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The elusive diagnosis

Why aren't we talking about endometriosis?

The elusive diagnosis

“Are you drinking enough water?”

My family doctor clicked through something on her computer, occasionally peering at me through wire-rimmed glasses. I was in her office for the third time in several years, attempting to get a medical explanation for what she scribbled down as “dysmenorrhea” — severe cramps that hit up to a week before my period began and intensified during it, sometimes rendering me incapable of carrying out daily activities.

“Yes, about four litres a day,” I responded. These kinds of questions were typical. By this time, she had prescribed me a variety of painkillers, advised me to improve my diet, and speculated that I might be out of shape, despite my membership on the cross-country team. None of this had done anything for my pain, and that day, I was determined not to leave her office without an ultrasound referral.

My dad knows all too well what it’s like to get a call from me, asking him to come to where I am collapsed on the sidewalk mere minutes from my front door, cramps eating through my stomach. Once, my mother came home to find me crumpled on the floor, crushing pieces of homework in my hands to distract myself from the all-consuming pain. And yet, none of this compared to the time when I was 12 and passed out in a mall on the first day of my period, the ache radiating from my lower abdomen to dull the rest of my body. Somehow, despite all of this, I was worried that what I felt was merely a figment of my imagination, manageable if only I were stronger.

I did manage to obtain my referral that day and to schedule an ultrasound appointment. A few weeks later, I received the report: no abnormalities found. In some ways, perhaps testing positive for something — anything — would have presented me with a sense of relief, because it would mean that I wasn’t overreacting. But in many other ways, had the doctors found something, it could have been the beginning of a life structured around a chronic, incurable, and often misunderstood condition: endometriosis.

The Department of Obstetrics and Gynecology at the University of California Los Angeles defines ‘endometriosis’ as a condition wherein “the tissue that makes up the uterine lining [in the womb] is present on other organs inside your body.” In other words, tissue from a woman’s uterus can crawl into her fallopian tubes, spread into her pelvic cavity, and even plant itself in her lungs. There, it builds up, breaks down, and bleeds just as normally-located uterine tissue does. Eventually, scar tissue develops to mesh internal organs together. Not all women with endometriosis suffer symptoms, but those who do report intense pain with or without their period and sometimes even during sex.

It’s difficult to understand the extent of the pain without experiencing it, but one woman who lives with the condition likened the sensation to being hit in the ovaries with an axe. Others have written that it feels “like my uterus is sitting on a bed of razor blades,” or “like someone is taking a cheese grater to my cervix.” On top of this, it comes with high rates of infertility; for women who want to have a child, their physical pain might be compounded by the emotional strain of being unable to reproduce.

FIONA TUNG/THE VARSITY

For a condition that one in 10 women live with, endometriosis is remarkably difficult to obtain a diagnosis for. Among those who are aware of its existence, this difficulty is notorious. For starters, the condition takes an average of eight years to be recognized by a physician. The reasons for this are various, grounded in both the medical and the social.

To begin with the medical, the condition’s symptoms are largely invisible; they’re also often misunderstood to be those of gastrointestinal, rather than reproductive, disorders. A laparoscopy, in which a tube probes the interior of the belly for out-of-place uterine tissue, is understood as the only definitive way to determine if a patient has endo. Due to the risks it carries as a surgical procedure, it’s recommended by physicians with caution.  

The barriers to diagnosing endometriosis are also incredibly social. Up until recently — and continuing today, depending on cultural context — strong taboos around discussing reproductive issues like fertility and menstruation have discouraged women from being open about their experiences. The consequences of this include reduced knowledge on the severity of symptoms, as well as increased difficulty for professionals to construct diagnoses. Compounding this is the physicians’ response to endometriosis symptoms. Suffering extreme period pain has been normalized to the extent that many health care providers won’t investigate it further. Instead, women are told to take painkillers — as I was — and to wait it out.

Beyond this, there’s a well-recognized trend demonstrating that health care professionals take women’s pain less seriously than men’s. Experts acknowledge that women endure and declare pain more frequently and of greater intensity, but they are less likely to receive sufficient treatment for symptoms. Researchers Diane Hoffmann and Anita Tarzian of the University of Maryland found that gender bias prompts physicians to dismiss a woman’s pain, unless there is an explicit, objective reason not to. In other words, women detailing their pain are perceived as sensitive or hysterical, and are at risk of having physical ailments attributed to psychiatric conditions.

At different intersections, this difficulty is only exacerbated. Endometriosis is perceived to be a white woman’s condition, and women of colour suffer the consequences of this. “The symptoms present the same way, but the complaints that women of color bring to a provider aren’t taken as seriously sometimes, and they aren’t properly diagnosed,” Oluwafunmilola Bada, Associate Professor of Obstetrics and Gynecology at Howard University, told SELF Magazine.

Even if a diagnosis is obtained, there is no real cure for the condition as surgeries to remove the uterus and ovaries aren’t always effective, and pain can flare back up when temporary treatments are halted. Living with endometriosis is a daily affair that is drawn out over years. As sufferer and advocate Lara Parker put it, “chronic pain means chronic.” Living with a long-term condition, especially one that is so misunderstood, can bleed into all aspects of an individual’s life, with implications for their mental health, family, relationships, and career.

