Newbie

Hi Kelly,

So sorry to hear about your recent problems and that you've been diagnosed with LS. I like others have been suffering for years. You will have periods where you feel ok and also periods of flare ups, don't avoid intercourse if you are comfortable with it, use lots if lubrication and make sure your partner is aware of what you are going through as their support and understanding is invaluable. LS is not something you can pass on so don't worry about that. Ask your GP for Hydromol or something similar to wash yourself with as soaps and shower gels are a no no, I use Dermovate ointment daily when having a flare up and then twice a week if not, my flare up make me itch to the point of distraction, but others don't suffer this so everyone is different. Make sure you check yourself regularly and report any changes to your GP, as far as I know there is no cure for this as I don't think there is much research being done, you need to find things that work for you and try not to let it get you down. Keep reading this forum as there is always lots of invaluable advice from other sufferers.

Best wishes.

Hazel

Hi Kelly,

Glad to hear the cervical cancer was taken care of. I have had LS my whole 62-year life but was only diagnosed within the last year. It's very upsetting to Google images of LS when you've just been diagnosed, I know.

The one thing you'll hear over and over in this forum is you must continue to use the corticosteroid cream steadily no less often than twice a week. This is a chronic disease that can cause permanent scarring very quickly, so there really isn't time to mess with 'alternative' treatments.

I've been married most of my adult life and had two great kids in my thirties. Sex has been great or painful on and off as the LS flared up or calmed down. It's another chronic auto-immune disorder among so many we seem to have in this world these days. I hope you have a good gynae or dermatologist treating you and not just a GP.

This forum has good discussions between lots of women who were just diagnosed and more experienced patients. We've been busy on "Flareups of LS" and "Disappearing Labia" the past couple of weeks. Excellent advice and support there. If you post in those topics all of us receive notifications.

My personal advice is never make love while pretending it doesn't hurt. Nobody wins there. Your partner must understand that when you're flared up the friction of sex will make it worse. Be glad you've had a diagnosis and won't make the many years worth of foolish mistakes I made, which I talked about on the two discussions I mentioned, along with other women who want to help newbies.

Take care of yourself. No soap down there. No scratching. Cotton panties. Loose pants. Lots of oily moisturizing. Maybe look at your diet in terms of inflammation – easy on the sugar and alcohol. (But don't stress about every molecule you eat, that's just as harmful.)

Hope to see you back. It sucks that something this bad isn't appropriate conversation with most people.

Hi Hazel and Morrell1951

Thank you so much for responding to me, and your great advice.

I am only seeing my GP, she had me use the elocon cream for 4 weeks and has said i need to continue to use it every day, she hasnt asked me to go back and has said this is a life time condition. I havent been referred to anyone else.

thanks for the advice with regards to the soaps - i do tend to like highly perfumed body washes, will see what i can find to replace them.

Thank you so much ladies, sending hugs and best wishes

Kel

Hi Kelly,

I would recommend you ask your GP if you can be referred to a Dermatologist, It's hit and miss whether your GP knows enough about this condition. Also ask him/her for a prescription for Hydromol for washing yourself as it's quite expensive to buy over the counter, I usually get a 500ml tub which lasts for quite a while especially if you only use it on the genital area.

After reading this forum I also started using pure Emu Oil on the days that I don't use the corticosteroid (Dermovate) ointment. I usually put a pea size amount on at night before bed so it's not getting wiped off. It helps keep the area moisturised.

Hope you find something that helps.

Best wishes,

Hazel

Hi Kelly,

Ditto Hazel. My OB/gyn has me returning twice a year for monitoring. One of those appointments is at her colposcopy clinic. I've now been to one of those. The trained eye of a specialist is needed to look for early signs of squamous cell carcinoma, which LS patients have a higher risk of getting. Only if she sees something suspicious will she then do a punch biopsy. So this is why a GP is not quite good enough. I feel I'm now under a caring, watchful eye.

Thanks, Hazel. This is the first I've heard of Hydromol. I've been using hand made soaps with no scents and plain water on my genital area.

Hi Morrell,

Hydromol is brilliant, I think it's normally prescribed for eczema/dermatitis conditions, it's not perfumed so great for our condition. This is a really useful forum to learn from and great to pick up tips from other sufferers, before I found this I thought LS was a rare condition and suffered in silence alone. Keep up the good work everyone.

