It’s spooky season, and like every year, I have mixed feelings.
I’m an introvert, so the idea of strange kids coming to my front door horrifies me. I’m not OK with scary clowns — the regular ones are terrifying enough. But I do enjoy a fright during a scary movie. I’m the type who will scream at the slightest hint of suspense, then giggle like a madwoman to shake it all off.
Life with endometriosis is full of suspenseful events: the opening of test results, waking up from surgery to learn which organs are still intact. Or, as I experienced recently, silent organ failure.
It all started with a passing reference to my kidneys.
“It could be a sign of kidney failure.” This is what the doctor testing my urine two weeks ago told me. I am now due to have additional tests, including multiple blood samples and imaging tests. I also am being referred to an endometriosis specialist.
Yet, nothing came easy. At first, I didn’t even react when the doctor mentioned my kidneys. My biggest fear when it comes to endometriosis is that it develops into a form of cancer. Being informed I was showing signs of kidney failure felt akin to being told I had been nominated to a Grammy when I only sing in the shower. It felt unrealistic. So, I forgot about it for a while.
Two days later, I was wide awake at 2 a.m. when the thought dropped into my brain: Endometriosis and kidney failure — it’s a thing. My job as a science writer means I am continuously researching and reading medical documents, so I knew this.
Endometriosis can spread to one or both of the ureters, affecting kidney function.
While this is rare, everything in endometriosis is “rare,” because there is not enough research. And because kidney symptoms can be easily mistaken with regular endometriosis symptoms (lower back and pelvic pain, discomfort when urinating), it is only discovered when it is too late.
The next morning, I emailed my general practitioner. She responded that because I was on hormonal medication, it would be unlikely that things would worsen. But the truth is that there is no medical evidence of that. Hormonal medication simply manages symptoms. The disease can happily carry on doing its thing, and since it behaves like cancer, it can spread elsewhere, slowly corroding essential organs.
I sent another email, deeply apologetic but insistent. I now have the appointments scheduled to hopefully get some answers, and possibly save my kidneys.
Emotionally, I’m riding a roller coaster.
Since last week, I have made three extravagant purchases, including a gadget that froths my oat lattes to barista levels. I have cried watching “Buffy” and listening to poet Andrea Gibson.
I told a few friends, only to immediately ask them to keep schtum. It felt sickening to think about how others would view me, Jess, the one with endometriosis. There is nothing more deflating than missing someone, and having them only contact you after seeing endometriosis on TV: “Hey, your incurable disease is on the news. Did you know?”
I also didn’t want to remind others of yet another failure of mine. Another biological flaw. “There she goes, always sick. Who would want to hang out with her? Who would date that mess?”
Except, this time, it’s my organs failing me.
Eventually, I used Instagram to raise awareness. No doctor had ever warned me about silent organ failure. No one reminds us to keep an eye on our kidneys and have them checked if we suffer from random UTIs. I felt for the sheer number of endometriosis patients ignorant of this, just like I was.
The best response I got came from the coolest of guys: “Kidneys are for the weak.” It made me giggle and feel badass and understood. Then, I went back to being teary.
I didn’t want concerned messages or pity.
I didn’t want those who generally ignore my existence to suddenly feel guilty and reach out. It all became too much. So, I closed my social media and spent the weekend hiding under a blanket, only moving to chase my dog Jarvis around or take him for a walk. We got soaked during one of our outings, and I cursed the universe, yet felt super alive. Today, I may cry a little when no one is looking.
In public, I will be walking Jarvis while wearing my favorite cowboy boots paired with a leopard-print coat. Because that’s how I roll.
My kidneys can bloody well keep up.
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to endometriosis.
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