No itching, is it LS

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I was diagnosed with LS nearly a year ago.  I do get sore cracks, kept under control with steroid cream.  I am not aware that I have had any of the other classic symptoms, no white spots, no itching.  Most of you on the forum complain of severe itching.  If my skin cracks it stings when touched but clears up pretty quickly with the steroid.  My biggest problem is my clitoris which constantly feels as though it has red hot pins in it.  This gets worse at night and can keep me awake.  Just inside my vagina burns if I attempt to have sex, and on a recent holiday in the Med the strong salt water burned keeping me awake until I took painkillers and twigged what the cause was.  I have an under active Thyroid and feel because of that and the cracking I may have been pigeonholed.  I have a Dr appoinment tomorrow and am trying to do as much homework as I can.  I saw a vulval health consultant last October who gave me a hand out and told me I wouldn't be able to have sex, then SHE said goodbye.  Thinking of going private.  I'm in south wales.  Anyone know a good consultant, I don't mind travelling, anything to stop the burning, and to be able to make love to my wonderful husband.  Thanks for 'listening'.

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  • Posted

    I'm also in Wales and have had several biopsies - all of which proved negative for LS and squamous cell cancer - but the problem still remains and is only controlled via Dermovate application; this has to be rather too frequent for my liking.  I have had a similar rather vague communication with consultants at the hospital ( in the North) and have asked for a second opinion.  I cannot afford private treatment and feel that we have already all paid for the NHS through work contributions.  If the next consultant is any good, I'll keep you in particular posted in case you could travel up this far.  I'll PM you with specifics, because I'm sure the moderators would object to names etc.  Good luck - this is a good forum and you will get plenty of advice and reassurance.
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  • Posted

    Hi Red,

    It does sound like you probably have LS. Depending on your age and the specific reasons the consultant said you couldn't have sex, it may not be true. If your vagina burns, is it because atropghy has made the entrance too narrow? That's my problem. Then the friction stirs up a yeast infection.

    I've had LS all my 62 years, but was only diagnosed last summer.

    If you were prescribed Dermovate, you're not meant to use it just to get rid of the cracks. It's a very low, steady dose. I use it Monday, Wednesday, and Friday nights now, up from nine months of every third night. A 50 g. tube has lasted me a whole year.

    Are you moisturizing like mad? We all talk about oily creams like health-food quality coconut oil. You shouldn't wash with soap or wear tight or synthetic pants.

    I had a strange tightness that in my ignorance manifested as arousal over my clitoris around menopause. What was happening as the hood was fusing over it. Then last summer it got very sore and swollen – there was a big boil right under the fused hood.

    You want to be using a shaving (magnifying) mirror to keep an eye on changes.

    According to many women here an underactive thyroid is often one of their other auto-immune problems. I wouldn't jump to the conclusion that it's cause-and-effect, though. There's no evidence.

    One thing that for sure causes burning for me the very next day is a big serving of white sugar in anything, or chocolate. Various women here have things they thing they should not eat, but sugar seems to be common.

    Hope this helps. You really should be able to get it calmed down. I think you live near a place where one member saw a therapist who helped a group of LS patients with sex. There is surgery, but if you do a bit of internet research you'll see that the scarring usually sets you back again. Then there's (expensive) stem cell therapy in Italy.

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    • Posted

      Hi Morrell

      thanks for your reply.

      I have been prescribed Clobestal (sp?) with instructions to use it twice a day for two weeks, then once a day for two weeks followed by 2/3 times a week or as needed.  I am picking up that it is more usualfor those initial periods to be longer.  Most of the time using it 2/3 times a week keep the cracking under control.  I don't get other sorenes unless something provokes it, a cycle ride, constipation etc. I only use epiderm to wash, undies are only washed in plain water.  I make sure my hands aren't contaminated with anything before putting cream on, use loads of coconut oil, I don't use soap anywhere on me and wash my hair separately.  It's the burning sensation in my clitoris that is the biggest issue.  I am going to be doing a check tonight, I would love to find a boil, at least I would have an explanation!  My vagine has burned during sex for years and was put down to the menopause, HRT cream helped tremendously until about a year ago.  The vulval consultant dismissed it as being the result of my initial auto immune problem and said nothing could be done about it.  The white sugar/chocolate thing is interesting, I don't have much white sugar but I do hot the chocolate in times of distress - like now.  I will be strong and avoid it to see if it makes a difference.

      many, many thanks for your help

       

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    • Posted

      Sounds like you're on track with the Clobetasol (I'm in Canada and use it, most of the UK women mention Dermovate, which is the same thing) and other good things.

      I can't say I wish a boil on you, but at least it has a resolution. I had to take a course of antibiotics... My theory is that as my inner labia sewed themselves together over my clitoris, the seal was incomplete, allowing junk and bacteria to grow. I had noticed this for some weeks before and thought if I kept squeezing the junk out there would be nothing for the bacteria to live on. (I know, really stupid, I was just avoiding taking my crotch to the doctor here in this little village). Then it suddenly got serious and scary, but I still waited till after it had drained to go in. Geez.