Endometriosis is slowly gaining ground in terms of awareness, which will hopefully prompt improvements in the way that it is addressed. Celebrities like Halsey and Tia Mowry have been vocal about their experiences; Girls Lena Dunham has also been transparent about her diagnosis. As a result, it’s not as obscure as it was 10 years ago. However, the persisting difficulty that women face when trying to have their pain understood, their health conditions recognized, and their symptoms managed can be incredibly damaging. It compromises their quality of life as well as the integrity of the health care system, which professes to serve everyone equally but far to go before this becomes evident in practice.

Menstruation frustrations

A cycle of quiet suffering on campus

Menstruation frustrations

Several days ago, I was having a conversation with my friends about the worst bathrooms we have seen so far at U of T, and while some of the characteristics that came up were expected — such as laughably-bad lighting, poor design, and lack of hygiene — a recurring theme also emerged: most of the bathrooms mentioned were not designed with menstruation in mind.

Whether it is dim lighting or cramped space, these spaces are already frustrating on a regular day, but when it comes time to deal with all of your period blood, the ridiculousness of the situation becomes even more evident. Since these unpleasant and tough situations only come about once a month, it seems much easier to just forget about those problems entirely.

This perspective is often shared by those who don’t see the value in investing in better bathrooms or creating better policies. In high school, my friends and I would have issues keeping up with school events and exams while dealing with our periods, but we were advised to “just deal with it,” since the ‘issue’ would go away in a few days and then we could forget about the problems until next month. But the real systemic issues never go away: somebody is always going to be menstruating, and members of the community will continue experiencing the same problems day by day unless the problems are addressed.

Although the taboo surrounding menstruation has lessened quite a bit over the last few decades and conversations surrounding it have become quite normalized, important changes have yet to be made with how the topic is handled. One would expect U of T to be better at this than other institutions, given its work on inclusion and its position as a global leader, and yet it still fails to have the most important conversations surrounding menstruation and provide appropriate avenues for support.

On a small scale, it’s generally much easier to have conversations about menstruation face to face, but even that approach has its own difficulties. How comfortable can it be to approach an old, male professor to talk about your bodily functions? In any case, these face-to-face conversations are nearly impossible at U of T, where classes are being taught to over 90,000 students every semester, making staff members even harder to communicate with and access.

But why are we even having these conversations? Why can’t we “just deal with it” and move on with our lives? Shouldn’t we be used to it by now? Can’t we just go to the doctor and get our problems permanently fixed? Why is menstruation such a big deal?

Well, periods can range from merely irritating to debilitating, and they don’t stay the same from month to month, much less throughout one’s lifetime. Along with a loss of blood, accompanying symptoms include headaches, exhaustion, cramps, nausea, light-headedness, and even fainting. There are several options to deal with these effects, such as birth control pills or painkillers, but the fact of the matter is that for many people, menstruation is difficult to endure, and no matter how many times they experience it, there’s still no guarantee that they’ll be prepared.

What are the systemic challenges that can be expected for someone getting their period at U of T? Let’s say that you go to the bathroom half an hour before the beginning of a midterm, and you’ve been feeling a bit off all day. You realize that you’ve gotten your period early and you’re completely unprepared: you don’t have anything to stop the flow and you’re freaking out in your stall. While U of T bathrooms have sanitary waste disposals for period products, some bathrooms don’t have operable pad and tampon dispensers, with some appearing to have been around since the dawn of time.

So, instead, you can ask a friend, or even a stranger, if they happen to be carrying a tampon or a pad. But this isn’t high school; your friends might be in a class on the opposite side of campus or there might not be anyone around. If you want to buy period products, you’ll likely have to go to the nearest drugstore, since they’re not nearly as easy to get on campus as free condoms and lube. As a last resort, you may be left relying on paper-thin toilet paper, an option that is used far too often, even in today’s day and age.

Now that you’ve successfully staunched the flow, you start feeling those dreaded cramps, and nausea on top of that too. What can you do? Perhaps you can buy some painkillers and ginger tea, but your midterm is now in 15 minutes and you know that it might take up to an hour for those cramps to go away, even with the painkillers. If you take the midterm, there’s a chance you’ll screw something up because of the pain, but there’s also no guarantee that you’ll be able to take a makeup test.

It’s generally more likely that you’ll be allowed to reschedule the test last-minute if the class is a small one, but for larger classes, you might run into trouble; some courses require valid documentation to be sent within 24 hours of a missed test. This documentation should either be the equivalent of a doctor’s note or a note from your college registrar, and missed labs require a doctor’s note. It’s easy to see why this system is flawed: doctor’s notes can be bought and faked; some doctors give notes too easily, while others never give them; and ultimately, pain is difficult to prove in any circumstance.

