JUST FOUND OUT GOT LS!

Hello,

Yep not from UK to answer question before... I live in US. I talked to my mom about my problem today, had not ever told her before. She suffered from undiagnosed LS for years... She gave me little dissolvable capsules that she filled with boric acid powder and put inside her 2 times a day.. She said she has been symptom free for years. She also used steroid cream to. I am trying it! I will try anything... I'm pretty sure she had this to and after doing resurch it says it can be hereditary.... I will let u girls know how it goes... I am praying I have to have a long day at baseball fields tomorrow with my son and the heat always makes it way worse. Have a great symptom free day girls!

Jenna

Aww bless ya mom,hope ya day went ok xx

Good morning ladies hope you all had a good weekend,well i have to say the emu oil is working a treat never felt like this since i started with LS its the best thing i have bought,hope you got yours and its working for you x Pammy

Morning Girls, Hope you all had a great weekend ??? Wahoo...I had a fab weekend, still didn't receive my Emu oil yet, But used my Canestan HC in heavy thick amounts, & had my 1st totally "Itch free" weekend in what seems like forever . Went out for a day's shopping with my partner on Saturday & had a quiet day in the garden yesterday.....& I actually feel normal again, felt so good I even indulged in a very large glass of wine with lunch , managed to fall asleep & got sunburnt hahahaha.

Jenna, I'm so glad you're managing to try something, let's keep fingers crossed it works let us know how you get on. I haven't talked to anyone except my partner, I feel quite embarrassed by it, my mum & sister can be quite "prude-ish" about things, so I find it easier to talk to my partner instead...besides, Mum's getting on a bit now & I don't want to worry her anymore than I need too.

Pammy...I can see you dancing round the kitchen right now hahaha

with total joy & relief, I'm hoping my get's delivered today .

Hi Denise, yep mine's feeling tight on my left side also just praying "postie" get's a "wiggle on"

Let's keep fingers crossed we all have a "Itch free" week T xxx

Hello,

Felling like I'm getting a little bette using the capsules of boric acid... But on crazy fire today! Started my period today and can blearily pee it hurts so bad :-( would love To have sex with my husband again sometime soon! :-(

How is emu oil helping?

Jenna lee

Good Morning Jenna,

Glad your starting to feel a little better I can really sympathise with you...I had my period last week & so relieved it's done for this month. The burning is just so awful some day's I just wanted to sit & cry & do nothing. It's obviously worse for you being a young Mum because you are always busy being a good parent. I don't know if we can buy boric acid capsules here ?? We have to visit our Doctor's for everything & have to get prescriptions all the time, It becomes so expensive.

My Emu oil still didn't arrive through the mail but i'm led to believe it helps to cool, soothe & prevent the itching, I haven't tried it myself but Pammy seems to be having success. I have read other posts on this site & international one's also, & from what other ladies have posted it seems to be a bit of a god send to all that have tried it . But I can't actually give you my personal opinion yet, but as soon as it arrives & I've tried it I will let you know. I believe it helps to keep the skin supple too. But please don't take my word for it, this is information I've had read about from other post's. I'm prepared to try anything really.

It would certainly be worth you trying to look it up, it's quite expensive here, but a little goes a long long way, & I think the cost seems to fade into the back ground if it works, apparently you have to keep it refrigerated also. My Doctor has prescribed me with Canestan HC at the moment, which is controlling the "Itching" thank goodness, but I have to go back to her next week & i'm sure she will prescribe a stronger steriod cream. I'm also going to ask if they can do some blood works for thyroid problems, which can lead to Autoimmune problems, which is technically what we all have I hope this helps a bit more. Good luck, message us again when you have time & let us know how you are doing T xxx

Hi again Jenna,

forgot to mention 100% pure tea tree oil is another product that is advised to try, again....I haven't tried it myself but have ordered some, so hopefully that should arrive soon too . But the tea tree MUST be 100% pure apparently, it's what I've read on the LS (U.K) website today, T xx

Good afternoon ladies hope you are all ok,still on the emu cant believe how good it is hope you have all got yours now,please let us all know how it goes.back soon. Pammy xx

Hi Pammy , hope your having another good day, Well my tea-tree oil arrived but my Emu got lost in the mail so I've been onto the company who I've ordered it with & they are going to send me another one so i'm praying it arrives a.s.a.p. Have had a fairly good week in all, the odd "itch" but have resisted having a scratch & "slapped" loads more cream on, going to try the tea tree oil tonight to see if that helps heal the sores & tears So will keep you up to date with that.

So I guess that all is well with you?? you must keep us updated how you are getting on, really well I hope T xx

Hi ladies hope you are all feeling well,still on the emu feels great,been in the lakes all week so feeling relaxed,hope ya all got ya emu now,let us all know how ya get on,off in the garden now catch ya all later pammy x

Hi Pammy,

It's Tracey...I changed my user name. Yeh finally got my Emu oil last week . Had to see my Doctor again last night & she's now put me onto Dermovate & she is making me a priority appt' with the Vulvar clinic. I've been loving this weather just wish it could last forever !!.

I had a dreadful night with the Dermovate (1st night) not sure if I used too much, I kept waking up feeling all "slimy" & greasy . So couldn't wait to get up & take a shower this morning, so I re-applied a little amount again this morning & feeling a tad more human now.

