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21 year old with lichens

Posted , 16 users are following.

lichensucks
lichensucks

Hi all,

I've not posted in many months. This condition unfortunately keeps me busy and often times, very depressed. I went back to the family planning practice who originally informally diagnosed me with Lichens. If you've read my previous posts, you'll see that this condition runs in my family (my mother who is 57 started up with symptoms after giving birth to me, her mom, the same)

Some background, I began to develop symptoms about 2 years ago, but most doctors I saw passed it off as my small size, history of yeast infections and UTIs, or as a mental response to my PTSD.

I used a steroid around twice a week on the effected areas. Anymore than that thins the skin and seemingly makes things worse. I take folic acid, probiotics, Minastrin 24 Fe and Buspar to lessen my depression and anxiety symptoms and encourage my body to heal.

I've also never been formally diagnosed, but have had "abnormal" bloodwork pointing to an autoimmune disorder so I try to avoid dairy, sugar and yeast and getting sick.

I've not been able to have sex now in over 4 months. My relationship is strained, but I rarely miss it just because of the physical and oftentimes mental pain it brought. My partner is in on my treatment and tries his best to empathize but usually doesn't know what to say.

My vulva is completely white. I took photos to track it and it started changing in December 2016 and already is white. It's so strange.

For the last 4 months, my anus has been itchy, turning white rapidly and I tear every time I use the bathroom. It's godawful.

And then in the last 3 weeks, I've developed what I can only say looks like a "horn" on my clitoris. It's fine somedays, but other days I feel like even the softest cotton is ripping me apart.

I've been on a wait list to see a dermatologist that accepts my insurance for 3 months. I finally see them Monday, but have been told I will only see a practitioner for the first visit due to the high demand for the dermatologist. I hate to say it, but I'm not even getting my hopes up. I feel like they'll send me home with more steroid cream and tell me to come back when I'm older for anything of a greater extent. That's been the song and dance thus far.

My period makes things worse. Does anyone else feel like they're allergic to their own blood now? My birth control helps to lessen the length, but the three days after are so bad. I burn, itch and feel like I'm on fire.

I have been taking Epsom salt baths, but have been too scared to use Borax with my sensitive skin. I see a lot of people benefited from this method. USA folks, where did you get your borax? What kind? Did it hurt your skin and how do you rinse when finished?

I'm so tired of this and I know it's just the beginning. My psychiatrist wants to put me on an antidepressant because he thinks that my mental health has made my lichens worse. I think it's the other way around.

I will let you all know how Monday goes. I'm open to any suggestions.

0 likes, 36 replies

36 Replies

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  • ann67814
    ann67814 lichensucks

    Posted

    Just a comment that LS is a skin thickening problem therefore it is fine to use the steroid regularily as long as you are on the weaker strength.

    You sound to be having a rough time.

    Good luck.

    • lichensucks
      lichensucks ann67814

      Posted

      My skin near my frenulum and anus is thickening, however, the skin around my vulva is thinning/tearing. It's a bit of both for me. Unfortunately, I seem to have a bad reaction to overusing my steroid cream (it is low strength), so I have been advised to only use it 1-3 times a week or else it makes things worse. I'm hoping this dermatologist has more knowledge and can explore alternative steroids. It doesn't seem normal for it to cause thinning of the skin and burning, but I've read a lot of accounts on here where women are experiencing downsides from their medical treatments. It's a shame. Thank you for the well wishes.

  • mary09950
    mary09950 lichensucks

    Posted

    I am sorry you are having a bad time.  Are you using any moisturizer?  Very important!!  When you started using the steroid did you begin using every day for a couple weeks and then taper down? My doctor suggested a bath in Aveeno oatmeal bath.

    You might try an anti histamine if you have itching.

     Try not to stress. 

    Your gynecologist should give you better advise when you see again.

    • lichensucks
      lichensucks mary09950

      Posted

      Thank you! No, I haven't been using any moisturizer. I've been hesitant to put anything more down there except the steroid cream as I've had a bad allergic reaction to Emu oil. I may try coconut oil after seeing the dermatologist. Yes, I used the steroid daily and then tapered down.

      I have tried oatmeal baths, but I normally only get relief for up to a few hours. I will ask about an antihistamine. Most my issues seem to be inflammation and stress triggered, so that might help!

      Not sure when I will see gyno again. She is the one who sent me to a dermatologist. I may go back if he's not helpful and try again.

  • Guppy007
    Guppy007 lichensucks

    Posted

    Hi sorry to you are struggling..

    I can only offer a few suggestions that you may or may not have heard of before.

    Try the Borax, as it does appear to work for many of the women that post on here, and quite honestly it can't be worse than using the steroid which as you say is not great.

    Look at maybe taking an antidepressant because I do believe that if you are very depressed it will exacerbate this condition.