      Of course, we eat chocolate exactly when we're feeling low. In the first six months after diagnosis I ate a LOT of chocolate. I gained weight and the LS was not improving as I'd expected, not the big angry red area around my anus that makes it hard to sit still. Not I get that immediately after eating chocolate or a big sweet dessert.

      "cracked skin + underactive thyroid = LS" is sort of a way of saying it that isn't exactly true – LS = cracked skin and often seems to be paired with thyroid trouble. I don't have thyroid trouble, so it's not caused by thyroid trouble.

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  • Posted

    Margaret 289 I am also from north wales and have recently diagnosed, I go to a vulva clinic, he has given me Dermovate, I would love to find a LS specialist in or around our area a dermatologist or gyn don't mind as long as they have lots of LS knowledge., please let me know if you find one and vis versa. These forums are where I have found out how to treat it as like said most dr give you a few sheets of fact sheets, and a yearly check up. 
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    • Posted

      Hi Roselee, I certainly will keep you informed.  I have not been referred to a vulvar clinic and was not even aware there was this provision around here.
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  • Posted

    Ouch! i sympathise, I had similar sensation when travelling in OZ having put on weight and thinking i had thrush and wearing tight trousers( not many shops in the bush)

    To cool the burning sensation perhaps crushed ice wrapped in a flannel or something - you dont was freezer burns to add to your misery. Have a splash of cool water when possible

    You will have seen a lot of advice on the various threads about keeping urine off the area with barrier creams and keeping the area moist with moisturisers. If you havent been prescribed with something like Diprobase (which is great to wash with too) try something like an aqueous ointment - cheaply purchased from the chemist - a big tub you can wash with it - but do take care the house hold plumbing can get clogged up with so much cream and ointments around - and the surfaces of showers and baths can be very slippery!

    We are trying to compile a leaflet for the medics and the newly  diagnosed - The moderator Alan may be able to help you look at the threads thatcould help you most. Birmingham Hospital started a local LS support group some years ago - i don't know whether it is still functioning though. My gynae suggested buying astroglyde from the net as a non irritating lubricant for penatrative sex If you are inflamed, make sure you have a LOT of cream to help with the elastisity

    My consultant suggested it was a sudden change in hormone levels - either up or down  combined with high levels of stress could cause this auto immune condition. Your Oh So Sweet female consultant needs shooting - of course when the inflamation goes away you can resume your sex life once more.

    Several people are changing their diets. I have a healthy diet I'm not a great sweet lover, tho the occasional choc will pass my lips without much effect- apart from my hips!

    Take care and keep thinking positively - being miserable  and racked with pain is stressful and I am a firm believer in keeping the stress levels to a minimum if possible as the cortisols floating around the body are destructive

    By the way you DO NOT want to have a boil as there will be scar tissue and the steroids are used to avoid scar tissue forming - cos That is very fragile  skin and will break down  more easily

    Good Luck

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    • Posted

      Thank you so much suedm.  Went to see my lovely female Dr and of course woke up with no pain at all! After much discussion I have an appointment at private hospital with vulval skin specialist.  It will cost me £150 but if I can get on top of managing this awful condition it will be money well spent.  I do use aqueous ointment, go knickerless as much as practical and am now being a little more generous with the steroid cream as I my interpretation of 'sparingly' is too spare.  I will try astroglyde and have bought some female condoms.  Anyone else used them.  They're expensive but if they work what the heck, will post when we've tried.  Burning has come back, not so badly thank goodness.  
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    • Posted

      Hi Red Hot, I am sorry not to have responded I have been away from my computer and over 200  threads are here now i have a few spare minutes! How have things settled? Have you had your private apt? Did the female comdom work for you? - i did find my  husband's fluids burned horribly - but I put that down to his chilli eating habits! Did you mamage to see the webinar from Andrew Goldstein of Washington Uni hosp? i took screen shots and printed them up for my gp practice for all the nursing and medical staff to  look at.  And the advice to massage in the Clobetasol for NINETY seconds- it takes an age!

      Hope all is well Sue

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  • Posted

    We are trying to compile a leaflet for the medics and the newly diagnosed - The moderator Alan may be able to help you look at the threads that could help you most.

    The specific discussion mentioned is here https://patient.info/forums/discuss/ls-perhaps-we-could-compile-a-fact-sheet-270123

    The main group page for LS is here https://patient.info/forums/discuss/browse/lichen-sclerosus-1341

    Anyone can post links to other relevant discussions and they will not go for moderation. If any user wants me to post links to other groups, ask questions etc please use the "Report" link, "Other" option to ask as I only came across this comment by chance.

    Regards,

    Alan

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    • Posted

      I have been putting together a questionnaire using the threads I have seen re LS and some of my own experience/ suspicions.  I cannot see unfortunately how I could distribute it to the folk who follow this subject.  I'm currently on holiday, but will be back on the case when I return on 12th August. Any ideas? - I would want to trial it and pass it through you moderators obviously.  Complete anonymity understood.  Currently it is in Word table format, but it could be submitted to survey Monkey so that some useful data can be obtained. 
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    • Posted

      Happy Holidays - well done - If the moderators wants to compile a list of contributors who are willing to participate - I would like to put my name forward for the trial
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