I don't have itching with my LS, just very red and raw painful areas. Is this normal? Everything I read on the internet talks of the horrid itching

I was diagnosed with LS a couple of years ago. I had actually gone to the doctor about a small red spot just inside my vagina and was told it was nothing to worry about but a couple of days later it bled a LOT - it was what I think is called a cherry angioma, a collection of blood vessels near the surface. Anyway, while having the look the doctor noticed I was rather red around my nether regions and suggested that I might have LS. I saw a gynae consultant, had a biopsy done and even after that the diagnosis I was told was that it MIGHT be LS. I was tried on a couple of different creams and one made it much worse. I found that Sudacrem was much better.

I have only ever had a little bit of itching at various times, nothing like people have described and most of the time I have no trouble with itching or soreness at all. It's only if I have a look that I even see that it's a bit red. It used to get red raw at one time but I don't get it like that much now. I did wonder if it might be to do with my diabetes and if my blood sugars are a bit high it might give me a flare up but I haven't actually really taken a lot of notice.

Did the doctor mention LS and vaginal fusion?I don't know how long I had had LS but I do know that I have some fusion and now only have outer lips, the inner lips having fused to the outer ones so I suppose I must have had it for years without realising. Some people have fusion so bad that they have to have operations but I am not that bad and hope I don't get that bad. As someone with LS has a higher chance of cancer of the vulva you are supposed to get yourself checked out once a year.If you don't know about fusion I should look it up and at least you can keep a look out for it happening I don't know if you can stop the fusion but if you regularly take a look that might help. I didn't realise and I don't suppose other women do either that you can get fusion with LS, I just thought it was a bit of a skin complaint. I expect most women get a bit of itchiness or soreness from time to time and don't know they've got it, I certainly didn't know There needs to be more information about LS. Ladies need to take a regular look at their bits, perhaps we should start a campaign! I hope this helps.

Hi Kiki,

I would definitely recommend that you see a dermatologist. If I hadn't taken the initiative to do this myself,I would still be groping in the dark, with no idea what was wrong with me. I was put on betamethasone to begin with and, although it helped I was persuaded to use dermovate, which so many people on this website seem to use. It is very effective against the chronic itching so I changed over to this. Good luck and let us know how you get on!

Hi ya, my daughter has been diagnosed with LS without a biopsy, it was just very obvious. She never complained of itchiness just pain and sometimes a stabbing pain in her vulva and anus. I think she does have some fusion, I wonder if there are different types of LS? We use dermovate and it has taken 3 weeks to start working but I am also using calendula nappy cream on her anus and that has helped with the redness. From what I have read I have been telling her to put her Dermol 500 cream on as often as possible to keep the area moist. I have huge sympathy for all suffers as it is a relentless skin condition, Jo

i am going to see a dermotoligist in May, i use the dermol cream aswell as using cortorpin hydrcortsone ointment. the whole vagina area is red and sometimes sore only if i rub or itch that area particually. the most itchy/sore part it just above my clit thats the most annoyin bit for me.

i do check regularly and so far i dnt think ive had any fusion problems. i kind off always feel like i am leaking aswell so im not sure if thats due to something else but is annoyin.

Kiki, itching has not been my main symptom, more like the 'blowtorched effect' – a red burning rash, then split skin in the white area of my perineum. I've had LS all my 62 years (beginning with what my mother thought was bad diaper rash), but not diagnosed till last summer by a great young gynae. I wish even one of the dermatologists I went to over the years for psoriasis had wondered whether I had LS. As a teen and periodically all my life I got huge cysts or what seemed to be boils – long ones – along my panty line in my groin.

Fusion and the risk of squamous cell carcinoma are the two main reasons to use Dermovate (Clobetasol in North America). I feel I can't afford to experiment with anything but oily moisturizers in addition to the steroid ointment. As I understand it, the better job we do reducing the severity of the flare-ups, the less scarring and fusion and the lower risk of cancer.

Using a mirror is key to stay in touch with what's going on. I experienced total fusion over my clitoris before I realized what was happening. I used to suds up like mad every night, scrubbing away. Totally counter-productive. We should use zero soap down there, so our 'good bacteria' can do their job.

oh right so you were born with it then? never thought you could be born with it thought it would be something that forms beacuse the immune system is not working properly.

talking about boils i get one ortwo occasionally come yp on my inner thigh on my buttox if that makes any sense they dnt seem to bother me really.

im just always moist dwn there.

Hi Kiki55

In reply to you question about the itching, I have been told I have LS from my gynecologist but have never had any itching. Last week I got a second opinion from a dermatologist who also thought I had LS. with some vaginal narrowing and some scaring. I also have minor problems with psoriasis.

