Lichen Sclerosis - \"Can't stand it any longer!\"

Posted , 2 users are following.

:oops: I've suffered from LS since the birth of my son - 27 years ago...

To begin with my GP used to say \" Please don't show me that again!!!! as had no idea what was wrong with me, but I wanted someone to help - ANYONE!!!!

So I suffered in silence, not even having a drink at Christmas times etc, as a drink made you want to go to the toilet, and that hurt - so you don't drink - ANYTHING!!!

Have sat on the loo and cried and cried so often!!!

A friend who did reflexology on me once said \"I was like a cactus in the dessert - had no liquid in my body!!!\" - \"Wonder Why?\"

Had to be restitched after my first son 3 times... damaging more and more of the skin tissue. Than I had another son... who is now 11 and yet again had to be restitched twice.

Life \"DOWN THERE\" is a misery!!! My husband is so very, very supportive and says he wishes there was something he could do to help, when I'm crying yet again!!! and saying \"I CAN'T STAND IT ANY LONGER!!!\"

My GP took years before arranging for me to see my brilliant skin consultant... - at last someone who put a name to what I'd got, listened to me and believed me and could help - thank God.

She is wonderful, sympathetic and listens-------- but can only give me steroid cream....... (which I dislike intensely because it - yet again - thins the skin!!!!)

My LS has spread over the last 2 years to my anus... and boy - now a double whammy!!!

~ ~ ~CAN'T STAND IT!!!! ~ ~ ~

I have auto immune disease and also have vitiligo over many areas of my body and suffer from alopecia - being totally bald 4 times - used to be stress related.... no wonder!!!!

Have unfortunately passed the LS on to my oldest son, but much easier to treat in a man - thank goodness, so hasn't caused him too much of a problem.

Wouldn't wish this \"CURSE\" on my worst enemy!!!

Think it has helped to put my feelings in writing here.

It's not all doom and gloom, I'm a very cheerful person, who is full of life, and lives life to the full... at 51. I work full time with a child with Down's Syndrome. I have chronic asthma, but that doesn't stop me..... do the Race for Life for Cancer Research every year, all 5K of it, and at Christmas did the Santa Jog for the British Heart Foundation.

Know things could be a lot worse.... but to live with this LS - it's a pain in the .........Sarah.

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7 Replies

  • Posted

    Hi Sarah,

    I've just read about your experience and sympathise so much with you. I was diagnosed with LS only about 18 months ago but it has been hell. I became ulcerated on both sides of my vaginal entrance and like you it was round my anus as well. My perineum was split and I just dreaded passing water. After getting over a punch biopsy as well my consultant gave me the usual steroid cream which burnt. At the six month check-up appointment she changed my cream to a different one and that was even worse! After two days of burning like hell, I threw the cream to one side and told my husband I was not using it any more. I have done what I feel best and I have started having salt baths morning and night (sea salt) and used Boots Lubricating Jelly which is waterbased. I have boosted my immune system by drinking daily doses of Aloe Vera Juice, taking extra Vitamin C, Omega 3,6 & 9 and B complex. Within 2 months I am no longer ulcerated, I don't burn, and I have had intercourse for the first time in months! I feel 95% better. I hope this gives you some hope that maybe it can get better. Jodi

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  • Posted

    Hi again,

    I omitted to say in my last entry that I allow no soap products to touch my genital area. I have salt baths morning and night but with only clear water. When washing other areas, I stand up in the bath so I don't lay in soapy water. I no longer have a problem with the horrendous itching. Jodi.

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  • Posted

    Hi Sarah and Jodi

    I've only just found this site - I'm amazed so many of us have the same condition!

    I was first diagnosed nearly 30 yrs ago - now coming up to my 50th birthday!

    Been through hell and back with it over the years - off work at the moment with a flare up - the pain is $%£\"%\"% - you know what I mean!

    Jodi I am going to try the aloe vera - never heard of that one before. I'm also going to look into a few more creams people have mentioned.

    Keep in touch ladies - YOU ARE NOT ALONE XX

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  • Posted

    [color=black:4f33b91a1a][/color:4f33b91a1a]hi! Jodi Ive just found this site after feeling my doctor is not listening to me.I had a biopsy 10 years ago and was just told it was fine. no treatment. suddenly im ulcerated and im being sent for another biopsy Ive said i know what it is i just need advice to heal it and am getting nowhere. can you tell me how long it takes to heal if you are ulcerated? seems to be taking forever! Ive read about your salt baths and am going to try that so thanks but I wake up with it and go to sleep with it and its sooooo depressing!


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  • Posted

    Hi allie

    I'm still off work with my latest flare up - it's been 2 weeks now of pain - off to the hospital tomorrow managed to get a cancellation so I'll see what they can come up with. I'm using Fucibet cream from the gp at the moment and it seems to have calmed it down a little. Going to the loo is sooooo painful!


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  • Posted

    Hi Allie,

    Within 2 weeks of sea salt baths I was showing signs of improvement. I think it is the combination of the baths, aloe vera, vitamin supplements and no steroid creams that has helped, perhaps not just the salt baths alone. Don't let any soapy bubble bath stuff near you either! I have also cut out (well almost!) fizzy drinks and just drink lots of water now.

    Good luck. Let me know how you get on.

    Love Jodi

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  • Posted

    :D :D :D :D Hi girls, (Sarah here) thanks for your replies. I have had salt baths for years and am a great believer in them. I also bought a portable bidet and put warm water and salt together in that to wee in and it does help - but do be prepared for it to sting a bit.

    Definately do not put any soap near my \"down below\" :oops: :oops:

    have given Omega 3 a go - really to help me \"keep my mind!!!!\" and ahve done vitamins - until I get fed up fo taking them. :P :P :P :P will give the Aloe Vera a go though .... no harm done in trying something new.

    The last cream my consultant gave me was Epaderm which has been created by skin consultant for babies with terrible excema in the nappy area. Worth trying if everything else fails. :wink:

    Haven't cried on the loo recently which is a blessing!!!! :roll: :roll: :oops:

    Know it's a lot worse if I'm no feeling 100% well. sad Great to hear from you gals..... definatley makes it more bearable - but I truly wish that none of you had this dreaded \"curse\" Wouldn't wish this on anyone.

    :D Wear a smile it's well worth while, if you sad frown things get you down!!!! :wink:

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