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'.
0 likes, 18 replies
margaret289 Redhotpins
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Redhotpins margaret289
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thank you for replying, I do appreciate it
margaret289 Redhotpins
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Redhotpins margaret289
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Morrell1951 Redhotpins
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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.
Redhotpins Morrell1951
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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
Redhotpins Morrell1951
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Morrell1951 Redhotpins
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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.
Roselee Redhotpins
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margaret289 Roselee
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suedm Redhotpins
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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
Redhotpins suedm
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suedm Redhotpins
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Hope all is well Sue
Emis_Moderator Redhotpins
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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
margaret289 Emis_Moderator
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suedm margaret289
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Morrell1951 suedm
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