. Glad that you've found some relief - I like Vaseline too, I use it all over the vulva area before a workout to keep sweat off the skin there.
  • Posted

    Norah

    I wonder how you are doing. Still using your regime and continuing to get relief I hope!

    I tried to get the Ozonated olive oil from loads of health shops in two cities here but so far nobody has even heard of it. I saw it on line, Fishpond carries one, I would get it but am only concerned that it may spoil while in postage. It says keep refrigerated and it's summer here, if it softens/melts .... so it's a bit of a dilemma as its expensive. I'll keep trying because it sounds like a really worthwhile thing to try. 

    Kind regards and continuing success!

    • Posted

      Thanks Lynne, I am sticking with it and have continued to have zero irritation. I'm sorry you're having trouble finding the ozonated Olive oil. I know you can buy it online but I'm not sure how they package it. When I got it the first time I could tell it had come out of the fridge but they said it was ok to leave out until I got home (I was going back to work). I think the fridge just helps it last longer, so maybe it would be fine shipping and then put it in the fridge when you get it. I will ask my naturopath where else to get it and if it's ok to get shipped out of the fridge and let you know. I'm seeing her on the 27th.

      I have started tapering the clobetasol and replacing it with the OOO, and things are still going well. I do not plan to completely discontinue the clob though.

  • Posted

    The ozonated olive oil sounds good, I'm intrigued to try. I was told by my derm to start using protopic instead of clob but I've been to scared to use the protopic so have been trying to cut down the steroid use to every other day, but I'm struggling as anything seems to set the itching and discomfort off, so I may give the oil a try, to see if I can help the discomfort abit 
    • Posted

      Jessicat -- what is the difference between Clob (steroid) and Protopic (immunosuppresant) as far as long term risks?
    • Posted

      Well I read on the leaflet that comes with protopic that it can cause or make skin infections more common e.g. Folliculitis and herpes simplex. So I've been reluctant to try it as I don't want any thing else wrong with  my skin. I also went to my doctor to ask about this and he confirmed that it can increase the occurrences of them. Where as the main risk of a steroid is the thinning of the skin I think 
  • Posted

    Hi Nora, I have LS and seem to be getting the same response as yourself from my gyne and various GPs i have seen can't give me any advice as they simply don't understand this condition. I have tried many creams and ointments and keep on with the dermavate prescribed to me but don't give me much relief and can't seem to get this condition into remission although the gyne says it's not bad.. Typical eh but doesn't help me at all. I worry that it will spread as yours did so am eager to try the ozonated olive oil but unsure on which one to try. Can you tell me which one you tried and where to get it from.. For example is it only available on line?

    Many thanks

    Jo

    • Posted

      Hi Jo,

      The brand I use is HyperOxy. Not sure if I am supposd to say brand names, but I guess I'll find out! I want to be really clear, I still use clobetasol and when i taper the clob, my skin thickens and I have pain around back with elimination. What the OOO does for me is completely get rid of irritation/itch/raw skin and the pain with that raw skin rubbing against each other. I used to put Vaseline and it helped that irritation, but didn't heal the skin. I think it gets rid of yeast in the skin and helps skin heal. I have used it on a painful rash on my inner thighs and it got rid of that too. It doesn't even feel like I have LS, unless I try and taper the clob around back. It still looks like LS, because I still have labia minora fusing.

      I think you can buy it online. I get mine from the office where I see my naturopath in Vancouver BC.

  • Posted

    Wow--I'd like to try that! When I get irritated, I usually use the Clobetasol ointment on my vulva--my doctor told me it was safe to do that. But I'd much sooner go for a natural remedy. I do see that they sell ozonated olive oil online, so I'll probably buy it on Amazon, as I'm not sure which types of stores even carry it. 
    • Posted

      Hi:  I must have followed you over here from the other forum.  I am going to look at Sprouts for some of these products (ozonated olive oil).   I go there once in awhile to pick up natural products.  I will see if they have natural pantie liners.

      Kathy

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