Found the cure to my vulvodynia

Hi everyone,
First of all, I wanted to express my sympathies with everyone posting on the forum. Vulvodynia takes a huge strain on your life and can change you as a person. I am 21 years old and have been dealing with what was diagnosed as "vulvodynia" for 7 months (I'd like to stress that this is not really a diagnosis but a catch-all term for vulvar pain when doctors can't figure out the cause or don't care to help you figure out the cause. I personally believe there is an underlying cause for everyone's vulvodynia). What a journey it has been. Going from doctor to doctor to find an answer. Interestingly enough, the doctor who found the solution wasn't a gynecologist at all... But a gastroenterologist. She suggested many things, one of them being a milk allergy or lactose intolerance. She had me eliminate dairy from my diet completely. Check all labels because milk/casein/whey/lactose is hidden in many foods that you would never expect! Within 48 hours I noticed a HUGE improvement. And since then, whereas most days I feel 20%, nowadays I feel 90%-100%. I wanted to share my story with everyone, in hopes that I could help another woman escape the misery of the burning, aching, and stinging of vulvodynia. Good luck to everyone, you are in my prayers.

Hi anonymous12345 - so pleased you found your cure! Isn't vulvodynia a wierd thing. So many different causes. Thanks for sharing your story - it all adds to our knowledge!

Hi anonymous12345, what symptoms did you experience? How did it start?

I am so interested to hear about the views of your gastroenterologist. I too am lactose intolerant, and have always suspected there was a connection between what I eat, and how I feel down there. Do you take any type of lactase enzymes as suppliments?

Hi everyone! Thanks for responding.
Loulou, I was happy to share my story! I am blessed that it is now a happy one.
Annie82, I woke up on my 21st birthday with a terrible burning sensation on my vulva area and my anal area. The burning was very intense. What a way to start your birthday! Throughout the following months, I would get fissures on my vulva and anus and they would take a long time to heal. I would also have this deep burning feeling that would come and go for days at a time. Went from doctor to doctor for 7 months (4 gynocologists, 1 dermatologist) and had no definite answers. Was misdiagnosed many times. One gynocologist tried to tell me I probably had herpes even though my blood tests were all negative, all swabs were negative, and the only partner I ever had was negative. The dermatologist told me I probably had lichen sclerosus after a skin biopsy showing minimal scarring. What I found was that many doctors give you their answer so you will stop coming back, but I wasn't going to give up. So I went to a GI doctor, who I would declare a saint if I could. I seriously owe my happiness to her. I am not bashing all doctors, my dad is one, but I did learn that not all doctors provide the best care. I feel 100% every day, except for the 2 days after my period... The deep burning comes back! But then goes right back away. If this is my only problem for the rest of my life, I consider myself very lucky!
Beejay, the only time I take the enzymes is if I'm eating out and am not 100% sure what is in my food. I also take a daily probiotic. What is strange is that I do not show any other symptoms of lactose intolerance... No stomach ache, gas, diarrhea. Only pain down there!
I am not a religious person, but I pray every night to give thanks that I am now healthy. I also pray for other women to find their cures. Best of luck to you three!

Anonymous12345--
So glad to hear of your success............I too have been battling this issue for months......I was actually wondering if it could be something I'm eating or drinking. I drink very little milk, but I know there is milk in things you can't imagine.
My question to you is.............did you have any other burning besides your vulva and anus? I have it bad there, however it is also in other areas of my body too.........sometimes legs, feet, arms, lips and tongue. Drives me crazy!!!
It all started in the vulva though and gradually radiated to other areas........I'm beside myself and have went to all kinds of doctors also. Very aggravating!! Ugh!

allforone, no I did not experience symptoms elsewhere. My symptoms were all limited to my underwear area. It wasn't just the milk I was drinking (I wasn't drinking that much), but the cheese and butter I was consuming daily as well. Once I cut all that out of my diet, I started feeling better.

When I flare, I do too sometimes burn in other areas. The way my physio explained it is that one nerve (down there) gets ticked off...and starts communicating with other nerves...and gets them all ticked off. At my worst point, I burned even in my arms, back, boobs, face, etc. At my very worst, i could even focus on my hand...and make IT BURN! It's very much your brain involved...stress...nerves. Since then, my flares pretty much stay in just the legs. And, I am learning to control those flares by reducing anxiety. Anxiety is my trigger. My skin has been sensitive ever since I got V over a year ago. I rub baby oil all over my skin every day...since I feel the slightest bit of dryness. All this has improved though now that I understand a little how this beast operates. So, you aren't the only one that had other burning areas. And, yes, it does get better.