The dermatologist prescribed Diprosone ointment (i am in Australia) twice daily for 1 month then once daily for a month then 3 times a week for a month before seeing her again. I mentioned that I was not keen on using steroid treatments and her reply was that the malignancy risk arises from inflammation in that area and that the safest option with most evidence by leading vulval dermatological experts, is the use of steroid creams to prevent this inflammation from occurring. She went on to say that steroid creams used on mucosal surfaces are very unlikely to cause trouble, including thinning.

She further added that some non steroid creams can actually exacerbate the problem as they may contain irritating and sensitizing agents. She suggested the use of Q.V. ointment or Vaseline as safe moisturizers to use in between times.

Best of luck, hope this information is of some use to you or others.

Hi Gaye,

I was heartened to hear your comments on steroid creams not being likely to cause thinning of the skin. I wouldn't stop using them anyway, as I would be driven up the wall with the itching.

Amy, I've read posts by a few moms of baby girls with LS. Most of them will stop having symptoms after puberty, but some (like me) will have it all their lives. Some get it as teens and most get it after menopause. 'Auto-immune' is an umbrella for so many chronic conditions and research is just starting, so there are no hard and fast rules.

Just a shot in the dark here but since ive had my son nearly 10 years ago ive had contraception that basically stops my periods i know it sounds odd could my body think im in the menopause?

i wasn;t sure about vaseline as it said it contained alcohol which can cause problems but i do need to use something inbetween times. Perhaps il give that a go.

Hi Amy,

Use a good emollient like Epaderm to wash with and for moisturising. It is lovely and creamy so soothing. The key is to keep everything moisturised and to prevent itching which damages the area. Treat with Clobetasol as recommended by your GP. I scratched so much in the beginningthat I have so much damage caused down there until I found the trick to not letting the LS get active. I never itch now. Good luck

Hi Chrissy,

My doctor has not perscribe me clobetasol ive got a hydracortisone ointment 1% that they have given me and dermol cream for washig etc. epaderm where can i get this im in the uk? yeah i do scratch sometimes but not loads.

Hi Amy,

I'm in the uk too, my GP prescribed it for me, a great big tub. Use the 1% for now but ask the GP for the lesser strength one for keeping it under control. Maybe there is a reason why you are on stronger cream. The dermol might be the same stuff. Ask your pharmacist.

Doctors believe I was also born with it, diagnosed at age 7 and now 21. Was also told that young girls can get it at a very young age but most often outgrow it during puberty. I like morrell was not one of them my mum thought it was nappy rash too but then started taking me to the doctor when I was 2 but they refused to look at me and told my mum she wasn't washing me properly!. Took them give years to even agree to just look and when they did, my LS was so bad I didn't even need a biopsy to confirm it, some of the skin had started fusing together! Was put straight onto dermovate. I have also noticed more "flare ups" when I've had a higher intake on sugar, not diabetic but have been told it's extremely likely I could be at some point in the future as 3 out of 4 grandparents have diabetes. Also it's been known to doctors that people many people with LS also have diabetes. I experience pain stinging and itchyness, and. The skin tends to go white, so guess it sounds right to say that not every woman will experience the exact same symptoms. My vulval dermatologist has been amazing and seen me at every appointment, definitely push to be seen and get a full diagnosis and some treatment!

hi everyone i have just read a very interesting article about urine incontinance here it is,

The traditional use for a barrier cream is to provide a barrier between the skin and the outside environment. Barrier creams are often used by people who work with caustic chemicals or other hazards that would damage their skin. A more common use for barrier ointments is for people that suffer from urinary incontinence.

Urine is an irritating substance, and the skin in that region is very sensitive. It is common for people who suffer from urinary incontinence to experience irritation and even infections where their skin is exposed to urine.

Using a barrier cream is an effective way to keep the skin from becoming irritated. There are a variety of widely available barrier creams. The type that you choose for your skin will depend on your budget as well as the degree of irritation you are experiencing.

If your skin is in good condition, but you want to make sure it stays that way, a barrier cream alternative, such as Vaseline® or other petroleum jelly may be all that you need to keep your skin in shape. If you are already experiencing irritation, you may need something stronger. An over the counter barrier cream, like the type that parents use on their children’s diaper rash, is an effective and affordable choice.

If the irritation is more severe, or it appears that you have developed a skin condition in the area, it may be necessary to use an antibacterial or antifungal cream to treat the area. You may want to add a protective layer of petroleum jelly over the top of the antifungal or antibacterial cream. Neither of these are a traditional barrier cream, so they will not provide a sufficient level of protection from moisture. They will only treat the existing condition.

Through the vigilant use of barrier creams, it is possible to prevent many of the skin conditions that develop as a side effect of urinary incontinence. It is important to realize, however, that complications may still occur. If you develop a skin condition that does not respond quickly to treatment, see a physician. The skin is a marvelous organ that can quickly heal itself. If it does not do so after you begin applying a barrier cream, it is possible that you have developed a serious complication.

hope this helps some off you x