1. Community
  2. Women's health
  3. Lichen Sclerosus

Labia Minora Shrinking!!

Posted , 26 users are following.

Nettie62
Nettie62

Hi Ladies

I have never used clob and have managed my itching, soreness and lesions with natural things. Olive oil or coconut oil to keep things moist and a little dab of tea tree directly onto the itch which for me is at the top of my left labia majora just on the inside edge. This is where my white patches are plus a few slightly raised what I think must be hair follicle spots. ( waiting for a dermatologist ref to come through re this). What is concerning me is that in the last couple of months my labia Minora has noticeably shrunk and my clit has also shrunk! I have no fusing and can still have sex with no pain. ( long may this continue). Does clob prevent shrinkage or will it happen regardless. I was diagnosed 2 years ago. Maybe I've been lucky up to now and LS is starting to enforce her true colours on me now. I don't want to use clob but if this is a preventative measure then perhaps I should. I don't have any LS symptoms other than shrinkage at present other than on my labia majora. I am 55yrs so maybe this could also be atrophy from menopause? Any feedback would be appreciated. Thank ladies.

1 like, 134 replies

134 Replies

Prev Next
  • dd99681
    dd99681 Nettie62

    Posted

    LS can cause atrophy, but a potent steroid can cause shrinkage too.  The steroid is to control inflammation and hopefully stop progression of LS but there are side effects, including shrinkage.
  • gae042846
    gae042846 Nettie62

    Posted

    Hi Nettie,

    I know I'm in a different age group and was diagnosed 20 years later but this is what has happened to me.

    I've had LS since 1989.  It wasn't diagnosed until 2009.  Not one doctor knew what it was.  My gyn even sent to the Center for Infectious Diseases in Denver in 1990 and they didn't know what it was.  No one took a biopsy.

    I'm 72 and only last year have the fissures stopped.  All of my inner and outer labia have been completed eroded.  Had I been able to use the Clobetasol Ointment in the early stages I might not have lost so much. I had to have my urethra dilated a dozen times since scar tissue kept forming over the opening and it was hard to urinate. Thinking what more could LS do to me? I thought it had run it's course.

    Then this year I was diagnosed with an ovarian cyst and needed to have my ovaries, fallopian tubes and cyst removed by an gyn oncologist.  I informed him that I had Lichen Sclerosus  and he said that my vagina looked healthy.  I said it may but I still have LS even though I am not showing any symptoms.  I had my surgery on Aug 1, 2018. They had used a preparation called Chlorhexidine on my vagina and anus during my preparation for surgery.  When I woke up my vagina and anus was on fire and throbbing. I screamed when I had to urinate. And I had urinary incontinence.  I asked for a dermatology consult. The hospital did not have a dermatologist on call.  They sent a gyn to see me.  He said to use ice bags and use Aquaphor as a barrier so the urine would not burn my vagina. 

    From the hospital I went directly to my dermatologist who said I had lesions on my vagina and anus and to start using Clobetasol Ointment again. Also, I had Aquaphilic at home and that really helped so my urine didn't burn. During this past 30 years, I had developed lesions on large areas of both of my thighs, on my chest, under my breast and on my back.  All those areas are now clear.  As an advisement, Clobetasol cream is not effective,  only the ointment. 

     

    Also, if you ever need surgery, I highly suggest that the surgeon do a sample of what they are using for skin disinfection before the surgery to see if you have a reaction to it.

    I wish you the best, get the best most informative dermatologist who sees a lot of LS patients and is up to date on the latest information.  Stay on the website as we all can learn from each other.  

     

    • Guppy007
      Guppy007 gae042846

      Posted

      Hi gae, you poor thing, it sounds like you have had a terrible time with Lichen Sclerosus. 

      What I took from your story is that even when you told the doctors you had LS, they didn't listen, they thought they knew better and ended up causing you extreme stress.

      Glad that you are doing better now.

    • gae042846
      gae042846 Guppy007

      Posted

      You're right Guppy.  I'm thinking of seeing a lawyer after reading about the prep they used.  There are warning labels not to use in the genital area.  He was only the make 3 incisions, one at my belly button and 1 to the right and 1 to the left.  He never said anything about doing anything to my vagina at all.  From now on, I'll be asking a lot of questions if I ever need surgery again.  

      I just wanted to share with everyone...never stop asking questions of what a doctor is going to do. And get in details not generalities.  Good luck to you.

    • sue162
      sue162 gae042846

      Posted

      What I also noticed was that no matter how many times at investigation I said I was very sore and be gentle no one did as I said.  No bedside manner at all x 
  • janie27576
    janie27576 Nettie62

    Posted

    ladies , do i buy the borax that says sodium tetraborate a natural mineral? wanted to try it, i am a little irritated and wanted to give that a try.... i guess i have to stop drinking coffee and maybe the irritation will stop. i am watchin what i eat but i am so confuse sometimes and i just eat...still afraid to have sex, havent gone there yet. i have an appt with a throid Dr. and i want to run tests and see what can i take to get my libido back.  maybe its too late cause i  am 66 yrs old ..lost my interested in sex but i want to make my hubby happy..any sugguestions on what to eat or take.. help on this janie
    • Nancy_K_B
      Nancy_K_B janie27576

      Posted

      HI Janie, 

      when I was building hte autoimmune nutritional protocol I found that Omega-3's, one of the cofactors for Vitamin D is also a libido builder. Zinc is another cofactor also builds libido.  I also jut looked up for you and see that the prolific medical writer DrAxe dot com has a quite a well written page lifestyle and food that helps build libido. 

