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Lichen Sclerosus

Posted , 18 users are following.

SallyAnn63
SallyAnn63

I'm so relieved to find an online voice to be able to express my utter despair and sadness around this humiliating condition. I have a wonderfully caring and loyal husband who would chastise me for my feelings of indignity now that I am forced onto sharing details relating to my deteriorating and painful "Lady Garden". I absolutely hate the fact that I have to say no to sex, no to an evening walk, no to a bike ride up to the pub. That all the sensual mystery and allure is gone, due to the clinical facts and diagnosis of this most unladylike and debilitating condition. I feel stripped of my femininity which hurts me more than the hot-coal between the legs burning pain which strikes so hard it reduces me to floods of tears in Tescos car park.

1 like, 46 replies

46 Replies

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  • Pansy_Twofoot
    Pansy_Twofoot SallyAnn63

    Posted

    Hi Sally,

    Oh I do understand exactly how you feel.  I've known there was something wrong, but I don't often take a mirror to peek.  I had seen doctors and occasionally was told to use the Clobetasol for the itch, without a diagnosis.  I was diagnosed nearly two weeks ago and I told my (adult) children.  I mentioned it vaguely to one friend, and I felt ashamed and humiliated.

    My husband has been wonderful and understanding too.  But this diagnosis is just an attack on your psyche and feminimity.  I hope knowing that you are not alone helps you in some way.

    • SallyAnn63
      SallyAnn63 Pansy_Twofoot

      Posted

      It helps me enormously Pansy, thank you, I hope it's the same for you too.  I've cried to my husband about the indignity of having a problem in the most intimate part of my body, but he said that to him; it's like an arm or a leg, no big deal that it's my lady-parts. He's a wonderfully supportive and loving man and I'm very lucky to have him, but deep down, you can't help feel unfeminine. 

       

    • Pansy_Twofoot
      Pansy_Twofoot SallyAnn63

      Posted

      Hi SallyAnn63,

      I had a late menopause with just hot, hot flashes, generally in times of stress.  I was a single mom with 3 teens at the time, how can I not be stressed?  Lol.  I finished my last period when I was 55.  I don't feel unfeminime  at all.  I guess it hits people differently.  I had no mood swings, but my belly did blow up at times, as if my period were going to come, but I stayed that way for quite a while, but it did subside.  I did gain weight, but I was going through neurological issues due to former injuries and became completely disabled.  At times, I couldn't walk.

      I know after menopause, I lost my youthfulness, but I still feel like a "hot tomato"!  I know who I am, who I love and who loves me.  I haven't had trouble with intercourse, as you've had, which is probably why you feel the way you do.

      My hubby has had some prostate issues and we have not had intercourse recently, but we still have the desire.  I've lost a great deal of weight, deliberately and recently.  I no longer look like I ate myself, I'm closer to how I used to be, and I'm feeling desirable.  Although, my husband prefers the "fat" me.  I'm on the mend now and I anticipate some action soon.  I don't see my labia minora, but I honestly don't ever remember seeing it.  I must have a small one.

      You sound like you've had a difficult menopause, and I'm sorry for that.  But you need to think about the man who loves you, for better or worse, and this is part of the worse.  He's supportive and loving, that alone should make you feel desirable.  Perhaps you may need an anti-depressant to help you through this time, ask your MD.

      It is so nice to talk to someone across the planet, having the same thing, and some similar issues.  I read somewhere that there is a special honey and raspberry leaf tea helps resolves some symptoms.  Also organic emu oil, coconut oil and vaseline applied topically, helps resolve the tissue problems.  I got on Amazon and ordered all the stuff today.  I'm going to give it a try and I'll let you know.

    • lynne1945
      lynne1945 Pansy_Twofoot

      Posted

      Great post.

