NEW AND NEEDING ADVICE, LS OR DERMATITIS?

I don't have itching with LS, but I do have redness and burning and I've got it from front to back.......all the way back 😁. I'm fortunate to still be able to have sex with my husband and enjoy it, but I think that's because I got it diagnosed early before a lot of the damage was done. There is burning after sex from the fluids just like with urine but that's just part of this disease.

I was diagnosed a couple of months ago and am currently using Clobatesol which has really helped the vulva area, but the perineum and rectal area have not improved at all. Like you, Diana, I always would wear a panty liner of some kind for the urine leakage and I thought that was what the LS was.....just a rash from the pads. My gyne has never biopsied me either but he said he didn't feel it was necessary since it was a painful procedure and recovery

Thank you for the info on the pads Louise, I always have a flare up of LS following my period, I did realise the pads were to blame but didn't know why, it now becomes clear. I will also be searching out the cotton pads which I did not know existed, although I had hoped at 52 my period would now have stopped! It seems not, they just keep arriving

Hi everyone,

Like you louise i have a red vagina opening and strangely enough the most itchy part for me is on my upper lips basically around my clit has been like this ever since i was given the 1% ointment which is the lowest the doctor said so im guessing this is not working for me nad i need something stronger.

i actually was treated for urine infections cystitus which after the third time i actually asked to be looked at as i had noticed a white spot but was ages gao and thought nothing off it untill they looked and said it could be ls and explained how it starts.

ive got an appointment in may so hoping they give me something that works. !

Hi Louise,

I only itched externally with my LS. From what I can gather and from my personal experience the redness is a common problem with LS. LS does not affect your internal parts apparently. There is also a similar problem called Lichen Planus. You might want to check the symtoms for that. It is the white patches that you have to worry more about. That is the LS being active. My clobatesol proprionate is 0.05% w/w ointment which I think is much lower than the 1% you use (I'm not a pharmacist so check this out). I have been told I can use it often with no skin thinning. Sometimes I think it is not stronger you need just the right product for you.

By the way LS can affect your skin in general and if you start getting white patches anywhere else they could be connected. I have vetiligo on my arms which the dermatologist says is likely connected as many LS suffers have it and it is also an auto immune disease. I also have small white marks appearing around my lips. These are tiny and not really noticeable at the mo but I am keeping an eye on them. So is the dermatologist. Report anything that changes or itches on your body.

Hi everyone,

Just ordered the natracare pads on line from Amazon. I read a worrying review about them being like cardboard so I am hoping that that is incorrect. I decided to order one pack to give them a try. They are a bit pricey. I will see if they are cheaper the next time I am near Waitrose. Will let you know what I think next week. I took the longer delivery option to avoid p&p charges.

the whole time ive had this the white patches have been there.! so im guessing nothing im using is working. x

Hi Amy,

Go back to your GP if you are worried. You can be seen at any time and do not have to wait for your appointment in May which I take is with a specialist, although you will get a lot of your information then. Try to go armed with questions you want answers to. If you look at the NHS info on Lichen sclerosis you may find answers to your questions. Remember treat as you are told to and keep it well moisturised. Keep the area free from urine, clean and use plenty of Moisturiser.

Louise,

I feel that I could have written your post. Our symptoms are so, so similar. I thought I was alone in having felt my symptoms. I have my biopsy scheduled for Thursday. I really, really am fearful that it is LS.

KK1234 , did you have antibiotics too?, tell me your story so far xxx

Louise x

Hey Louise!

My symptoms started 1.5 years ago. No discharge at all, redness around outside of vagina and inside of labia minora, no white patches but red welts, terrible itching. Initially saw an OBGYN who told me that it was a yeast infection (even without discharge and my pelvics were negative for yeast) and so I was pretty much continually using yeast infection creams every other week for about 6 months. I would improve for about a week, then same problem would come back. I felt like such a pest to the staff at the OBGYN office. Finally I had a full on mental meltdown about it (just cried all the time because I hurt so bad) and made an appt with my regular primary doctor. He told me that it wasn't yeast but Bacterial Vaginosis (even though my BV tests were negative and I had no foul smelling discharge) and I spent about 9 months taking antibiotics (Flagyl orally and vaginally). Finally, the primary doctor said he didn't want to give me more antibiotics and tried to send me to the same OBGYN who told me it was yeast. I put my foot down and said I wanted a new OBGYN referral. Saw the new doctor about a month ago who took one look and said "it is either contact dermatitis or a lichen disorder." He didn't want to do a biopsy right away because he said it is fairly painful even with local anesthesia, so he gave me clobetasol ointment that I used 2x a day for 2 weeks. I was so so happy because my symptoms resolved. I stopped using the clobetasol and about 1 week later, same problem is back. Emailed the new OBGYN and he is doing the vulvar biopsy tomorrow. I am terrified that it is LS.

If it does turn out to be LS, I will be making an appt with Dr. Newman in Los Angeles (where I live) and am going to try the stem cell treatment. Will be very pricey because it is still considered experimental medicine, but I would give anything to make this go away!!!!

Let us know how you get on kk. It is horrible to feel alone. We will all be here for you.

Kk1234, well that all sounds awful, it's such an awful feeling physically and mentally, if yours is contact dermatitis I'm guessing your doing the same as me, cotton pants, no sanitary towels, no soap or bubble bath, non bio was hing powder and trying to wear no pants to bed. I have been using betnovate for 2 weeks and they have just given me the weaker betnovate for another 2 weeks, when you stopped your cream did you just stop or wean off it? Xxx

hi Chrissy,

i have been back to the doctors and have been given dermovate ointment which hopefully will help. yea i do try my best with keeping it moisturised and clear off urine too.

i am also having blood tests done as i feel i may be lacking in iorn which i know that auto immune probs can lead to ls thats if i have ls. i guess i will have to wait and see what happens in may.

Louise

Yep, I've been doing the same as you. Only cotton pants/nightgowns with no panties, tampons (unscented), actually no underpants at all because even cotton ones seem to flare it up. Recently changed to "Free and Clear" detergent without fabric softener, switched soaps and now only use Cetaphil (even on my hands) and I bought a cold water bidet on amazon to squirt water at my privates after urination. I feel like my vagina is running my life lol. When I stopped the cream I didn't wean off of it, which have I since learned I should have done… Fingers crossed for my biopsy today.. Not looking forward to having to go work a 12 hour shift (nurse) afterwards!!! I'm so glad I'm not alone. Thanks for starting this thread!! Kirsten