A Testimony to Endometriosis
TW: Mentions of Self Harm and Suicidal Thoughts.
“It’s just my period - it is supposed to hurt”
Those are words that I have gotten so used to saying, to friends, to co-workers, to anyone who would show concern when my period would get so bad that I wouldn’t be able to walk, or sleep, or eat. And it wasn’t just during my period. The week before, I would - am - so sore, so mentally exhausted, that I would more than often genuinely consider suicide or self harm.
March is Endometriosis Awareness Month. I have struggled so much with my endometriosis diagnosis, with the possibility that I have to spend the rest of my life with this pain, that I find no better way to process than doing what I do best - write.
December:
I’m in the ER for excruciating pain which I keep refusing to acknowledge. I can’t walk and I pass out on my way back from the bathroom to my bed - I call Healthline who tell me to go to the emergency room ASAP. My friends and loved ones practically have to force me to go. They do their tests, give me morphine, keep me for half a day, and send me home. They can’t find anything wrong.
It is the next day - I cannot eat food without throwing up, my stomach has chronic burns from using my heat pack, the pain won’t go away. I call Healthline again - they tell me to go to a private urgent care clinic. I pay the hefty fee and go to the clinic who refers me back to the ER, this time the surgical unit. Again, they do their tests, I have a CT scan done - all clear. After keeping me overnight and giving me nearly every pain relief under the sun - morphine, fentanyl, you name it - they send me home. They cannot find anything wrong.
I break down in front of a team of doctors who have told me that there’s nothing but fluid in my abdomen, so nothing to worry about. I may as well be delirious, having not eaten for little over 24 hours, numb from pain, and having just been told again that my pain was normal. A surgeon comes back in to talk to me privately after a while - he looks sympathetic, says he will put me on the waitlist to see a Gynecologist - the waitlist is over a year.
By this point I have read about Endometriosis and for once in my life my symptoms have felt validated. I bring it up with the surgeon that a laparoscopy is the only way to definitively diagnose Endometriosis but that is shut down - he reminds me, they already did various ultrasounds and scans, they cannot find anything wrong.
January:
I am visiting family back home in Pakistan, and I end up seeing a Gynecologist. They do their scans, everything is clear. They cannot find anything wrong.
I am borderline suicidal, I cannot fathom living a life with no answers for my pain, being told that my pain is normal. I refuse to give in, I refuse to accept the neglect of women’s healthcare - I beg, push, force for a laparoscopy. They concede.
The laparoscopy showed internal haemorrhaging - which I had been told was just fluid by the doctors in New Zealand, as well as endometrial growth.
I was diagnosed with Endometriosis.
Now:
It has been a relief to know that I have an answer for my pain, but there are so many more questions that I have that I will never get answers for. There is no known cause for Endometriosis, nor is there a cure. Nearly anyone who knows me knows of my love for children, and so the elevated risk of infertility, alongside various cancers, is something that I am still struggling with. While I wish I could tell you for sure that I live happily ever after, that I “accept my diagnosis” - I haven’t yet, and I don’t know when, or if, I ever will. And that is OK.
Post laparoscopy and removal of the Endometrial growth, I also wish I could say my pain subsided. I write this on the second day of my period. I have barely slept for the past 24 hours, with pain so severe I have struggled to get out of bed to wash my face and brush my teeth. I spent most of this morning crying while getting ready for Uni, from the exhaustion and frustration of my body and mind.
I will end this story on this note - please do not dismiss your pain. Healthcare for individuals with a uterus is so horrendously underfunded, ignored, and dismissed. Excessive period pain is not normal. Having incredibly heavy periods and not being able to eat from the nausea is not normal. Pain is not normal. It is time we stopped treating it as such.
Websites such as Insight Endometriosis, and Endometriosis New Zealand, and Women’s Health Action have some useful resources. Seeking support is daunting, but if there is anything you take away from this post, then let it be that there are people who understand your pain.
I understand your pain.
