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

Update post

Posted , 10 users are following.

alyshia20498
alyshia20498

Hi everyone!

I just wanted to make a quick update post for folks since it’s been 3 months since my diagnosis. I am 24 years old with mild symptoms of LS at time of diagnosis through biopsy. I only had one white spot and some slight itching that i thought was a reoccurring yeast infection until I found out it wasn’t. I was initially prescribed clob for every day for a week then 2x a week for 6 weeks then when needed. I had a bad reaction that just caused some sensitivity and almost like some under the skin cysts around the vulva area which were painful. I discontinued use and just tried to keep moisturized with coconut oil morning and night and used cetaphil eczema wash for vulva cleaning which was fine for a few weeks.

About 3 weeks I had I think my first ever flare up where there was rapid fusing and growing white patches around my clitoral hood and I noticed one side of my inner labia almost starting to disappear into my skin. The itching had increased too. I was freaking out snd out of desperation began to use the clob again but with tips from this site including a small amount and rubbing it in 3x a week. I also did a few other things which I’ll list but I’m happy to report (knock on wood) that all of the fusing has stoped and even reversed and most of my white patches except for the first one have disappeared. I am going to list what works for me and hope that it helps some of you who struggle with diagnosis and don’t always have access to a whole food organic clean diet. I am hoping to hear more young voices that have been diagnosed as we face different issues than someone who may be post menopausal 

1. Clob 3x a week in a small amount, rub in for 30 seconds on each side of affected area.

2 To explain this in the best way possible: I stretch my clitoral hood before I plan to apply the clob. I was reading up on clitoral phimosis (which is the fusing of the clit) and some of found that pulling and stretching in a comfortable way around that area prevents and reverses fusing. I do not apply while stretching, just before. 

3. I always pee after applying clob almost like you should after sex. I found it clears my urethra of any potential clob and makes the area less sensitive. 

4. I still put organic unrefined coconut oil on morning and night to help keep moisturized. 

5. I have began dilating with a dildo as pain during sex is a huge scare for me and I’m not currently active. I insert it at night once a week for at least 30 minutes to help keep my opening from atrophying. 

6. I now take a multivitamin and probiotic supplement that I think is the biggest factor besides the clob in terms of results. I am not very good on my diet other than trying to avoid more gluten and I’ve found that even if I drink beer or eat sugar I don’t really have flare ups anymore. I think it’s because it helps balance bacteria in my gut. I use women’s daily multivitamin and probiotic at 40 billion CFU. They are certified organic, non-gmo, gluten free, soy free, vegan, derived from whole food supplements. You can find them at target although they tend to be sold out and you can also buy them on amazon.

I hope this helps anyone who needs it. This forum has really helped me and I will continue to update if this method stops working for me.

4 likes, 7 replies

7 Replies

  • Ricey70
    Ricey70 alyshia20498

    Posted

    Thank you for taking the time to do this 

    It’s much appreciated 

    Good luck staying flare up free

  • jacqueline96242
    jacqueline96242 alyshia20498

    Posted

    Thanks for the tips Alyshia. I’m a lot older than you , but you have raised some issues I have been worried about . And it had been very helpful for me . Funny enough I was going to try pro biotic capsules. Let’s hope it will help . Good luck to you . I feel for you because you are so young 😒. 

  • karen23320
    karen23320 alyshia20498

    Posted

    Alyshia- So hlad you were able to recognize what was happening and find steps to help yourself. There os so much useful information on here and it’s hard to know what works about wgat doesn't. 

    The only other recommendation I hv is from Dr. Goldstein’s webinar where he talks about rubbing in the Clob fir 90 seconds to deepler penetrate the layers of the dermis and get to the attacking T- cells. If you rub for only 30 seconds you are applying it topically ( on the surface), and it will help with white patches, but not get deep enough into the dermis. 

    Hope this helps! Good luck to you! 

    • janie27576
      janie27576 karen23320

      Posted

      hi karen, on the 90 seconds do you do it also with the emuaid max too? are you doing the clob and emuaid the same day or do you skip ...i wonder if if i should do that with the emuaid  since i havent used the clob yet...

      janie

    • karen23320
      karen23320 janie27576

      Posted

      Hi Janie- The 90- seconds is just for the Steroid ( whichever one you are on).The Emuaid Does mot need to be rubbed deeply to penetrate. I use the Clob only on the white patches on the inside of inner labia. The Emuaid ( Ido not use the Maxx as it is very strong with tea tree oil, I only used that for first 10 days ) I use on the outside labia, a littke on clitoral hood and sometimes on perenium, anus hole if they feel itchy/ or tingly. 
  • janie27576
    janie27576 alyshia20498

    Posted

    hi alyshia,, that happen to me too the first time i used the clob, i got a bad yeast infection so and the Dr. didnt tell me to keep on useing it so i stopped and i was good for a long time and then i got a flare up and thats when i started fusing..but i havent used the clob anymore cause i am afraid i will get a flare up so i have been doing the Aloe with turmeric oil mix that Nancy here told us and that is workig for me ...hope you contuniue to feel good ..janie
  • beverly52803
    beverly52803 alyshia20498

    Posted

    I was prescribed Triamcinolone Acetonide, not clob. Used it nightly for around 2 months then reacted with inflammation, burning, etc so have stopped until I  hear back from gyn. I am way past menopause and am now using hormone cream for AV.

    Was experiencing a sporadic vag itch so  had gone to the doc for a flagyl prescription as I assumed an infection. Was then diagnosed with the LS. She claimed it was causing what "seemed like an internal itch" which sounded far fetched to me. As the itch did not subside I called and got the flagyl. Itch stopped immediately, but returned slightly. Decided to try probiotics for women. Was alternating orally & vaginally, but now only orally. I think it may be working, but have not finished the month's worth. As they cost $30 I'm not sure I will take them all the time. I do drink kefir every day and that has a good deal of probiotics being a fermented food.

    I have taken all sorts of vitamins and supplements in the past, but never noticed any benefit in general. Are you confident they are having an effect or could it be primarily the clob that has helped you?

    I fail miserably at trying to go gluten free. I used to think it may have been causing my IBS, but the kefir has solved that. I do avoid a lot of sugar and have for many years.

    No one here has mentioned sea buckthorn. Anyone try that? I was about to as someone on an AV thread it is good for mucous membrane.

Back to top

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.