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Lichen Sclerosus getting worse, natural remedies?

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SaharaMoonlight
SaharaMoonlight

I'm posting on the off chance that someone has had some success with diet/ natural remedies in reversing their LS. I'm just too scared to visit the GP, I know it sounds ridiculous but I'm petrified of doctors, to make matters worse, I live in small village where everyone knows everyones business, the receptionist at my surgery is a gossip, I don't feel comfortable knowing she will have access to my notes.

My vag looks like that of a 90 year old's, it's just awful. I can't have a proper relationship or be intimate with anyone, I didn't lose my virginity until I was 32 (with the lights off because I was too embarrassed for my partner at the time to see me) and that was a nightmare, the tares and cuts didn't settle for nearly 3 weeks, I had to slather myself with vaseline each time I needed to pee.

I can only wash with Sanex Zero, all other products dry and irritate my skin.

I have wasted nearly £120 on two little pots of Emu Aid ointments in mild and max strength, and I'm annoyed for all that money they haven't done anything to improve my LS.

I have recently spent £200 on a AHCC vitamin/fermented product from Japan that claims to heal Cervical cancer by increasing natural killer cells and boosting immunity, so I am keeping my fingers crossed that this may improve some of my symptoms.

Looking back, I first noticed I had LS when I was about 13 years old, at that time I didn't think anything of the small white patches, they looked little friction blisters you get on the side of your toes which I assumed it was just there due to it being a damp environment down there. It wasn't til I was 15 that I took a closer look and realized that the white patches weren't raised or bubbled like a blister,they were more sunk into the skin and had a shimmery white colour.

Through my 20's-30's I've noticed the LS spreading from only small white patches on the top of the inner labia all the way to the perineum, and on my buttocks. I took a photo with flash, there appears to be a white line that resembles LS going inside passed my uretha inwards and I'm freaking out thinking its cancer, I have never been for a pap smear, I'm terrified as I know for a fact if I go to my GP, they will send me instantly for biopsies and invasive investigations, I can't deal with being prodded and poked about like a Guinea Pig. I feel physically sick with nerves and worry, and I know doing nothing it's getting worse:( I wished I had gone for my first pap when I was in my early 20's, I stupidly thought I could have cured this disease before I went but it has only just gotten worse.

Other things I have tried were cutting out gluten, dairy and sugars. I did do the keto diet for a few months and that helped with the itching and flare ups but it didn't reverse the white patches.

If anyone has other remedies that have helped them I would be really greatful x

0 likes, 2 replies

2 Replies

  • do21103
    do21103 SaharaMoonlight

    Posted

    Hey! I'm so sorry to hear about all this 😕

    But really there's nothing to be afraid about! It's better to do preventative steps rather than dealing with actual cancer in the future...

    Pap test is nothing! They put that uncomfortable thingy in your V and then just take some of your inner fluids with a long Q tip. Is there anyone that you trust? Someone that can support you? I brought my best friend to hold my hand during biopsy and we both cried after and hugged lol.

    Read my post from a few years ago:

    https://patient.info/forums/discuss/i-stopped-using-steroids-read-this--718394

    I think the first and easiest step is to get a good quality organic coconut oil (something that is good for cooking as well) and just rub it on the affected areas morning and evening plus every time after you use the bathroom. Keep doing it forever. Really. Eventually you'll be able to reduce to twice a day, but obviously accompanied with the right treatment.

  • eggbiscuit
    eggbiscuit SaharaMoonlight

    Posted

    Dear Sahara,

    I understand your wish not to have to go to the doctor. From your description, it does sound like you have either LS (the symptoms), or vulvodynia, or perhaps another skin disorder. If you waited to have sex until 32, there may be a lack o f hormone that is affecting your whole genital area. Pap smears should be done by 20 years of age just to establish a baseline of what your chemistry is like. Sometimes they do hurt but you can ask the doctor to use a small speculum. They have those for children. If you have tried reducing or elimination wheat gluten, sugar, etc... without remission, then that's likely not the problem. What is the "AHCC" product you've ordered? Not familiar. EmuAid also did not work for me and neither did a 3 week course of Perrin's natural cream. Organic extra virgin coconut or olive oil are good emollients. It sounds like you've had LS, untreated for over 20 years and simply put: You must see about it before more damage occurs. You need a yeast culture, a herpes test, and a biopsy. Yes, mine hurt some but not for long and it is one more piece of evidence necessary to get on with the correct diagnosis. I know you can worry yourself sick over this but again, I urge you to to some doctor. Out of town if necessary. I know the NHS may not let you as we have more freedom of choice over here in the US. You need to take the next step. Biscuit

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