A short video about periods makes its way onto my newsfeed. There is a woman lying face down on the floor, moaning in pain. Inspirational music swells in the background as a man (assumed to be her husband) enters the room with water, a heating pad, and some paracetamol. He sets them on the floor by her face as the music fades away. Text pops up on the screen: “My wife has extreme period pains...”
The tone was sweet and cutesy, but it read to me like a piece of horror. I knew the woman consumed by her own pain wasn’t just experiencing a “normal” menstrual cycle, and yet a period that left her immobile and face down on the floor was being treated as run of the mill.
This commercial is only one example of a phenomenon we should all, by now, be well aware of: people who menstruate have been served a major disservice by the way their painful, heavy, and frequent periods are treated as the norm.
The unfortunate truth is that many reproductive diseases are difficult to get diagnosed, and many sufferers are left to their own devices, face down on the floor with a hot water bottle and a few painkillers.
Men’s pain is much more likely to be legitimised and treated than women’s. Women are far more likely to experience chronic pain than their male peers, but are less likely to be taken seriously by medical professionals. It wasn’t that long ago that women with any number of complaints were diagnosed with hysteria. It was a catchall for the pain male physicians couldn’t quite wrap their heads around: the physical and biological pain that comes from being a woman. Although the medical field has improved since those days, pain sufferers still face a world where validation is scarce and diagnoses are even scarcer.
Endometriosis – when the tissue that lines the inside of the uterus is found growing, instead, outside of it, is one of the many painful diseases women have a hard time getting taken seriously, despite it affecting nearly 200 million women worldwide. It is typically found on reproductive organs, but has also been found to grow on the bladder, intestines, and surgery scars. Being diagnosed with endometriosis is a notoriously frustrating and lengthy experience.
It’s not fatal, but it can cause a lifetime of abdominal pain, heavy periods, and even infertility.
Reina Sulton, a 25-year-old woman living in the United States, told me she had experienced extreme pain that came with her period from the age of 11. It would last up to nine days, and was often so painful that she stayed home from school. Despite frequent complaints to her doctors, she wasn’t diagnosed until age 23, when an ovarian cyst that had gone previously undetected ruptured, and another was found on the opposite ovary.
The road to getting a proper endometriosis diagnosis can be long and difficult. The majority of patients are diagnosed through laparoscopy—a surgical procedure where a long, thin camera is inserted through an incision in the abdomen.
Obtaining a diagnosis takes an average of ten years, and in that time patients often see a number of doctors before even learning about endometriosis.
Endometriosis isn’t considered fatal, it just leaves people suffering a lifetime of debilitating pain.
“It\'s incredibly frustrating,” Reina told me. “It\'s annoying to know that I\'ve had this disease for so long, but my pain was considered a normal part of womanhood.”
Many people who menstruate grow up hearing horrid tales of period pain. Excessive bleeding, painful cramping, and pain with intercourse—all symptoms of endometriosis—are often treated as part of the deal. That normalization makes pain sufferers question their own experiences, and makes it far less likely those experiencing symptoms will reach out and ultimately get help.
Kaye Sedgwick, a 38-year-old living in the UK, says she complained to her doctor about painful, heavy, and frequent periods as a teenager. She was told by her general practitioner she would grow out of it, or that the symptoms would resolve when she inevitably gave birth as an adult. She lived with the symptoms for ten years, believing it was all in her head and that her pain was exaggerated. When her regular doctor was on leave, the temporary replacement referred her to a gynecologist who diagnosed endometriosis.\x3c!--kg-card-begin: html--\x3e\x3c!--kg-card-end: html--\x3e
Kaye’s experience is hardly an exception. Medical bias causes many people who menstruate unnecessary pain and misdiagnoses. Despite women making up 70% of chronic pain sufferers, most pain studies are conducted on males. Women are less likely to be prescribed painkillers, are more likely to be misdiagnosed or discharged while having a heart attack, and often wait longer in emergency rooms.
“Most of the time it felt like I was screaming into a void,” said Kaye. “After my diagnosis I was incredibly angry and felt I’d been let down.”
It’s not just the physical burden of chronic pain either: Kaye now sees a counselor to help work through the anger and resentment she feels after her journey to being diagnosed with endometriosis.
Groups aimed at increasing awareness and fighting for better medical attention have popped up all over the world. While awareness of endometriosis grows, resources don’t seem to be catching up. The United States has been cutting funding for endometriosis since 2016, and its research is among some of the least funded. Endometriosis isn’t considered fatal, it just leaves people suffering a lifetime of debilitating pain. It seems some systems are just fine with that.
“Am I hopeful [for the future of endometriosis patients?] Not really,” said Reina, who has had to delay her own excision surgery due to the COVID-19 pandemic. “Pain issues that involve reproductive organs are so rarely taken seriously. It feels like a low priority for people right now.”
Although awareness is growing in the public, the same seriousness is lacking from medical professionals and research institutions. That makes the future seem grim. And when you’re facedown on the floor in pain, armed with a handful of Tylenol and a hot water bottle, it’s a future that feels much too far away.\x3c!--kg-card-begin: html--\x3e
I started taking the oral contraceptive pill when I was 17. Most of my friends did.