      I too have a supportive and loving man and to me that was the single most important factor in my getting over the initial shock and eventually the whole "why me" depression.  Of course sometimes I still go there but I keep trying. For me and him. We had to stop the full sex thing 10 years ago, some might think at 60, well that's no big deal but now at 70 we still would if we could! Never mind, there is more than one way to skin a cat! He still finds me desirable and so I feel desirable.

      The women I truly feel for most are the many without partners!

      Some are lucky to have a sister or close friend. As for me, my sister I thought would be empathetic was shocked and embarrassed and so we avoid ever mentioning it. I don't blame her, it's tricky. She can't help me so she feels helpless I guess. 

      The people on here and my hub and my dermo are my support. I don't know how or if I could have coped without all in the early months of diagnosis. 

      Antidepressants will continue to take the edge off my occasional panic and self pity as long as I need them and if that's forever, well so be it. 

      Organic coconut oil, emu oil, there are many soothing creams and lotions and some people find diet to be very important. I learned about sugar right here, on my first day of joining, and how bad it is for many people with lichen conditions. It helped immediately to eliminate sugars (which come in many forms I learned!!) 

      I lost loads of weight too, a side effect of my extreme stress and no sugar!! , but now I am happy for it as its diminished my chances of getting diabetes from quite high to zero. Plus other obesity related diseases. So I look on that as a positive.

      Good luck and better health to all.

       

  • lauren33630
    lauren33630 SallyAnn63

    Posted

    Hi Sally - just remember you are not alone. I think the worst thing about this condition is the mental havoc it can play on our minds. It is absolutely unfair and at times it is miserable... but it could always be so much worse (I used to tell myself this about my other health woes before LS came along - and boy I was right haha!) 

    Try to keep a good sense of humour and to not let it dishearten you. During flare-ups it can be particularly hard to stay hopeful but I think over-thinking and worrying about what if's only causes stress and stress is soooo, so bad for your LS. 

    Remember when you need support there is a forum of understanding ladies (and men) to reach out to.

    • pam33532
      pam33532 lauren33630

      Posted

      Thank You so much Lauren, this morning these are the words I so needed to hear.

      The tricks it plays on your mind the over thinking. Yeah we all know it's not good for us but boy does it try it's hardest to make us struggle.

      Tears make you feel better for a bit, but then I think get a grip woman things could be 100 times worse, the head goes up the fake smile gets painted on and life continues.

      Thank You again xx

    • lauren33630
      lauren33630 pam33532

      Posted

      No worries Pam... It's okay to be upset and angry about it sometimes. Right now I'm just over the hump of a pretty bad flare-up and have spent the past week inwardly shouting at this horrible disease and going over every possible thing I could be doing better. 

      But we are all in this, and we will overcome each flare up and face whatever life throws at us. Stay strong smile

  • pam33532
    pam33532 SallyAnn63

    Posted

    Thank You so much for posting this. I've been having a roller coaster couple of months, feeling alone, not being able to talk to anyone except the dermotology team (who are fab). Like others here I have the full support from my husband but sometime when I'm feeling low it is a case of why are you even here? You could find someone normal and have a normal life again. Thankfully during those moments he has the strength to cuddle me and we talk things through (again) and I can cope again (for a while lol)

    Finding this forum this morning has almost had me close to tears, finding people who are going through, have been through and are all here for each other to deal with things.

    I think my issue is when I got told back in August last year I had LS it didn't sink in, all the dermotolgy consultant and nurses kept saying was it's not curable but it's manageable (probably because they saw right through my denial, they have been angels and I cannot fault them one bit) Having Coeliac and avoiding gluten for 8 years I thought hey I can deal with anything. A couple of months ago I realised this is a completely different ball game.

    I have to say the lady who said about the mental havoc - You are so right in everything you say. Just when you think ach it could be so much worse WHAM!! another flare up of one condition or another. Trying to think positive is all fine and dandy it's the trying to smile through those moments I sometimes struggle.

    Thanks again guys for letting us all know we are not out there alone xx

     

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