Vulvar Hypospadias and UTIs: a personal experience
So my vulvar hypospadias seems to have caused or contributed to yet another catastrophic uti within 6 months of the last one.
I've been dealing with utis all my life, though I wasn't taken seriously as a child and made to suffer through it with cranberry juice and being told I just didn't drink enough water (I'm autistic so I *do* forget, however even when I'm fully hydrated my body seems to just, forget to utilise that water to its fullest extent?). Anyway, bottom line is that this has been going on for a while.
I didn't get frequent utis for a few years - not sure why but I have a couple of theories. But in the last few years they've come back in full force and honestly they're debilitating.
They suck so badly. If you've never had one, allow me to explain how they feel like:
So you go to the bathroom. Right? And you go to piss. But you sit or stand there and it starts to hurt. Like a burning hurt. It feels like being scalded from the inside out and through your urethra. For me I normally pause. Let the five stages of grief pass over me, then resume the daunting task of emptying the rest of my bladder.
And you will feel the need to do this frequently. You leave the bathroom. Go sit down somewhere else (it hurts and you can still feel a slight burn where your urethra exits your body). You sit down. Try to focus on something else. You need to pee again. You go to pee. It hurts. You leave the bathroom. You sit down. You need to pee again. You go to pee. It hurts. You sit down.
For hours, sometimes days. This disrupts your life.
At an important event (like I was today). Doesn't matter. Pain. You need to pee. You go to pee. It hurts. You return to the event room having cried your eyes out over the pain. If you're me, you don't cry now you're on T. But this is the exception. My body musters tears, somehow.
You go to pee. You cannot produce any liquid from this hole any longer. It doesn't matter. You still feel like you need to pee. Every drop feels caustic.
You go back to what you were doing. You try to ignore the sensation this time. Drink a shit ton of water. How long can you play this game of urine chicken?
Ten minutes? Fifteen?
Your urethra physically throbs in pain. You go to the bathroom. It's pink this time. Urine shouldn't be pink.
You sit down. You try to do something else. Anything else. You try not to think about the toilet.
You go to the bathroom. It's red this time. You want to cry. You've run out of water. You drink some more. You return to the bathroom. It's still red.
You go to the doctor. The doctor hands you a 3-day prescription for antibiotics.
You go home.
You take the pill. You need to pee. You go to the bathroom. Nothing's changed. You give it time. You return to the bathroom. It hurts a little less now. Your urine is dyed brown by the antibiotics. You think you've seen enough colour in the toilet bowl today.
You go to bed. And make a tumblr post detailing your experiences with utis. Perhaps. You think. Perhaps this might help someone feel less alone.
Why did I write this?
Right now, hundreds of us on tumblr are suspecting or understanding ourselves to have vulvar hypospadias. This is when the urethra exits the body further down than what is considered typical. I have vestibular hypospadias, meaning my urethra is less than 1cm away from my vaginal entrance. Others have their urethra immediately on top of or inside their vaginal canals. This can result in other complications and increased likelihood of utis.
Utis are debilitating for anyone. For those of us of any gender with vulvas, the risk is already high. Vulvar hypospadias (which is probably more common than is currently thought) increases the risk of utis significantly.
Every so often, I see people questioning why vulvar hypospadias is considered intersex. When traditionally it was not considered such.
Intersex is not defined by suffering. One need not experience difficulties with their variation to count as intersex. However, for those who argue that difficulties are a requirement (an argument I reject) - even by that metric, the debilitating pain and life disruption caused by chronic utis is more than sufficient to "count" as a difficulty.
It very nearly damaged my career today by making it so I had to leave an important event early. That I had spent months preparing for. My variation is so under studied in cisgender people, never mind the fact I'm transgender and even if such studies did exist, they would not necessarily apply to me or my body with any degree of accuracy.
This is what chronic utis and repeated medical neglect look like.
