Emuaid

This is a devastating disease. I was angry and depressed and scared after my diagnosis. I could hardly eat cause I was freaking out so badly. Most of the people on here have had a hard time with it at some point. Life's not fair. That's true. But it's also not fair that I have enough to eat every day and live in a comfortable house and there are many people who go to bed with a gnawing empty stomach for lack of food. I'm not meaning to be unsympathetic but sometimes we need a new perspective.

We all need to reach for healing. I reached deeply into my faith and for some good support people in my life. I still sometimes get worried and depressed about my LS but in general, life has gone on.

I've come to see almost everyone in life has some heartache... Something they wish they could change.. Something they shed tears over periodically.

Somebody on here said that there are worse conditions to have and that was good for me to hear. There are much worse conditions.

I'd really encourage you to reach for help. I don't know where you live but in Ontario, Canada, we have mental health support available. Talk to your family doctor and tell him how you are feeling. Or talk to a pastor. You sound like you need a boost of support and need help to sort thru it all.

This is a good place to come for support. This group has been instrumental in my recovery from the blow of diagnosis.

I'm sorry you feel so low. Please get help today.

Yes you are I right this is very difficult to go through, but please think of yourself right now & not whether you will have a boyfriend or not. Take care of you & get the care you need to hopefully improve your LS. I've had LS about 15 years & it's not always easy to deal with especially when I was younger. Please forllow your Dr's orders & take it a day at a time. This is my first comment on this website, but I have read & learned a lot since I joined. There is a lot of caring, compassion & info in all of the comments. God Bless you & please keep us informed on how you are doing. We all care.

Yes...it does get discouraging and you ask yourself why me especially when you have had only one partner for almost 50 years. Before I developed LS, I had never had any female problems what so ever. I think doctors need to get on top of this with patients who hits menapause and try to ward this off if they can. My doctor was very vague about it for about three years...never even mentioned what she thought this was or was developing into, Just said use Estrace.

 

i also have noticed most of you all are from like the U K or Canada.Iam from Washington don't here of this around here.i just want love in my life could care less if i ever have sex.this just gets me down so bad,when it hurts so bad to pee or wipe.they just have to find a cure,they will when i'm dead and gone.ugh!!!!!!i just wish life wasnt based on sex

I am from illinois & have had LS for about 20 years. My Dr. doesn't appear to know much about LS other than the name of the disease. She has me on Clobetasol Ointment which helps but I have a lot of damage done to my genital area & cannot have sex. I would like information on products to use besides soap to bathe with. I use Dove & Oil of Olay which both burn. Someone mentioned emollient creams to clean?? And barrior creams/lotions ?

In the UK we are prescribed Epaderm or Hydramol ointment which are emollients that you can wash or moisturize with. We also bathe with nothing in the bath or 1/3cup baking soda or bicarbonate of soda. This is a neutralizing solution for any acid like urine and helps calm inflammation but be careful as it is also quite strong and should not be used too much. You can also put a pinch in a spray or Perrins bottle to wash with. Again ls doesn't like damp skin so not too often. I 'wash' clean with Epaderm every toilet visit. It helps to keep things calm and moisturiser. It also acts as a barrier to urine and stop's damp skin. Some use baby nappy rash cream like Sudocrem to barrier the area. Hope this helps you.

that clobe burns so bad,i wonder how much it really does help.so really no sex ever again,how is this fare?do you have a man in your life?i don't nor ever will because of this.Not all people that have thyroid problems have this problem,i do beleive this is what may of brought it on,thats what i have herard.i dont know but this is one of the worst things that can happend to a person i feel.i didnt even know it has been around 20 years.do you have a thyroid problem?

Yes it does & thank you so much for your reply. I will definitely look into these products. I see that some of them cannot be shipped to USA & some require a prescription from Dr. but now I know what to look for. 

 

no I don't have a thyroid problem & as I said I wasn't diagnosed with LS for many years but I knew something was wrong with my genitals. My Gynecologist finally did a biopsy due to the white areas on my vulva & told me it wasn't cancer but really didn't diagnose my problem. I was talking with a Dr that works for our facility about my problem & she said that I had LS & referred me to a different Gyno who put me on Clobetasol which clears up the inflammation & itching but I have lost the outer labia & my skin is still receding. I am married but can no longer have sex as it is too painful. I think there need to be more research regarding this disease because many Dr's. Aren't aware & don't know how to care  for their patients. 

So i have to face itsex is done.you know i really dont care that much about sex is just men do.your so lucky you already have a n.but if i did have a man and he knows about this he4 would just cheat,i know so.thats the f men i atract.i think fe is about over.what i cant haave love in this life?i uess not.i am angry and hurt.i dont get whre this stupid thing came from

It is a homeopathic/ natural remedy. You can research it online if you google EMUAID.

does emuaid help you be able to have sex,or just calm it down or what does it do?i'm thinking maybe i will try it,that clob just burns.this all just confuses me so much.ugh!!!!!

In our attempt to find healing and restoration of our skin, we apply different creams/ oils/ steroid.. Many of us address it with dietary changes, supplements etc. Emuaid is just another thing I have tried that has eased my itch. It's not a magical potion that fixes all my problems down there. I am able to have sex with some special care with my clitoris when having problems there. I think I have had LS since a teenager(anal for years) and am now 45. Have had it in front for many years now also. I wouldn't want to build your hopes that if you use Emuaid you will be able to have sex. I would hope it would help you find some relief and healing though. But we all respond differently. You certainly could give it a try.

Hi Lori, sorry to hear you are bad again. Last time you posted on here, four months ago, many people offered you support and advice, I remember because I was new too and trying to take it all in too....  It was horrendous.

I followed ALL of the advice and suggestions, not all at once obviously, but a bit here and a bit there and finally worked a out regime for ME.  It took months and months.

Did you take it in then? Perhaps you were too frightened and depressed. I don't think there's a woman here who hasn't felt as you do, in the beginning.

Whats been happening with you in the last four months since you last posted? Did you think about counselling? It helps, believe me! I am in New Zealand and it's harder to get specialist care here. Luckily mental health care is part of out health systems here.

Let's know what you HAVE tried Lori.

You do know there are other less potent steroid creams, which may be better for you. Clob does not suit everyone. 

I know it's easy to say, but lots of women don't have a man in their life. Getting on top of the symptoms with this disease is more important right now, do you think? When you feel more accepting and stop saying why me and poor me, ( and we all said it!) nthen you can think about the next step?

Hopefully, love in the later years of our lives doesn't always need to feature loads of full on sex. Companionship and lots of cuddles are all some men want too! Believe it or not.

hope you read all these replies Lori, while taking a deep breath and really taking them in. All are on your side.

Take care