      here is my article that shows many interactie elements to autoimmunity: 

      https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

      22.  OMEGA-3 ESSENTIAL FATTY ACID is another Co-factor for Vitamin D.  EPA and DHA Omega 3's - Cofactor for Vitamin D; also supports libido.   Studies have shown that omega-3 oils enhance B cell activation and select antibody production, which can lower the inflammatory response and help your immune system fight off pathogens. (62)

    • karen23320
      karen23320 janie27576

      Posted

      Hi Janie- Have you had your homones checked? I just had a whole panel to check thyroid, liver, hormones, autoimmune, etc. and mine came back with plenty of Estrogen ( 47 and period every 28 days), but that I had no testosterone- Dr said that is why I am so tired after a full nights sleep, no energy, no libido, unexplained weight gain, irritability, depression and anxiety. I thought it was the newly - diagnosed LS blues! I will start a very mild testosterone cream soon as I am already taking all of the libido enhancing supplements ( Zinc, Vit D and Omega3). 

      Good luck to you! 

    • janie27576
      janie27576 karen23320

      Posted

      hi karen, i have an appt. in sept. to see a vulva specilist  an hopefully i get my hormones checked . i am taking vitamins and feeling ok, i am goin to be away for four days going with all  my family to  the beach, i hope i can manage all my crap i have to do just to be able to fuction for the day.. but i guess it could be worse, i wouldnt wish this on my worst emeny...i will let you all know how it went out there....i want to try the crisco .. has anybody tried that to stay moist, i think it will stay moist longer then the aloe... anyway will let you know how it went for me..janie
  • janie27576
    janie27576 Nettie62

    Posted

    Hi Karen, so when do you have your appt. with Dr. Goldstein? pls llet us know how and what are tests he will do...he is very expensive but he helps its worth it.. Good luck and keep us inform..i wish i could go see him, I am thinking about selling my house and if i do you bet i will go see him.. i am in Houston Tx , where are you at? 

    janie

  • Ricey70
    Ricey70 Nettie62

    Posted

    Hello 

    I’ve also notice one side of my labia reduced. Because it’s fusing to the side of my vulva 

    This seems to be happening quite quickly 

    Has anyone used Borax ? Bicarbonate? Do these help the fusing / shrinkage 

    Omg I am so low about this right now, I honestly feel like I have been given this life sentence 

    A disability that no one can see 

    • Bridge_of_Sighs
      Bridge_of_Sighs Ricey70

      Posted

      Oh Ricey you will get there, honestly you will. It just takes time to find your own balance. I'm using Borax and it really helped. I only use the steroid for a boost now and again, literally a week once or twice a year, or if I am on holiday and couldn't take all my cabinet of potions with me. Just keep going, keep trying stuff, make sure you give each thing a good long time to see if it's working (I don't, I'm too impatient!). I found that Bicarbonate helped the Lichen, but irritated my bladder. Borax doesn't do that. I use a pinch in a 100ml bottle, any more and I'm sore. Others use a paste, we're all different. Avoccado oil is a lovely moisturiser, I alternate it with olive oil from the kitchen. I put essential oils in. Someone put up some old research that antibiotics had been shown to have en effect, so now I'm trying essential oils of palmarosa and turmeric which are antibacterial, frankincense which is good for the skin generally and chamomile matricaria which is soothing. I also use Epaderm ointment, a mainstream over the counter tub of eczema product, instead of soap. The borax has certainly stopped the fusing, I spary after every toilet visit, and I slather myself with oils day and night which feel nice and I hope they are doing something positive too.

      I know it's hard to keep feeling positive, but you can find a balance. I'm always better on holiday, even if I break my diet and can't keep to my routines, so do try to find ways to relax if you can. It will help.

      And don't forget you are not alone. We are all here to help and support you.

      All good things to you

      Bridge

    • Ricey70
      Ricey70 Bridge_of_Sighs

      Posted

      Thank you so much for your reply I really do appreciate it 

      Have you had much fusing? 

      So with the Borax you use this in a spray ? I was wondering how it should be used, baths, cream etc. I also just ordered emu oil which is apparently really soothing 

      My Borax should arrive this week 

      I can’t wait ! 

      I’m currently slathering on Vaseline just to keep the area smooth and lubricated so not to start fusing 

      Is this ok? 

    • Bridge_of_Sighs
      Bridge_of_Sighs Ricey70

      Posted

      Hi Ricey

      I've lost the bottom half of both labia and the top bits are really small. They seem to fuse into the wider skin too. The opening to my vagina has narrowed as the two sides of my labia have fused together from my clitoris to my urethra, and I was totally white everywhere when I was diagnosed. I use a 100ml spray bottle with a pinch of borax after every toilet visit. I've been doing this for two years. I now have kerbs/curbs to either side of my labia which weren't there before. I could hardly believe it when a seam started to appear, but there's definitely change there. I'm not white any more apart from two small patches which just won't go, and a really visible seam has appeared in the fused bit from my clitoris to the top of my vagina opening. The quickest pace of change was at the beginning. It is very slow. I keep thinking it's stopped changing but then every now and then I remember how much I'd lost and carry on. It's certainly not going backwards and I'm so glad for that. I've also got used to spraying after a toilet visit and now feel 'dirty' if I don't. I think it neutralises the urine. I recently spent a week in a place with a bidet - bliss! sadly my bathroom is too small...

      I also have to dilate which I try to do every other day.

      Maybe try olive oil - just the normal one from your kitchen will do, rather than Vaseline, your skin will absorb it and moisturise as well as have a barrier. Lots of people swear by coconut oil too, though that doesn't suit me.

      Keep reading, and you'll pick up lots of tips, this is just what I personally find works for me.

      Bridge

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.