From V.I.P. to V.I.P.

I am 27, nearing in on 28 years old. If you asked me what V.I.P. meant when I was 21, I would have told you it stood for very important person. If you ask me what V.I.P. means now, just 7 years later, I will tell you it means vulvodynia, IC, pelvic floor dysfunction.

Growing up I always had friends, but I would say I was somewhat introverted at times. I enjoyed my alone time. I like to stay up late writing screenplays, chatting on Compuserve or AOL or watching Lifetime. I am the kind of person who has always been able to find ways to entertain myself even when I was alone. I enjoyed hanging out with friends and doing typical young people things like going to the mall or calling boys and hanging up...but even if just once a week I liked to be totally alone.

Fast forward to college and everything changed. Life was on the go. I got a taste of the traditional version of V.I.P. (very important person). I became very outgoing and from about 18 to 22 my friends and I used to go to nightclubs every Thursday, Friday and Saturday night. We lived for it. We loved the music, we loved cocktails, we loved being social, we loved guys. 

We were kind of like the younger, Jersey version of the show Cheers. We went to all the same places all of the time. Everyone knew our names, we never waited on line, we got lots of free drinks, we partied with DJs, we made out with hot strangers and the list goes on. We were straight A college students by day and party girls by night. When I look back at it, we had no real responsibilities. Now knowing what real hardship is, it is nice to think about it sometimes.

I remember I had this "rule". I didn't like to sit in clubs. I loved my high heel shoes and always liked to be on the go. Sometimes I would go out at 9 pm and not come home until 4 am and I would stand or dance the entire time. Now this thought is laughable. Chronic pain is so hard on the body. I don't go to bars much anymore, but when I do, I always wanna know the sitting situation. I still like fabulous shoes, but I like to wear them in a chair. 

Being in college for me and being this V.I.P. nightclub goer was surreal. I was living in a fake world. Nothing seemed to matter besides my friends, house music, new clothes and parties. It was in no way reality, but it was fun.

I lived a "normal" transition into adulthood after that...working full-time for the first time, making a decent salary and still going out on Friday and Saturday nights whenever I felt like it. Then right before my 25th birthday the life changing pain hit for the first time.

Sometimes, I will admit I get slightly envious of some people I meet who didn't get hit with IC and such until 35, 45, 55 and beyond. I wonder, why me? Why so young? What would I be doing differently if I was given an extra 10 or 20 years without IC? Then I realize, it is not easy at any age no matter if it be 18 or 60. IC sucks. 

IC has made me change really fast. It has made me realize that health is the absolute most important thing in life for yourself and your loved ones. IC has made me love a one on one meal with my mom, or my husband or my best friend more than I could ever love any night out partying.

IC has really brought me back to some of my isolating ways. Sometimes it is hard to be in pain and be with all the shiny, happy people. I spend more time writing, watching movies and doing other things that were a bigger part of me during childhood, but that I put on the back burner in my early 20s. I do still like to socialize, but I don't do it nearly as much as I used to. I usually try to do something social at least once a week b/c I love my family and friends and don't want to be a complete hermit. But gone are the days of going out three nights in a row. I would collapse from pain and exhaustion if I did that.

I really enjoy gatherings in people's homes now more. They feel safe. There is always access to comfy seating and a bathroom. The nightclub world is no place for a person in chronic pain. I do get thankful for the times that I do get to go dancing or do something of that nature, even if those times are more few and far between. It has become a treat.

I actually don't mind my hermit ways so much as long as I am choosing them. I really do love to write and create things and watch movies.  But now and then there may be something I am invited to and I can't make it to because of the pain. Those are the times I resent IC. Going out all night or staying home and being a hermit are both okay, as long as they are my own choices. I don't like when I have to let IC choose for me, but sometimes I have to if my IC gets out of control. 

So here I am, a woman of almost 28. I have known what it is like to be a very important person...and now I know what it is like to be a person with vulvodynia, IC and PFD. Now that V.I.P. means vulvodynia, IC and PFD to me, it doesn't mean my life is over, it just means it is different. I am finding new ways everyday to educate, to love, to make changes and to do better. Sometimes I stumble, sometimes I succeed, sometimes I cry and sometimes I love my life. 

What is Vulvodynia?

Vulvodynia is a legitimate, chronic pain condition with no cure. People with Vulvodynia experience stinging, stabbing, burning, itching, throbbing or sore pain in their genitals. The pain is not caused by infection or injury. The pain can be constant or sporadic. This varies very much from person to person and day by day. The pain can stop and start unexpectedly, lasting minutes, hours, days, weeks, months or years. Patients can even go through a remission period of months or years and suddenly have the pain return.

Vulvodynia is said to be as painful as , if not more painful than more widely known pain pain conditions such as Fibromyalgia. But since Vulvodynia is under researched and under funded, much less is known about this illness by the public and even the medical community.

The cause of Vulvodynia is still uncertain. Many Vulvodynia patients seem to have some common factors such as: past sexual trauma or abuse, past large scale urinary tract or yeast infections and trouble having sexual intercourse. However, there are some patients who do not fit any of these molds.

Since Vulvodynia has few visible signs, the average person diagnosed will seek medical help on average from one month to two years before finding the correct help to truly manage their pain. Many women give up hope before diagnosis after being rejected or told “it is all in your head” by respected doctors, nurses and hospital staff who are simply uneducated about this illness. Many women will also be misdiagnosed with conditions such as urinary tract infections, yeast infections, bacterial vaginosis, kidney stones, sexually transmitted diseases and kidney diseases while searching for help. Many times when wrong medications are given for these conditions that do not exist in the patient, the woman’s Vulvodynia symptoms actually worsen.

There is also said to be an under reporting of this condition. Up to 18% of all women will experience some low grade symptoms of Vulvodynia in their lifetime, but do not seek help because they are embarrassed. Usually those who do seek help and are eventually diagnosed correctly are the more serious cases: women who have been having vaginal pain for a month to a year that is so high on the pain scale it interferes with all of their daily activities.


What Vulvodynia is NOT:

Although Vulvodynia can be debilitating at times it’s important for the public to understand that Vulvodynia is NOT a sexually transmitted disease, infection or cancer. It is also not contagious.