Nice avatar, Hazel. More of us should make nice profiles. It's a great forum!

Aw thanks ladies - thats briliant, will try and get hold of some of that Hydromol. I didnt even think about a gynae but see mine every three months at the moment for check ups after cc. when i go back in april will ask him to have a look for me.

Again i would like to say thank you for your kindness and responses - very glad i stumbbled across this site. :-)

Hi Kelly and anyone else on this forum.

Long time since I visited this forum, I am also sufferer since 1997 and am now 66 and this ghastly auto-immune condition has made intercourse so difficult.

Just one tip from a specialist I saw so you can have painless intercourse, use only pure Vaseline for a lubrication and put Lidocaine (pea size amount) about 20 minutes before intercourse, over the vagina entrance as this is a local anasthetic and takes pain away.

I also use Dermovate for flare ups and avoid all soaps and oils except Aqueous cream for washing.

I am about to try a new cream and will let you know if this helps.

Hope someone finds this helpful, I sadly have fushion of the labia and clitoris which can never be regained. I have given up with all doctors!

JD

Hi JD,

I'll just weigh in here with an alternate view, possibly biased my way-too-many years ignoring the pain of sex with an inconsiderate husband, then overdoing the friction once my clitoris had grown over with a warm husband. Applying Lidocaine to numb myself sounds too much like performing a service for Husband Number One, although I realize it's only the outside, the part that's tight and scarred. But too often my perineum has split during sex. I'm glad for you that you have the kind of relationship where physical intimacy is that good. Myself, the last time I tried I had a raging yeast infection the next day from a careful and brief try. My husband can tell if I'm a bit uncomfortable and won't allow me to grin and bear it.

HI KEL. I have looked up the ELOCON cream you have been prescribed. It is mometasone furoate and is 50 to 100 times stronger than hydrocortisone.

I would like to say that most LS sufferers are prescribed Dermovate also known as Temovate etc., , which is clobetasol, and it is up to 600 times stronger than hydrocortisone, much stronger.

Perhaps your LS is only mild - I do not know.

If your symptoms are severe it would well worth discussing this with your doctor.

Hi all, First of all Kelly my heart goes out to you - the horrid shock of a diagnosis on top of you previous cancer.

Astroglyde was recommended by my gynae for sex, it is non irritant non greasy

I use Diprobase to wash with- it is an excellent moisturiser and i use it for my whole body.

As very wise Morrel and others have said, Dermovate is a VERY potent steroid, I would be reluctant to used other steroids on my "days off" as a side effect of steroids is the reduction of the thickness of skin - (hence normal advice is not to use on mucous membrane or the face-but because it is THE only treatment so far it is deemed the risk factor is reasonable)

Othe advice i was given use Dervovate daily while the condition is bad and use moisturising creams- like those suggested when symptons quiescent

ALWAYS check the chemical component of any substance going on to or into you body -( I found that I was self treating my sinuses with a product that medics would love to see banned as it works immediately then causes dependency then thickens the mucosa making the condition much worse and difficult to treat)

DO examine yourself regularly. Report ANY changes to your medic asap

Use sex toys with your husband- a support group in Birmingham invited a sex therapist to help members with this very important part of a relationship and arranged for us to visit Ann Summers whose staff were kind helpful and understanding - a pre arranged appointment made the visit much less embarrassing.

Do have a Consultant overseeing you condition- dont let the GP budget constraints deter you

Good luck Sue

Thanks ladies :-) thank you for taking the time to repond to me - much appreciated

Sue - i have a gynae seeing me regular although not for the lichen. i will ask him to look when i see him next. again thank you for all your advice xx

Hi Kel and everyone,

Your GP should have referred you to a colposcopy clinic for your LS - mine took one look and I had an appointment at the Women's hospital 2 weeks later. They were so kind and lovely there!

My LS is only mild and I use betnovate once or twice a week and cetra ben every day. The cetra ben (prescribed by my GP) is miraculous, soothing and it really helps to keep flare-ups at bay. I simply use water to wash with - I am allergic to lanolin which is in lots of things so avoid most commercial creams and moisturisers.

What a roller-coaster ride you have had! I do hope things improve for you soon. Good luck.