My Doctor told me I only have to apply it once a day (before I go to bed) but i'm sure they will update me with it all when I go to the clinic.

Have tried the Emu oil just the once & it did feel good, I've been using Tea tree oil for the tears & that has made a massive difference, they have all healed so I feel better in myself for that.

The heat hasn't affected me like I thought it would, so that's a major relief, I couldn't imagine what on earth it would be like suffering with LS & the heat .

So just a matter of waiting to get the appt' thru' now.

Do you think I did possibly use to much of the cream Pammy last night, I guess it's trial & error until you get used to it. Enjoy the garden Pammy have a cuppa for me while you're out there hahaha,

Talk again soon, take care T xx

Hi everyone,

I'm 27 and I was diagnosed with LS 2 years ago after being told for months that I had 'severe thrush'. Apparently my case is fairly mild but it interferes a lot with my love life! Luckily I have a really supportive boyfriend, but it's really frustrating, and painful.

So far I've tried Emu Oil which helps moisturise - and is good as a lubricant - as well as YES lubricant (I haven't tried this yet though but I'll keep you posted!).

I'm trying a low oxalates diet right now as a lot of people have said this can cause flare ups. I read that oxalates COULD be a cause of LS too, so I'm looking firward to seeing if this change of diet makes the symptoms decrease.

It's nice to find a place to chat about this!

Love x

Hi Everyone,

I am so pleased to have found this site. I was diagnosed with LS by a 12year old GP 2 1/2 weeks ago. When I say diagnosed she said she thought it was some thing called Lichen Sclerosis and the treatment would be really strong steroids so she wanted to check with a senior partner first. Senior partner obviously agreed (without seeing me) because later the same day I got a phone call telling me I could collect my prescription. that is the sum total of my LS knowledge!

My husband was home for 10days from working abroad for 6months when I got my diagnosis and has now returned to the middle east (without having had his wicked way), I have 3 grown up sons whom I am not able to talk to about this. I find my mind is just full of the enormity of it.

I try to think positive thoughts but it is oh so hard. I hear you all talk about the itch......I wish, I am in agony! I have been applying the dermovate as directed but it doesn't seem to be making any difference.

I have made an appointment to go and see a senior partner on Monday and am hoping for more help, although i'm not quite sure what they can do. I have bought Emu oil and zinc sulphate and just dont know what to do for the best.

I confess to just wanting to sit and cry.

Thank you so much for being out there and sharing your experiences it has given me some hope for the future

Caz

Good luck to you... It's a rough road... I've been dealing with this for years and it's hard...some times you wanna just scream! I am swearing captsuls of boric acid... This has been a life saver along with hydrocortisone cream. Also I take a Benadryl every night that helps subside the itch to be able to sleep... Good luck to you!

Jennalee0204

Hi Caz & Girls,

We all know exactly how your feeling Caz, I was diagnosed back in May, I'm pleased to say that the Dermovate has been a massive help for me, if you find things aren't improving it may be worth a trip back to your GP, it could be that the cream isn't best suited to you, there are quite a few ladies here that some things don't work for them, so it may be worth trying something else, sadly you may have to persevere for a week or so to see if it does "kick in" so to speak.

The itching I had was horrific, because I didn't realise the more you scratch the worse it get's, I was scratching all the time, obviously making it more irritated, The GP I saw originally was really helpful, she gave me a fact sheet with some basic do's & don'ts & then wrote to make an appointment at the vulva clinic. I went back to see a 2nd GP, who I have to say was of no help what so ever, she made me feel like I wasting NHS time & money, I wouldn't mind but i'm sure like most of us here...we pay her wages!! I came away absolutely seething, I was just so cross, she totally dis-missed me & my concerns & I think because I was so "wound up" it irritated things even more, so for day's after I was so uncomfortable.

Looking back as we all do, I really think she had never actually come across LS before, she didn't even want to have a look, again...my thinking...because it's quite (allegedly) rare, she probably thought she wouldn't come across it again so wasn't too concerned.

I've got my appt' for the vulva clinic at the end of Sept' & will be glad when it's over. Everything that I have learned & am learning about LS, is from this site, the girl's here are just fantastic & so supportive, if it hadn't been for this site I would still be totally unaware of what to do, try & how to cope, try to read up as much as you can, don't be afraid to try different potions & lotions, but if you do..try to make them as pure & natural as you can.

We are all here to help with tip's, advice, & share our experiences, I don't have much experience, as i'm a "newbie" myself, but the girls here have helped me with what to try & some of the products have been a total blessing for me, I feel like I'm coping a little better each week,...apart when I get my "girlie week"...Grrrr, that's when I know I have got LS & could happily sell my house & buy a fire engine instead . I'm trying a healthier diet, & my latest thing is....100% raw & organic coconut oil to eat & cook with, I eat a teaspoon everyday, & haven't used any Dermovate for a week now, it was something I read about to try, so figured nothing ventured nothing gained. Also because it's natural & pure, you could probably use a little on the "under carriage" as a moisturiser maybe, I haven't tried it myself yet, but i'm very tempted so if I get the urge over the weekend, i'll let you all know how it goes.

Luckily I've had a "quiet" with LS this week, but I have a busy weekend ahead, so not doubt i'm sure it will "fire up" like a raging inferno by Monday, talk again soon best wishes T xx