Endo Stories: Sharing the Pain
Endometriosis is a condition that affects 1 in 10 people who are assigned female at birth. Despite that, 54% of people don’t know what it is – rising to 74% of men. We want to help change that.
In the run up to Smutathon 2020 on September 26th, we’ll be sharing weekly ‘Endo Stories’, written by other bloggers, authors, and awesome people we found on Twitter. They’ll tell you about their experiences with endometriosis, and about some of the challenges they’ve faced, from diagnosis to treatment, from sexual pleasure (and pain) to fertility and menstruation.
Today’s story comes from Smutathon committee member Jayne Renault, though it actually belongs to her mother. As well as sharing her words with you all today, Jayne will be joining the rest of our team in September as a featured author for our Smutathon 2020 event – she also writes at jaynerenault.co, and is the Erotica editor for Bellesa Reads. Find her on Twitter at @jayne_renault and please consider donating to Endometriosis UK to help them help people all over the UK who are struggling with endometriosis.
I don’t know when I first learned about endometriosis, but I know it was my mom who educated me on it.
I probably have endo myself, but I’ve not yet been diagnosed. I’ve honestly not put enough effort into getting a diagnosis because my faith in the Western medical system’s approach to reproductive health care is all but dead. I’m tired of not being trusted to know my body better than someone who just met me and doesn’t care about my wellbeing.
But my mom has always been convinced that I suffer from it. I feel her judgment is sound; she is a reluctant expert on the matter.
Since there’s no chance I’ll see my mom again for at least another year between significant geographical distance and pandemic, I took this opportunity to chat with her.
This is her endo story.
My mom’s endometriosis diagnosis was an accidental one.
My parents had wanted to have a few kids, and it took them years to their first one – me – stick. So right after I finally came along, they started fertility treatment to try and expedite baby number two.
With that came a diagnostic laparoscopic surgery, where they happened to find her riddled with endometriosis — on her uterus, ovaries, and around and inside the fallopian tubes. It was never concluded, but the chances that this was playing a role in the fertility issues is reasonably high.
Her second pregnancy then was brutal. Like, quite threatening to mother and baby kind of bad. My mom’s mental health crashed, and remained disastrously low well beyond surviving my sister’s birth. It was here that things with her body were really falling apart too. Her periods were markedly heavier than anything she’d ever known prior to that, and with them came significant amounts of regular pain.
Even though she had already been formally diagnosed with endometriosis by this point, the (*cough cis male cough*) doctors sloughed her off with every other excuse to diminish or deny the existence of the pain she reported. She’d just had a baby; things needed time to bounce back. She wasn’t mentally well; it was all in her head.
Because there’s no way to test for pain, there’s no way of proving it; so it’s always easier, especially for those who can never empathize and whose medical training is based predominantly on research conducted by and on cis men, to assume it’s simply not there.
It most certainly was there.
Her periods were so heavy and strong that two super-strength tampons and the biggest pad you can buy at the pharmacy still weren’t enough to save her from regular public accidents. The pain that came with them would track down her right leg, and was so excruciating and powerful that it would throw her back out of alignment.
For years and years.
But, of course, it was all in her head.
These monstrous heavy flows and worse pain would haunt her for the next decade, with doctors not doing anything to delve deeper into the possible source of it. Because again, they didn’t really believe it was there. Between her regular dips in mental health, which could easily be associated with this extreme, chronic pain, and other physical health problems that arose during that time, it was easier to slough it off than acknowledge that there might be a deeper underlying issue compromising her quality of life.
In the end, after decades of being failed by medical doctors, it was a chiropractor who figured it out.
My mom tried everything she could to deal with this back pain, from prescribed pills to acupuncture. Regular chiropractic treatments were in there too. And her chiropractor — who was also a family friend because such is the way in a small Prairie town — was absolutely confounded. He could not figure out why he couldn’t solve my mom’s back problems.
After attempting everything he could think of, and many conversations later, they finally pieced some things together to make it all click. He remembered a case where endometriosis had latched itself to a patient’s spine.
Finally, armed with this knowledge and conviction in a story that mirrored her own, my mom went to yet another doctor and explained her theory: that she thought her endometriosis had spread to somewhere around the base of her spine and it had been ruining her life for the better part of two decades. Again, this was well after being diagnosed with it.
Almost immediately, they treated her with a Mirena IUD. After her body adjusted to it, she never experienced that ruinous back pain ever again.
In reminiscing with her about all of this, I realize that I do have memories from as far back as my early childhood of seeing her levelled by this pain she described. I didn’t know what was happening then, just that she clearly wasn’t okay. She physically could not walk when she was in that state.
It is worth noting that this is the same woman who, when she stepped on a piece of wood and impaled her foot on a massive spike of a nail, didn’t waver as she calmly asked a young Jayne to call for help.
Whatever was going on inside her body on a monthly basis was notably and demonstrably worse than stabbing herself through the foot with a rusty nail.
My mom’s story is unfortunately nothing special. It’s quite typical on its main plot points. At least a decade of chronic, debilitating pain. Doctors doing nothing to investigate the root cause of it, never mind treat it. Her having to figure it out for herself and demand the care she deserved.
The rant I could launch into from this springboard would fill entire bookshelves, but neither of us have that energy for that right now. Simply reliving my mom’s story has proven exhausting enough.
I wish medical students were trained to better handle the reality of pain experiences, despite not having a tangible way of testing for it. I also wish they would conduct more research on all bodies to have more comprehensive education for health care professionals from day one.
But most of all, I wish more doctors listened to their patients and cared about them enough to take their reports of pain seriously. No one should have to live decades of their lives going insane from very real pain only to be told time and again that this pain doesn’t matter, or simply doesn’t exist.
That is why organizations like Endometriosis UK are so important, and why I’m so happy Smutathon is supporting them this year. By increasing knowledge and awareness of endometriosis, more people will be empowered to recognize their condition for what it is and get the treatment they deserve.
More people like my mom.