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Just been diagnosed with LS can’t cope

Posted , 9 users are following.

Blueplum
Blueplum

Hi all, I’ve only this week have been diagnosed with LS. 2 white patches appeared and they were freaking me out. Have been researching frantically thought it might be Vitiligo. Nhs appoint was taking weeks to come thou on that choose and book. So went privately, biopsy results clearly shown that a suffer from classic LS. 

I’m only in my 30’s well closer to 40 then anything. 

I can’t bleive they don’t have a cure for this vile disease. 

Basically I don’t know what soaps, shower gels to use, don’t ppl say no sugar sum say it’s ok.

 Any help advice would really help. 

0 likes, 33 replies

33 Replies

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  • jared8423
    jared8423 Blueplum

    Posted

    HI, I had a question for you...Is white spots all you had with no itching or redness? That's what I have and I had a biopsy and i'm seriously questioning what they told me about my biopsy because it just doesn't make sense what they said....What did they say they saw in the biopsy that guaranteed it was LS if you don't mind me asking?

    • Blueplum
      Blueplum jared8423

      Posted

      Hi hun, ive had the odd itch before the last 2 periods I’d say. And once day randomly I thought I’d have a look and noticed a white patch size of a 10 piece and opposite side smaller one appearing. Went gp she said it’s thrush given pesstry and cream - I told her I don’t have an itch it’s just going white I’m freaking out. Said don’t worry. Week after went back the gp given oral antibiotics and that didn’t help 2 weeks later back to gp as white patches had spread now they said we don’t know what it is will have to refer to dermatology. I went private as nhs I haven’t received my appoint as yet. 

      I believe my biopsy to be correct why I say that is after doing research looking at other pics of the same condition mine looks the same etc. 

      Biopsy confirmed upper dermal hyaline thickening and sclerosis classic signs of lichen sclerosis. 

      What did your gp tell you regarding the biopsy??

    • jared8423
      jared8423 Blueplum

      Posted

      mine was done by a dermatologist...I'm a male but I have developed spreading white spots too over the past year...first it was said to be vitiligo but it doesn't look like that so I opted for the biopsy....the doctor said there wasn't inflammation but there was hyperkeratosis...which is thickening of the upper layer I guess...but then he said that was from my pants rubbing or something and that I didn't have to worry about it spreading...That makes no sense to me...It's not from my pants and there are multiple spots and it has spread from the spot he told me not to worry about...It's become an endless stressful ordeal.

    • jayem8
      jayem8 jared8423

      Posted

      Have you looked at images on Google for LS? I'm sure i saw a couple that may be relevant to you. 

      If you think it's LS, go to your family doc & ask him/her to give you ClobaDerm ointment. I'd also stick to using cotton underwear & try not to stress too much as it seems that makes it worse. Good luck!

    • jared8423
      jared8423 jayem8

      Posted

      all the images are way more severe and farther along than what I have and they are mostly of uncircumcised men. I'm the opposite...It is spreading but doesn't look horrendous. I'm just weary of using super strong steroids on a guess. I get stitches out tomorrow by the dermatologist so I guess I'll just ask him a bunch of questions about the biopsy results to clarify what I found illogical about the conclusions.

    • Blueplum
      Blueplum jared8423

      Posted

      Hya hun, I personally was going to go for consultation but opted for a biopsy first as A) was the cost factor B) like in your case they do guess work unless a biopsy has been done in the lab and they have examined properly. These consultants, dermatologists 95% or the time just fob you off ive noticed. Do google the pics & rearch properly, maybe try 100 % cotton underwear that’s what I’ve done got rid of all my lace underwear, and silky ones for boring plain 💯 % cotton pants anything thing to help. Have you gone back to your GP again. Or the gum clinic if your based in the Uk?  

