Hi,a newbie here who's at the end of her rope :(

Hi everyone,
I'm not sure if I even have this but this forum seems like a good place to start. I have had this debilitating condition for 1 year that started off as burning everywhere,now its localised to two areas that range from burn to itch to irritation depending on what day it is,but it is always constant.. Ive had numerous STD checks,spent thousands of dollars on different gyno's.dermo's and other specialists and I still don't have a diagnosis. A recent biopsy after 1 year of dealing with this revealed Lichen Simplex Chronicus but thats about all. I have been suicidal with this condition and the pain associated with it.When i get thrush it makes the situation all the worse. I feel like I never want to have sex again,I've lost any desire for for it.My condition is irritated by excersise,friction,hair growing back there,sweat,sex,any contact
I am dying for the day when I can wake up and not feel vulva pain.Just writing these words is making me cry.It's not something you can discuss nor want to with people.
There's even been implication by gp's that it could be psychosomatic.Are you kidding me?? I'm currently taking antidepressants,steroid tablets and using Advantan Fatty ointment morning and night. I'm not seeing much improvement. Does anyone know of any groups in Brisbane that exist? I'm 36 and feel like I'm going crazy with this.
Is there any hope for people like me?

Hello, Oh my gosh..I can totally relate to what you just wrote. I am 36 and will be 37 next month. I have a constant burning down there and everything can aggravate it too, from hair growing back, exercise, walking long distances, wearing underwear, etc..you name it. I was also diagnosed with Lichen Simplex Chronicus, as well as vulvodynia. I don't know the difference and to tell you the truth, I don't think the doctors do either! It has been very frustrating and debilitating. I have had this for 7 months and give up hope all of the time. Today has been a very low day for me because the burn has been worse today for some reason. I constantly don't know how to plan my day because of my pain/burning. I hate wearing clothes. I am on a low dose of Amitryptaline, however when I increased it to 75 mg, it didn't really help so I lowered the dose back down. I like you have spent numerous of dollars on doctors, tests, products, prescriptions, you name it to still be miserable and suffering. I read where you are using Advantan Fatty ointment. What is that? Please don't feel alone and feel free to reach out to me anytime. I'm glad to find someone I can relate to, however pray that we find the relief that we deserve!

Take Care,
Jackie

You are certainly not alone - and your problem is not in your head! I can relate to what you are going through - I have the same troubles - bothered by my own pubic hair touching me! And don't even mention peeing and wiping - ouch! I've had this for years and found a few things that help. Amy Stein's book Healing Pelvic Pain is very good - well worth getting. Narcotic pain killers help me, but I limit their use to extreme flares when I feel like death is preferable. I figure then that it's okay to take one pill, rather than the whole bottle! LOL! I use hydromorphone, and I am very sensitive to meds, so the lowest dose of 2 mg is enough to help. I take it with some tylenol and coffee, which helps to increase the pain killing effect and stop the "high" feeling. I was told by the vulvar specialist that I should treat the pain like any other pain condition, with pain medications, such as ibuprofen or tylenol. I find those OTC products too weak now, so I use stonger prescription meds as well. I have found that any kind of cream usually just burns more.

When this condition gets bad, it is life altering. But it doesn't need to be life ending. You need better pain management from your doctor. And do not doubt yourself - it is not a psychological illness - it's psychologically distressing, but not caused by any sort of mental problems. Studies have confirmed this. Hang in there, and keep seeing the doc until you get some relief. Maybe a referral to a pain specialist, if your doc doesn't want to give you anything stronger. Good luck. Hope you find some help soon.

At one point i was told i had lichen planus. So after googling that, i was totally shocked to read that a couple of blood pressure medicines i was on were known to cause it. One being HCTZ. google your medicines, google the lichen simplex along with any medicines you may be on. It may be a long shot, but what the heck. worth a try. Now a days you never know. cindy