JUST FOUND OUT GOT LS!

[nh_user_33562]

Hi Everybody,

Just joined today and in need of a sanity check.

I have recently experienced lots of pain during sex and also bleeding. My skin has been splitting and sore so decided to go to GU Med the other day, saw a lovely consultant who diagnosed LS. Sent me home with steroid cream, leaflet and emolient to wash and go back on 4 weeks. I have noticed considerable shrinkage of my labia minora and frightened to death that everything will disappear!

She said had I come in 6 months it could have been so much worse. I am also taking oral chemotherapy for a kind of blood cancer. been on the medication now for 12 years. Feel a double whammy thrown at me now and really rocked me. My partner said to me ' ah well at least its not life threatening' !! I have now fallen out with him after 5 years and he has not even been over to see me this week! So not impressed with his support or lack of.

I hope to get a response please

Denise

[nh_user_18188]

Hi Denise,i know how you feel i have had ls for five years and its bloody horrible as you know,iam the same whilst having sex,i have just received emu oil which iam going to try i will keep ya updated,i will try anything to feel better,mine started whist going through the change as if us women dont go through enough,i do believe its a auto imune thing,my husband of thirty years understands,any partner should accept whats happening to the person they care about but i know its not easy,keep intouch.Pammy x

[nh_user_18188]

Wonder if he would feel the same if it was him with LS.

[nh_user_33562]

Hi Pammy

Thank you for your reply! So sorry you are still suffering.

I go back next we'd to see consultant. I am sure its gone even whiter in certain areas. My partner has walked away from me after 5 years and not heard a thing since I told him. I am in shock and deeply hurt. I am scared its going to get worse. Has yours?

Thanks for taking the time to reply

Denise x

[nh_user_18188]

Hi Denise,oh sweetheart iam so sorry to hear about ya partner its tragic love,the consultant should be able to help you sort out whats right for you,creams ect,you just have to keep positive i know its hard,i have bad flare ups and sometimes its unbearable.dont let your partners non support get ya down love,you can come on here anytime and i will always reply to you when ya need to talk.Pammy x

[nh_user_33562]

Hi Pammy

Thanks for your kind words! He is a spineless snake and my family are so upset what hes done to me. Just feeel sick and angry. I am not lowering myself to contact him. Trying to remain positive but feel no one will ever be interested in me with an abnormal labia that is painful to have sex.

D x

[nh_user_18188]

Denise,iam not surprised ya family think that about him the tosser,tell the consultant how ya feel and dont be silly you will meet someone who will understand and your doctor will help you through this,i know its not easy but you will get there,and no dont contact the snake either,let me know what the consultant says and ya doctor.Pammy x keep ya chin up xx

[nh_user_18188]

us women stick together,GIRLS RULE XX

[nh_user_33562]

Ahh thanks Pammy that made me smile. I will let you know and nice to chat with someone in same situation as me.

Take care for now

D xx

[nh_user_34693]

Hi Denise, I hope things are getting better for you, I have posted today & I'm still awaiting my results, but my GP is pretty certain I'm too an LS sufferer. I know it's no consolation, but I think you're better off without your partner if that's his response. My GP has prescribed me Canesten HC cream & today is my 1st "itch free" day I actually feel a bit more like my ol' self for a change. I'm sure it won't last too long tho'. Keep us all posted on your progress, where I'm a NEWBIE to this too, I also can use all the help & advice I can get to help improve my symptons.

[nh_user_33562]

Hi Tracey

Thanks for your reply! So sorry that you think you have this disease. Been diagnosed now 3 weeks and paranoid that getting worse, certainly more white patches. I shall let you know how I get on next week.

Hope you're not too down.

D x

[nh_user_18188]

I agree dont give him a second thought xxpammy

[nh_user_34693]

Hi Denise,

It's the waiting that's the worst isn't it...too see what can be done to help us. Yeh my symptoms even "floored" my GP, she was so shocked how bad it is, as soon as she saw it she knew straight away but obviously you've got to go through the proper channels so to speak. If only they could actually pinpoint what actually caused it in the 1st place. I know there is no cure & I can accept that (begrudgingly) but i'm just so perplexed by it all. Admittedly I haven't had the healthiest of lifestyles due to my previous occupation for the last 20 years, but i'm not overweight, relatively fit. It just makes you wonder if you've done something wrong to cause this in the 1st place.

So many questions, & so few answers is what I find the most frustrating. Keep in touch & GOOD LUCK for next week xxx

[nh_user_33562]

Hi Tracey

Yes the consultant diagnosed LS in less than 10

seconds! She's not tested me at all just given me

Steroid cream and a leaflet! Came out walking

Like a zombie . I am not sure if my chemo has

Contributed to having the disease as it plays

Havoc with my immune system . My haematologist

Says not but not convinced, likewise let me know

How you get on, nice to know not on your own,

D x x

[nh_user_34693]

Denise, Don't get me wrong, I can't knock the NHS we are so lucky to have it...but....They all stick together & back each other up don't they. So you start to doubt yourself & wonder whose fooling who. We know our own bodies better than anyone...I lived with mine for 46 years now (hahaha) & with all the different Doctor's I've seen over the last 3 years, I've had so many different diagnosis from Piles to Thrush to trapped wind...WTH, I knew it was more serious all along. I've just been so fortunate That the GP at my surgery is relatively new & I've been able to book appointments to see her rather than given a slot to see any GP, which sadly happens at most practices. She had to try the usual stuff before she found & got to the "nitty gritty" as it were. xx

[nh_user_33562]

Hiya

Sorry it's taken soooooo long! For you, yes we

Know our own bodies and what is normal and

What's not . The consultant said to me it's a Good

Job I didn't go to the gp is she said they would

Have just said it was thrush ! Can you believe

That???? I am scared going to close up completely

As read some really scary cases!

DX

[nh_user_33562]

Hiya

Sorry it's taken soooooo long! For you, yes we

Know our own bodies and what is normal and

What's not . The consultant said to me it's a Good

Job I didn't go to the gp is she said they would

Have just said it was thrush ! Can you believe

That???? I am scared going to close up completely

As read some really scary cases!

DX

[nh_user_18188]

Hi no one knows for sure what causes LS but i really am convinced its autoimmune it seems nearly everyone i have spoken to have another autoimmune thing wrong with them,its about time more research should be done.Pammy xx

[nh_user_33562]

Hiya

Really??? Well it seems strange how my white

Blood cell count is sometimes low and open to

Infections. I regularly get mouth ulcers and sometimes

Anaemia. I think like you say LS could be linked.

Just another disease for me to worry about (

D x x

[nh_user_34693]

Morning Girls, My GP has said nothing about Auto Immune problems at the moment, But from reading lots of other post's that's how it's sounding. Well yesterday (day 1) was totally itch free....until bed-time, so we'll wait & see what day 2 (today) brings !! Oh the element of surprise It seems odd that I started the "change" about the same time this all started, so it leaves me very confused what has caused it. Feeling abit more positive at the moment