Query diagnosis.

Don't wash the area with regular soap. Use whatever your doctor recommended. Don't wear anything tight fitting. Cotton underwear only. A lot of women say avoiding sugar helps them. I don't eat much so I can't say. Some are helped by avoiding gluten. Avoid stress as much as possible. It makes any illness worse.

You should get your thyroid checked. Many women with LS also have thyroid issues. Probably your hormone levels as well.

I take around ten supplements a day in an attempt to support my immune system, but I have no idea if it's doing a thing other than making me poorer. Some women claim it makes a difference. You find that we all seem to experience this disease differently.

You should respond to the steroid fairly quickly.

sorry to hear this have you had a biopsy? thats the only way to really find out ,if you have this ,

if you do have it , it helps for me to calm it down by useing caster oil emu oil and a few drops off lavender i make my own mix in a plastic tub you can get this all from amazon and the pump tubs to put it in leave by your toilet and bed i first spray with a borax mix with water i put about a tspoon in off borax its a white powder you also will find it at amazon , spray after every toilet visit , then pat dry dont rub as you can rip the area always pat dry as the skin becomes thin , then aplie the oil mix,

this has been amazeing for me and stops the dryness and takes away the soreness i have now very little flare ups , when i stop doing this routine though bam ! its back so i do this even when im ok to prevent it , also use this oil to lubricate before sex , i cant use the shop lubs they flare me up so use mine

hope this helps you as much as it has me

Sorry to hear this.My GP said the treatment will take about a month to start to work.What creams have you been given?

So sorry you have been suffering, but do take heart that you will find a way to manage this that suits you. I have never had a biopsy so dont agree it is the only way to find out if it is LS. So many biopsy results come back inconclusive it seems. I was diagnosed by a gynaecologist on examination after itching/buzzing symptoms and some fusing 6 years ago after having had a 'loop' procedure on my cervix. . I now see a dermatologist every 6 months.

The steroid cream is a must esp to get it under control to start with and lots of moisturising with carefully chosen products - emollients, ointments and oils. Emuaid is my favoured ointment but I vary it as I found my skin got used to it when that was all I was using at the beginning. Cetraben, coconut oil, castor oil mixed with turmeric are all in my armoury too plus zeroderm to wash with and borax solution for swabbing and soaking occasionally. I think it is essential to never let the skin dry out. I also use oestrogen cream but that may not be necessary at your age.

I am with Beverly in that I take supplements but have no idea if they help.

It is a good thing you have found a doctor who appears to know about LS.

Hi db,

It took about 4-6 weeks to get it under control. I didn't get the biopsy either. The maintenance has probably been more tricky because I would forget to use the ointment when it wasn't painful. When I keep up with the maintenance it's generally ok. I do have flare ups occasionally which can be difficult to pinpoint but usually stress related. I already had reduced my sugar intake from back when I thought I had thrush. I don't take additional supplements generally except some good quality vitamin c.

It's such a big thing to come to terms with and having good quality support helps in whatever way works for you be that through good medical advice, people who you can talk to about how you feel, self care and nurturing, food, space to de-stress, it all helps.

Take care,

Suzanne

I know this note is going to be very discouraging.

I have never had relief in the past three years that I have had LS. For me it burns all the time. It is mostly in my anus but goes all the way up to the top of my bottom.

But what I find that helps is the following:

Sitting in an Epson salt bath twice a day.

Use your clob twice a day in a flare up don’t over use it because that can make it worse.

For maintenance purposes use you clob three times a week.

When not using clob use Vaseline to keep things moist. Or Betaderm.

Diaper cream with zinc helps and also hemeroid cream for the itch.

Don’t use soap down there and definitely don’t use any diaper wipes.

I hope these tips will help you.

It is a crap autoimmune disease and as my doctor has said to me they really don’t know much about it. It’s hard for someone to understand this because no one talks about their private parts openly.

My husband looks down there everyday and we score it on a 1 to 10. He often says it looks really angry.

And yes sex is very difficult because we are scared to get hurt. But just take things slowly.

I hope his helps you.

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