I finally understand how absolutely fucked up my body really is. But, more importantly than understanding that is understanding the ‘What’ it has meant for my life- some of the paths laid out for me, by medical issues and unexplained problems, that I had NO control over. I’ve been left to feel as if something was wrong with me from a very young age… but no explanation left me alone to suffer in my own body. Trapped. I can remember, some of my few childhood memories, at a young age, I had bladder pain and problems. Wet the bed most of my childhood and was made to be embarrassed my entire childhood over this. Instead of seeing if it was medical, I was drugged at sleep overs and fluid restrictions imposed starting at 7 so I didn’t make a mess. I despised sleep overs and always preferred to be home.
Imagine. You are trapped in a body that does what ever it wants and reacts so opposite of how it should. That’s literally all I know. But I had no idea this was my body, not my brain. I thought I was just really fucked up and maybe blocked out more violent sexual abuse than what my brain chooses to remember from my childhood. One more layer within layers of psychological pain on top of physical pain has made a perfect storm of devastating confusion.
Anyways, my bladder has always been an asshole. Painful. It always seemed worse with my periods so I just assumed it was another period related pain to deal with. I started my period in 1988. I was absolutely miserable and the pain was nauseating. My momma told me to ‘get your ass up and get moving, you’ll have a period your entire adult life so figure it out now!’ If you knew my momma, you didn’t argue. I moved. I didn’t complain, it was ‘normal’ and I was to figure it out. That meant my skittle concoction of Motrin and Tylenol. Thank God that’s OTC and I didn’t need permission to take it.
Fast forward … bladder pain just gets worse the older I get and with each surgery and catheterization… but the pain starts extending down my bladder to the urethra and then the whole clitoral area… One day, I end up at the doctors office because I could barley walk. I had what I thought was an Infection on the clitoral hood. It was yet another new symptom, scary and SO PAINFUL! I sobbed when the NP took a quick swab to test for yeast. She told me The whole clitoral area was visibly red, swollen and raw. Swab showed a yeast infection. I wish now I had pushed for better diagnostic help. I suffered the next 15 years in agony because the flares were something I hadn’t expected to continue to deal with. Each time it flared, I jumped on the diflucan to treat the yeast, as well as topical steroidal cream for said yeast that is so strong it can only be used for three days, like twice a day.
So, imagine…. the pain I am experiencing is at the center of the pleasure and pain sensors… but the signals are all fucked up and it hurts to be touched, you can’t even wear underwear! Imagine trying to wash when soap causes a flare or wearing jeans that rub and causes a flare. My entire vagina is on fire and it has been for years. I saw the Urologist that dismissed my bladder pain as surgical related. No matter how long it was after my last surgery, the doctor believed it was too soon after my last catheterization to say it was related to anything but being cath’d! Ugh! They kept giving me expensive new bladder meds to stop the urgency I complained of but I didn’t think the clitoral pain was anything but recurring yeast infections.
I finally hear the term Vulvodynia. Son of a…. you’re kidding me right!? All these years, I am told yeast! Looking back now, I know I’ll always have a yeast infection and I think that initial diagnosis of yeast was secondary to the real issue of vulvodynia and if only I had know then, what I know now. I have localized vulvodynia. I didn’t get that official diagnosis until 3 months ago. I have such massive clitoral pain that I can’t wear jeans, most underwear rubs the area and creates pain and flares. You don’t allow anything to rub the area and sexual contact with the area creates a lot of pain.
It took over 40 years to get a full picture of my overall health issues. I must say I am pissed off. But where do I send my anger? Where can I direct it? I have no where to put it. I can’t blame any one doctor. Maybe the medical community as a whole? Logically, I know it isn’t their fault that my body is jacked up but maybe, just maybe, they could have helped diagnose me so I could work through the social awkwardness understanding it wasn’t me, and what’s wrong is physical.
Beyond the anger is a deep sadness. I see all the ways my body has created more problems and doubt for me. Years and years of doubt that didn’t need to be there. Years and years of misunderstandings causing more pain in my marriage. It’s hard to accept that life could have been completely different if I had only known, it was medical, not psychological.