    Cut out Gluten if you haven't already done so..many find that that is the key and often are a lot better afterward.

    Can you change your birth control?  I'm not convinced that is great for people like us with skin diseases.  Also what about trying a menstrual cup that would avoid pads etc.

    Try to avoid sweet stuff, that means carbohydrates as well, reduce them as they turn to sugar..really, sugar is one of the worse things for LS.  In the past, a couple of glasses of white wine can set me off itching!

    Sex is tricky, no denying that.  I found using a dilator coated in K Y jelly and inserted before sex makes things go a LOT easier.

    Good luck Monday

     

    • lichensucks
      lichensucks Guppy007

      Posted

      Thank you! I think next week I will try a Borax solution spray to start since its oH balance is so extreme and after a few weeks move onto baths. I definitely am excited to see if it helps since it's helped so many others!

      I see my psych in two weeks and plan to tell him what's going on and see if there's anything I can take. I can't swallow pills and they discontinued the patch, so I'm pretty suck with this option of birth control for now, but it isn't strictly progestrin. Menstrual cups don't work for me, so I use super thin sensitive skin panty liners. My period is really light. Thank God!

      I'm hoping to do better at cutting out more gluten, dairy, sugar and carbs, but lately it's my coping skill. I know it doesn't help the condition so it's a vicious cycle. I will try a day at a time.

  • Anna777
    Anna777 lichensucks

    Posted

    Hi, I have never used Epsom salt baths, so I have no information on their usefulness.  What I can tell you is that I found healing and relief with baking soda and borax.  I put 1/3 cup of baking soda in a tub and soak in it for about 20 minutes.  I also soak in 1/6 cup of borax in a tub on alternate days.  On days when I use the baking soda, I swab my vulva with a saturated solution of borax. I started out doing that twice a day, then cut back as I started to heal.  Please read the ENTIRE thread, "An Experiment with Borax" for important details and feedback.  I"ve been doing this for over a year now and all the white areas have returned to healthy pink.  Fused areas have unfused, and the relentless itching and burning is gone.  I do not use steroids.

    As for your questions, You can buy borax in the US in the grocery store in the laundry detergent aisle.  You can also buy it on line, but that's more expensive.  Borax is only sodium borate (or sodium tetraborate) a natural occurring mineral.  If you are afraid to try it, go on line and research it.  It has many uses.  It didn't hurt me, and I don't rinse it off.  Don't be afraid to try it.  If it bothers you, you can cut back on the amount and try again.

    I do know that stress makes everything worse, so if you feel you need to take antidepressents for 6 months or longer, it would probably calm you down and help the healing process.  Just know that there are a lot of us out here who have found healing with borax and baking soda, so you will get better.

    • lichensucks
      lichensucks Anna777

      Posted

      Thank you so much. I will give a Borax spray a try and then if I respond naturally or well, move onto a bath. I appreciate it.
  • BARBARA1954
    BARBARA1954 lichensucks

    Posted

    Have you seen a gynecologist?   I'm just wondering because you just mentioned seeing a dermatologist.   I have has LS for a couple of years.  My G P sent me right over to see a gynecologist.   He is in his 60's.  He took one look at my vulva and an us and told me it was LS.  Boom, just that fast.  I have been using clobetasol.   At first it was every night for about 6 weeks.  Then down to1-2 times a week.  It is helps to not wear under pants, except when you absolutely have to.  I hope you find relief soon.  I am I terested to hear what you find out.

    • lichensucks
      lichensucks BARBARA1954

      Posted

      Thank you for your reply. My gynecologist is actually the one who told me to go to a dermatologist. I'm not sure why, but they couldn't test me there and put me on a 0.01% Triamcinolone Acetonide Cream I'm to use twice a week to three times max. She did say she without a doubt thinks it's lichens.

      I have heavy discharge, so I can't go pantiless, but I recently invested in 100% cotton low seam underwear and it's a Godsend. I go commando at night though. Better feeling than taking your bra off!! Lol

      Thank you for your support.

    • BARBARA1954
      BARBARA1954 lichensucks

      Posted

      That's really strange she wouldn't know what LS is.  My gync took one look and said you have LS.  He is about 65 or so.  He may have seen more of it than your gync.  I asked one dermatology clinic if they had anything to do with LS and they said no.  So I don't know what to say.  I trust my gynecologist. 

    • sue162
      sue162 BARBARA1954

      Posted

      My gp had never heard of L S Barbara, I suggested it last year to her so I took myself to the GUM clinic and she straight away said it was L S and got referred to hospital.  They say it isn't common but at hospital the consultant said every one he has seen today has had L S 

    • BARBARA1954
      BARBARA1954 sue162

      Posted

      Where do you live?  As far as I know those of us that live in the  U S don't get sent to a hospital. 

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