Feeling low and worried

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Hi everyone, 

I'm feeling really low at the moment. Diagnosed in January at the age of 28. It all responded well to steroid cream. I was told by dermatologist I had some obvious issues with clitoral hood that I wasn't even aware of but I death with that and felt ok. However it's all flared up. 

Looking in the mirror tonight and I feel like I look totally deformed. My hood seems to protrude out of my labia when standing up everything feels really small and in the last few days it looks like my urethra is closing over. I'm devastated. 

What do I do? I don't have my dermatologists number do I speak to my gp? 

I absolutely hate hate the way I look, I don't feel attractive at all I feel like a freak. We would love a second child but I don't know how we can. My perfect little life feels like it's over. I can't see passed this crappy condition or how I'm supposed to live with it for the next 60 odd years. 

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8 Replies

  • Posted

    Hi! I was diagnosed just after my 27th birthday (which was only last November). I know how you are feeling. It is difficult but for me everything has been manageable with treatment. I use Elidel most of the time and the steroid when things get bad. I haven't had any of the physical changes other than it turning white but I have had the tears pretty bad. I've learned to accept it is what it is but it still is upsetting. I worry about menopause and how that'll change it. My biggest worry is because I'll be on meds for so long they'll stop working or something. Like my body will get used to it. I'm not very familiar with this website but if you want you can to try to private message me or something so we can stay in contact.
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  • Posted

    hello...I am responding to you because I am so sorry you are having such a rotten day.  My best advice is to please do not give up reading all the posts on this board.  Go back right to the beginning and just read and read.  You will find support and actual help and lots of suggestions to make this LS easier to deal with.  I have had similiar depressing days as  you describe.  And the fear of my bottom closing up and all the rest.  I think that is a bigger fear and worry than even dealing with the pain of flare-ups.  You will read that you can use a dildo with lots of coconut oil or emu oil or another organic, no chemicals, oil...to keep the opening open and stretched a bit.  Lots of people here have success with cutting out sugar and coffee...some have found other food things cause a flare-up for them.  I know when I was able to almost eliminate sugar, my bottom had no issues at all.  (the past couple of months I have not been able to have a good diet, tho. and I am paying for that now)  I guess I just want to encourage you and let you know there are things you can do to help  yourself.  I have learned much more by reading all the posts on this forum than either of my drs. told me.  In fact, my drs. didn't tell me anything except how to use the steroid.  I was diagnosed more than 2 yrs ago, although I have had LS for many years, I just never thought about it or even wondered about it.  (I like to deal with things by pretending they don't exist I guess.)  But two unbearable bouts, two years apart, with what I and the dr. thought were extreme yeast infections sent me finally to an ob/gyn to be diagnosed and a biopsy confirmed LS.  I had never heard of it, and when the dr. said I needed to be on the steroid for the rest of my life "so I could pee".....I almost fell off the examining table.  What?? No pee?  What was she talking about?  She never explained or anything.  So I went on the internet to find out what was going on and I found this forum.  I check in here every day and am still finding out things I can do to help myself.  You will too.
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  • Posted

    Hello!!

    First of all i am sorry you feel like that..i felt like that too...but all gets better after treatment, you can reverse all and feel better soon.

    After i got diagnosed i felt the same, i thought the treatment was not helping...but give it some time...it works.

    Also i went to visit my accupunturist and helped me a lot.

    BUT, the best you can work on is your diet, i started a diet with no grains, diary or sugar for a month, check the whole  30 diet...my LS is 90% gone...hope that can help you feel better. Good luck!!

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  • Posted

    I'm really sorry your having a bad day. Unfortunately with this disease with all feel the same sometimes I describe it as feeling lost. I would get back to your routine, of steroid cream make sure your using your barrier cream and see if you have any triggers in your diet, one of mine is wine.

    I really hope it gets better. Have you heard of the Mona Lisa touch treatment, some ladies on here have had a good response from it. Xx

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  • Posted

    Hi there! I am so sorry you are feeling so low at the moment. I know exactly how you feel- I am 25 years old and feel that I am way too young to be dealing with this but unfortunately these are the cards that we have been dealt. The way I deal with these tough days are that I just think that things COULD be worse. Although this skin condition is absolutely terrible at times I believe it can be managed. I have my clitoris fused over and it is something that is devastating for me but I know that most men don't pay much attention to that. Your partner loves you for you- remember that. I wish you the best.
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    • Posted

      Well said Nicole,  things can be worse.  We do tend to give this condition more attention than it warrants, but this is totally understandable giving the area that is affected.  I had this condition for many years before diagnosis.  I recall tearing in my early twenties and being terrified to give birth for fear of tearing badly.  I am now 59 and I can say these things that may help.  My Ls went into remission at times and I had long periods when it was really calm, like when I was pregnant and funnily during the menopause, although not everyone is this lucky.  Remember that treating the condition and regular moisturising are so important along with keeping things prestine.  Finding your own triggers and methods of treating are so important.  Good luck...
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  • Posted

    Hiya,

    I've just come across this forum by chance.

    My daughter is ten years old (that's right, ten) and was diagnoses with this aged seven after years of pain/inflammation/bleeding/discharge we finally saw a top pediatric dermatologist who diagnosed lichen sclerosis.

    She finds this condition really difficult and embarrassing. She is suppose to take topical creams to school for after using the toilet yet is too embarrassed. So she often has flare ups. I try and explain how important it is to manage this condition and her consultant has said that if she learns to manage it from this young age along with her yearly check ups, it can be a good thing as most are adults before they find out (my Mum has recently found out and she's nearing 60!),by which point scar tissue has built up etc.

    Does anyone have a child with it or was diagnosed young?

    I don't mean to jump on this post. My daughters dermatologist is excellent so I would definitely recommend you make an appt to see yours and visit your GP also. My daughter has about five different lotions/potions to use for everything from washing, for daily use,,after the toilet, during a flare ups and just as a just in case! Feel better soon

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    • Posted

      Hi Mrs O,  I was not diagnosed young and was is my 50s' before diagnosis but I have read from others on this site and from my own research that children can recover completely from this condition.  There is a great need to treat the condition to prevent long term damage.  I have a pretty makeup bag with small travel pots of my creams inside along with a small spray bottle with a pinch of bicarbonate of soda in water so that I can wash in private in the toilet and pat dry with paper.  I found some small pen shape hand sanitizers in a pound shop that I emptied and filled with water etc.  This just looks like a normal hand sanitizer if you leave that label on.  I know kids can be nosy in bags but if there are no labels on things she may find that easier and to tell anyone who sees them that they are moisturisers for her dry skin.  There would be no need to say whereabouts. She could even use a pencil case for this purpose.  It is so sad to read of youngsters with this condition. Hopefully she will be one of the lucky ones and recover completely.  
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