    • jared8423
      jared8423 Blueplum

      Posted

      I'm in the U.S. I gotta get biopsy stitches out tomorrow so i'm gonna explain my confusion to the dermatologist, he's real nice but I still think I'm gonna leave with uncertainty because there was no inflammation but there was hyperkeratosis which confuses me. I'm guessing whatever I have just isn't progressed enough to even know. I'll take the pathology report to my GP but i'm really not sure what he'll do either. It's hard for me to just wait for whatever it is to get worse so they know what it is for sure. I definitely don't believe these are just spots caused by friction though. That makes no sense to me. 

  • jayem8
    jayem8 Blueplum

    Posted

    Hi. I was diagnosed last Friday. I didn't have itching but did have pain on wiping after going to the loo & felt as if something was out of place. After a few weeks, i mentioned it to the doc. She had a look & said i was quite dry & gave me pessaries. Two days later, i realised they were HRT & binned them (already had one stroke & don't want another).

    A couple of days later, I went abroad for a few days & received a call from what i now know was the NHS. On my return, there was an appointment to go to gynaecology dept. The consultant had a look & immediately diagnosed LS.  I've been given steroid ointment to use every night, told to moisturise the area with E45 or Diprobase twice a day, use cotton pants only & not to wear any at all if i'm staying in. No bubble bath & definitely no soap or fragrances in the area..Also told to wash underwear separately so I've just bought Boots sensitive skin laundry liquid. Oh & no talc either. Most of this info is in a leaflet i was given at the hospital.

    Hopefully you get a lot of questions answered at your consultation today & if you're given any other helpful instructions, i'd be interested to hear them. 

     

    • Blueplum
      Blueplum jayem8

      Posted

      HI Hun, thanks for your reply. i as quite disappointed with my appoint today - was a quick 12 min appoint wanted me gone so could’ve move on to Next patient it felt like an expensive nearly £200.  I’m using cotton knickers already  she just given 2 creams to use says come back in 6 months. Diet isn’t a issue so carry on with what your eating an drinking. Said no hair removal cream in the area or outside. 

  • Guppy007
    Guppy007 Blueplum

    Posted

    Hi there, if you can get a bidet they are great for washing after using the toilet.

    It is also worth buying some dilators which you can get online, these are useful in that they help keep things 'open' as LS wants to reduce and shrink your undercarriage and this helps stop that from happening.  For some women that don't use them, they can sometimes have trouble with sex.

    Before bed it's a good idea to use some kind of oil, whether that's coco oil, emu oil, olive oil, as it is thought that stops fusing from occuring.

    • brigitte_27336
      brigitte_27336 Guppy007

      Posted

      Hi  Guppy, I use coconut oil always especially before bed... to hydrate but i didn’t know that it helped to slow the fusing process...? 
    • Blueplum
      Blueplum Guppy007

      Posted

      Hi hun, which dilators would you recommend. I’ve never purchased anything like that. I’m on my own & now that I’ve got this horrible condition I do feel that it would stop me getting into relationship with someone... it’s early days so will see what the future holds. Just coming to terms with the condition. 

      Coconut oil or olive oil will try I use the steroid cream at night. 

    • kathleen65757
      kathleen65757 Guppy007

      Posted

      I have dermeze and I have always used that. It is very good. 

      Four years ago I had shoulder surgery and was worried about wiping as it was my right arm. I bought a good quality bidet and would not be without it.

      However, my specialists told me not to keep wetting the front so I don’t but I love my bidet. It prevents straining and keeps the area clean.

      Now I come to think of it my LS is now in that area but I would not stop using the bidet once or twice a day for cleaning and prevent any straining.

       

    • Guppy007
      Guppy007 brigitte_27336

      Posted

      Hi Brigitte, nobody really knows why or when fusing occurs but its thought likely its when we are sleeping.  I think that if your labia minora is well lubricated then it is impossible for it to 'stick' to other parts of your vagina thus avoiding fusing.

    • brigitte_27336
      brigitte_27336 Guppy007

      Posted

      Makes sense Guppy and like i always say we do all that we can with the info we have... good thinking....🤗

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