I have been living with this condition for about 3 years. I was diagnosed after a couple of white spots appeared around vulva area. I had a biopsy which cofirmed LS.
At first it was just itchy and uncomfortable. As time went on the whole area around and inside are now affected. This has completly taken over my life. I am unable to participate in any sexual activities as the pain is too great and the area starts bleeding.
I have tried everything from steroid creams, tape containing a pain killing agent to a numbing cream. They helped at first but then became less useful.
One thing that has helped is using aqueous cream to wash the area as soap or shower gels cause irritation. My consultant has also said about wearing cotton knickers as, it cause less irritation.
To date I am having six injections every three months into the affected areas. It helps but only last for six week max. I am given gas and air to help with the pain while having the proceedure.
I also have RA and Fibro
So sorry to hear about how difficult this has been. Wondering if you could say what the injections are that you get every three months into the affected areas--I'm not familiar with this procedure. --Suzanne
i will find one of the consultant letters and then post what it is. Happy New Year
I think to understand that you wish people's thoughts on what you have been trying in order to manage your LS. I'm wondering what kind of injections your are given. Would you be able to tell?
The main thing for me to combat LS is the use of Globetasol ointment. (Maintenance level is twice a week.) Next to that I'm using a small spray bottle (the kind used by women who just delivered a baby works very well) filled with warm water and three pinches of baking soda. Regular baths in baking soda baths (1/3 of a cup) have been very soothing as well.
Then there is the diet: NO sugar, alcohol and caffeine. I follow an alkaline diet - no gluten, no dairy. Small portions of meat.
Perhaps the above is of some help to you as well.
Forgot to mention: it is best to abstain from any sexual activity. At least till things start to heal and in general look better.
hi hanny32508. You make some really good points. thank for the info. Sexual activity i had to give up so dont bother now. I will look up the name of injections for you
Forgot to mention the use of coconut oil after rinsing to keep things comfortable down there. Have used emu oil at times.
Hi - sorry to hear that you are going through this. You have a lot on your plate and unfortunately stress can be a major contributor to having a flare up. I've not heard of having injections for LS. If it is not working would it be an option to try something less stressful? A lot of us use Clobetosol, or similar alternating with estrogen to keep everything supple. Salt or bi carb baths/spritzing, cutting out certain foods works for some and drinking lots of water. If you need any more info yell out we are all here to help each other. Hope 2015 finds some relief for you x
You have had a tough time - Where in the world are you- as the others have said the tape treatment has not been mentioned before - and I imagine the injections are steroids? Do you see a gynae or dermatologist- Gp of vulval specialist?
As Deb said stressful situations and anxiety are THE biggest enemy of "LS-ers" So do try and have fun and it is said that just by smiling a lot the body increases the output of endorphins- the bodies defence against stress
Take care and Good Luck
That shouldhave said OR vuval specialist
Have you tried changing your diet and vitamins and gave you had your hormone levels checked many woman have said they have seen a real difference doing all that I don't have a hormonal imbalance I have started taking vitamins and no longer eat gluten the effects are to soon to tell but I can feel a real difference in not eating gluten I'm no longer bloated my stomach doesn't hurt all the time and I feel like I have more energy maybe I had an intolerance without knowing hopefully you find something that helps
Hi Shazmil. sorry you are having such a rough time. moisturisers seem to be a way forward. my gp prescribed Epiderm cream which can be used as a moisturiser or a wash cream.it does sooth the soreness and itching . i have seen an ad on the intranet for a herbal remedy for LS claimed as a cure. it also contains emu oil. its expensive but im willing to trial it if no one else has and report back
RA and fibro on top of LS sounds tough. You mention that the LS is also inside. Are you sure you don't also have Lichen Planus? That goes inside the vagina and is very painful. If you haven't experienced improvement in three years with proper use of the right steroid ointment – that sounds severe.
I think the best thing we can do when overwhelmed is explore stress management techniques. Not sitting-on-a-cushion meditation, but mindful awareness. I was an angry drama queen when I discovered these methods. The practices really settled me down and improved my stress-realted conditions.
I will try the things you mentioned. Thanks
Thanks so much. I will try these.
Hi there. I live in Bristol. I see a gynea and dermatologist at Southmead hospital. He is really great and very understanding. Thanks for all your help
I will talk to my consultant and ask if it may also be planus. One of these conditions is depressing never mind having all three. I feel like iam constantly battling and losing. Thanks for your assistance
shaz
Hi Shaz--I know what you mean by constantly battling and losing. I have a number of autoimmune problems, including LS, too. Have you checked out the autoimmune discussion section here on the forum? I spend most of my spare time researching what's happening in the field of autoimmune disorders. I am determined to get better and not keep developing more and more disorders, as I have seemed to. We seem to be the canaries in the coal mine with overactive and misdirected immune systems, likely due to a disrupted gut bacterial balance--one that maybe didn't get the correct information and wiring early in life. One thing that seems to help me a lot (though not cure, so far) is eating whole, unprocessed foods that is free of grain, soy, and dairy, and sugar. Some people with arthritis are improved with a trial of removing nightshade veggies also (potatoes, bell peppers, etc.). If you haven't already, try googling autoimmune diets and you may find some good info. --Suzanne
I will look forward to the result. Thanks
Hi suzanne00. You so very good points here, I will check them out. I also suffer from b12 deficiency.
Thanks. Its goid to able to talk to people in the boat.