The Family Planning Clinic was across the road from my high school in rural New Zealand, and the pill was provided for free on prescription to under-22s. This was almost 20 years ago, but it’s still the case in New Zealand: many contraceptives are free for under-22s, and cost a small amount for everyone else.
Teachers didn\'t bat an eye when we said we had to leave class early to go across the road. While I’m sure there were, and still are, sections of society that don’t approve of providing young people such easy access to contraceptives, my peers and I just considered it our basic right. We’d had sex education at school, and easy access to contraception seemed an extension of that.
I\'m now 36 and have taken the pill, on and off, since then. I’ve never had any problems with it, but have had to go off it from time to time when my travels and location have just made it too hard to access.
After graduating from university in 2006 I left New Zealand and didn’t return (to live) for over 10 years, instead working, studying, and sometimes just travelling all over the place.
Only around 12% of US women take the pill, with sterilisation being a more popular form of contraception at 18%!
Spending time in various places has taught me a lot about access to contraception around the world, but some of my findings might surprise you.
The first time I went off the pill was when I lived in Japan for 18 months, in my early 20s.
Word among foreign women residents of Japan was that getting the pill was just too hard, so I never actually tried. First, there was the language barrier to contend with: the one time I did have to go to the doctor for a relatively minor test left me in tears after nurses instructed me to do things I didn’t understand, and then a doctor explained my problem in very broken English.
Other foreign women warned that getting hold of the pill was a rather invasive process. Indeed, the pill was only legalised there in 1999 (less than a decade before I lived there), and isn’t covered by Japanese health insurance. Only an estimated 1% of Japanese women of reproductive age use oral contraceptives, in contrast with 23% of New Zealand women and more than 40% of Australian women.
After Japan, I spent my mid-late ‘20s studying in the ACT.
As a student and a New Zealand citizen, I got a Medicare card, which gave me heavily subsidised and often free medical care, including contraceptives. As in New Zealand, getting access to the pill felt like my right, which I exercised without barriers. Thanks Australia.
While living in the US for 18 months, I went off the pill again. Although I had health insurance, navigating the American healthcare system is... complicated.
My health insurance company automatically set me up with a “primary care provider”, which is like a GP, but the waiting list for an appointment with them was nine months. So, getting the pill went back in the ‘too hard’ basket. Eventually, I figured out how to change my primary care provider and got an appointment more quickly somewhere else. But there were co-pays and out-of-network penalties to figure out, and receptionists who took one look at my insurance details and didn’t know what to do with them. I had to undergo a full internal exam to get a medicine I’d been taking safely for almost 15 years, which certainly felt like overkill. Even then, I could only be drip-fed one month’s supply at a time, and the pharmacy took careful note of the dates. My normal practice of skipping the sugar pills every couple of months wouldn’t work. Only around 12% of US women take the pill, with sterilisation being a more popular form of contraception at 18%!
In these developing nations, getting the pill is as simple as walking into a pharmacy, telling them what you want, and handing over less than a dollar for a month’s supply, or more if you decide you want a few months’ supply at once. Nepalis have access to five types of contraceptives for free. For me there was no need for a prescription. No internal exam. No health insurance issues. No problem. (Although of course it’s a good idea to see a doctor for periodic checkups, and I did).
Despite how simple I found access to contraception to be in these countries, I am a well-educated, assertive, “older” woman who considers contraception a right. However, getting hold of the pill is not necessarily so easy for local women, and that’s reflected in the figures. Around 5% of reproductive-age women in Nepal use the pill, although around 50% use some form of contraception, with implants and IUDs being common among married women.
In Nepal, sex outside of marriage is still very much a taboo, especially for women, and even among more Westernised sections of society. That doesn’t mean young people aren’t doing it, but they do keep it quiet. Formal sex education is inconsistently taught in schools, and typical Nepali parents don’t discuss sex with their kids at all.
Married women tend to have some knowledge of different forms of contraception as a child spacing method, but that doesn’t mean they always have easy access to it, especially in remote areas. Plus, there is still a stigma around its use, as well as resistance on religious grounds.
When assertive, younger, unmarried women do request contraception from their doctor, they’re often met with resistance, hostility, or judgment. So while getting the pill might be very easy if you know what you’re doing and what you need, most young Nepali women don’t have the knowledge or confidence to advocate for their needs.
It’s unsurprising that different countries have different rules and regulations around accessing healthcare of any sort, and contraceptive/reproductive healthcare in particular.
The sex education I received as a teenager in New Zealand normalised the taking of the pill to me and my peers, for better or worse. My sex education was actually totally unremarkable and I barely remember any of it, but the fact is: it happened. It was unremarkable because it was normal. And following that education, the New Zealand healthcare system allowed young women to easily access what they’d learned about in the classroom. I was educated, and empowered, to understand the need for contraception and what was best for my health and body. The power of that shouldn’t be underestimated.\x3c!--kg-card-begin: html--\x3e