It’s challenging to figure out how the rules should be fixed, since a balance should be maintained between not encouraging people to lie about their pain, while also helping those who really are experiencing it. In terms of solving these bathroom problems, all bathrooms on campus should meet certain standards. All stalls should contain proper sanitary waste disposal, and functioning pad and tampon dispensers. For such a necessary part of daily life, menstruation products are quite hard to find, and U of T certainly isn’t making it any easier to get them where they’re most needed.

How should we start addressing these concerns? First, we should acknowledge the problems and ask students and staff what changes they want to see across campus. Then, the bathrooms on campus should be improved, starting with those in colleges and buildings with higher foot traffic. Course and testing policies concerning sudden illness should be updated, and U of T should explicitly outline what measures should be taken when conflicts arise between schooling and personal health issues, such as those brought about by menstruation.

It’s important to realize that most of the people dealing with these issues are female, and failing to address them would mean giving half the students at U of T, around 45,000, a systemic disadvantage. The issues aren’t going to go away by themselves, and it’s incredibly easy to forget about them unless it happens to you. Once you start noticing flaws in U of T’s system, though, it’s impossible to stop, and every time you count yourself lucky for not being stuck bleeding in that dark, cramped bathroom in the basement, you’re neglecting to realize that your inaction only means that someone else will experience it instead. 

Bloody politik

The promise and power of period tracking apps

Bloody politik

men·stru·a·tion

noun

the process in a woman or person with a vagina of discharging blood and other materials from the lining of the uterus at intervals of about one lunar month from puberty until menopause, except during pregnancy.

I started using the period tracker Clue about a year ago when my cycle became irregular and I had no idea what the hell was going on with my body.

For those of you who may be wondering what exactly a period tracker is and why anyone would want to use one, well, this one’s for you. And to those of you who are considering clicking away from this article because the word ‘menstruation’ makes you uncomfortable, well, surprise! We bleed.

Period tracking apps are exactly what they sound like: They are apps that use inputted information about your cycle such as pain levels, bleeding, emotions, sleep, sexual activity or lack thereof, energy, mental health, and more to keep track of upcoming periods, evaluate menstrual health, and basically let you know why you’re suddenly craving a tub of Ben & Jerry’s Vanilla Caramel Fudge at 2:30 in the afternoon on a Wednesday.

Out of the abundance of apps that can be found in the app store, I chose Clue because of the simplicity of its layout, its high ratings, and the lack of stereotypical pink flowery designs that are found on most tracking apps.

After a few cycles passed, I found that Clue could predict my period almost to the day. This may not be the case for everyone some periods are more irregular than others but trackers are a great way of getting more in touch with your body and what’s going on inside of it.

 

First, period tracking apps are an excellent way to help identify how your menstrual cycle affects and is affected by changes to your body, from medical treatments like hormone replacement therapy to emotional states including dysphoria.

But that’s not all. Moving outside of our own bodies, Clue has a feature where you can share your cycle and symptoms with people in your contacts. At first, I wondered why anyone would want to share such personal information. However, I’ve found that it’s features like this and the apps that feature them that are changing how we see menstruation and how it affects our bodies.

Simply telling someone, ‘Hey, this is what’s going on in my body right now’ normalizes periods and sparks conversations about them.

Often, people assume that only women use period tracking apps. Specifically, cisgender women women who have always identified as such and were born with the genitalia to match. Of course, this makes sense considering the fact that we’ve been raised to think that only women have vaginas and only men have penises and those are the only two options available. But, realistically, the world isn’t so binary.

As a cis woman, I obviously can’t speak to the individual struggles that trans and/or non-binary people experience when it comes to periods, but I have learnt that just acknowledging the fact that it’s not just cis women who get periods changes the way we see menstruation. It helps to deconstruct the idea that menstruation is limited to one type of body.

However, in addition to the types of bodies that are affected by menstruation, it’s important to discuss the North Atlantic centrism of these kinds of technologies and apps such as Clue.

These apps are excellent resources for privileged individuals, but what about the millions of people across the globe who don’t even have access to basic menstrual products?

We can applaud these apps and the people making them for opening discourse, but we also need to start conversations surrounding the accessibility of menstrual hygiene products for everyone.

We need to demand more.

We also need to be critical of the apps we are downloading. What are the main reasons that developers are putting these apps on the market? Do these companies actually care who uses their services and why?

Developers of these applications are capitalizing off of menstruation while much of the world still sees it as a taboo topic. We may have gotten rid of the tampon tax here, but we are still paying for menstrual products, as if bleeding from our vaginas once a month is some kind of luxury.

We have to pay to keep our bodies clean and download apps to keep track of our bodies. Money is still being made off of bodies that have no say in their function. Looking into the goals and priorities of the companies making these applications is just as important as talking about the people benefitting from them.

Ultimately, period tracking apps and the people making them should be focusing on advancing reproductive and menstrual health care, not restricting it to a specific group of people. Everybody and every type of body needs to have equal access to these products and services.

This, of course, may seem like an unrealistic goal to have considering all the variables that come into play, including location and means, but I hope that articles like this can start dialogue that will take us one step further in the right direction.