Underresearched and Underrepresented: Women’s Healthcare

Underresearched and Underrepresented: Women’s Healthcare

Emma Kolakowski

This article is part of the Fall 2020 Magazine Issue series. To read the full Fall 2020 issue click: here


Even in the most prosperous nations in the world, women suffer, and even die, from complications of reproductive health procedures and conditions. Medicine has advanced leaps and bounds even in the past few decades, yet treatments and research for conditions that affect exclusively women lag behind. Take endometriosis, for example: it’s a painful condition affecting an estimated 10% of all women, and yet it can’t be even diagnosed without an invasive procedure. In an advanced technological world, why are so many women-only conditions so unknown — and so untreatable? 

While “women’s healthcare” can describe how other fields, like cardiovascular medicine, intersect uniquely with female anatomies, this article focuses on the reproductive aspects of women’s health. For example, heart attacks present differently in women than they do in men, but since heart attacks affect any gender, there’s far more research on the subject than there is on conditions that affect exclusively women.   

Contraceptives

There’s one area of women’s health that appears to have advanced by leaps and bounds. Modern forms of woman-based birth control are a relatively new invention, and there’s a range of options for women who want to prevent pregnancy through something other than a condom. In fact, some birth control is now used for more than just preventing pregnancy. Since certain contraceptives work by altering hormone production, birth control is now used to treat certain health concerns. As far as neglected women’s health concerns go, birth control almost doesn’t seem like it fits the bill. It’s well-known and commonly used, sure, but some forms of birth control come with complications.

Take the IUD: it’s long-lasting and low-maintenance — in theory, a great contraceptive option. But there’s one common complaint about the T-shaped device, which is inserted into the uterus. The insertion, which is performed by a doctor, can be incredibly painful. The cervix has to be sterilized and stabilized (the cervix and uterus must be aligned for proper insertion). This part of the process isn’t exactly enjoyable, but it’s not the most painful part. After the cervix is measured, the IUD is inserted, which is when most patients experience pain. It’s more than a bit of discomfort, like the pinch of a shot — the pain is so severe that it’s not uncommon for the patient to faint. 

The solution? Dr. Jenna Birch, a gynecologist interviewed by Huffpost, suggested taking Ibuprofen before coming in. Some doctors will use a local anesthesia, but a study by obstetrician-gynecologist (OB-GYN) Dr. Anne Davis, published in Contraception in 2013, found that numbing medications such as lidocaine didn’t relieve pain any more than the placebo.

Unfortunately for IUD users, the problems don’t end there. Women with IUDs may experience the typical symptoms of premenstrual syndrome (PMS). Also reported as a side effect? Ovarian cysts. The maker of Kyleena, a common IUD, reports that a whopping 22% of its users experience these cysts, which are essentially sacs that form on the surface of the ovary.  Kyleena isn’t the only one — other common IUDs, Liletta, Mirena and Skyla, have the same side effect. All except Mirena also warn that there may be an increase for ectopic pregnancy. An ectopic pregnancy, where the egg implants outside the womb, doesn’t represent just a failure of the IUD, according to Medical News Today. It’s a medical emergency and can be life threatening. Thankfully, these painful and potentially dangerous side effects won’t happen to every IUD user, but every user will have to go through a painful insertion.

The relatively new IUD isn’t the only form of birth control that comes with concerning potential side effects. “The pill,” arguably the best-known method of birth control, has been around since 1960. Despite being on the market for 60 years, it still has many of the same side effects as when it first hit the market. Common side effects of taking an oral contraceptive range from nausea, migraines, mood swings, reduced libido and weight gain. Though these more common side effects are certainly uncomfortable, some of the rarer ones pose real health concerns. In rare cases, the pill can cause blood clots and certain cardiovascular conditions. It can even affect the vision of those who wear contact lenses by thickening membranes in the eye. While these side effects are thankfully less common, it’s still shocking how many women who take birth control experience the more “mild” side effects to a disruptive extent. 

So what about birth control for men? The IUD and oral contraceptives are only two of the many birth control options available for women. Why, now that birth control has been around for sixty years, do we not have as many options for men? Condoms are well-known as a temporary form of contraceptive, but why aren’t there longer-lasting contraceptives for men? Research into a new form of male contraception garnered global attention in 2016 when the study was ended early due to side effects among the male participants. More than a few newspapers were quick to point out the irony — women’s birth control is obviously rife with negative side effects, and yet is used by millions every day. Obviously, side effects in the male birth control trial are a reason for concern, but it’s telling that it was enough to halt the research on men, while women are expected to take the side effects of birth control in stride. 

Side effects of these contraceptives don’t affect every single user. There are some lucky patients who experience none at all. But the side effects that can be severe are far too common, like the 22% of women that Kyleena admits experience ovarian cysts. Condoms aren’t foolproof, and many women need birth control for reasons beyond preventing pregnancy. The hormone-disrupting ability of these contraceptives means that they’re used to treat everything from acne to endometriosis. For some reason, it’s not considered a problem that medications used by millions come with disruptive side effects and require painful procedures. Given how long these methods of birth control have been around, it’s shocking that there hasn’t been extensive research and improvement on the pain and inconvenience that come with them. It’s assumed that women who want to use contraceptives will just grin and bear it. 

Women-Exclusive Ongoing Conditions

A number of the health conditions that affect exclusively women are lifelong. These ongoing conditions are prime examples of where women’s healthcare suffers from lack of conversation. For example, an approximated 10% of all women suffer from endometriosis, but despite the commonality of the painful condition, it’s incredibly difficult to even get a diagnosis.

Endometriosis occurs when tissue that lines the interior of the uterus, called endometrium, grows outside of the uterus, according to the Mayo Clinic. Women with endometriosis experience pain in the pelvic region and back not caused by their menstrual cycle. The condition can also result in infertility. Endometriosis can currently only be diagnosed through an invasive surgery, and the University of Michigan Health Team reports that it can take a decade or more to receive a diagnosis. The treatment for endometriosis is as inadequate as the methods for diagnosis. The supposedly ideal treatment is another invasive surgery, where the extraneous tissue is cut away from the other organs that it has grown on. Given how long it takes to receive a diagnosis, it’s likely that endometriosis is even more common than thought. But even if it does affect only one out of every ten women, that makes it common enough that screening for the disease should be far easier.    

It’s not all bad news: there’s ongoing research into a less invasive way to diagnose endometriosis by testing menstrual blood cells, according to Healthline, a medical news website. In 2018, the FDA approved an oral treatment for endometriosis. These advancements are certainly a step in the right direction, but more research is needed. The oral medication works by triggering an early menopause, which comes with health complications of its own. 

Dr. Sawsan Al-Sanie is part of a group of physicians that published a study in 2019 calling attention to the lack of research and treatment options for endometriosis. Al-Sanie,when interviewed by the U of M Health Team, said that the problem with existing treatments for endometriosis is that they don’t always work. Citing medical funding allocations published by the National Institute of Health, Al-Sanie and other researchers described the condition as “underfunded and under researched” in the American Journal of Obstetricians and Gynecologists. 

Another major stumbling block in the fight for better endometriosis care is social stigma. It’s assumed that women have to have pain associated with their menstruation, and that they need to just suffer through it the way women have for years, maybe with the help of an Ibuprofen. Women are routinely and systematically discounted when they tell medical professionals that they are in pain. It seems there’s a societal assumption that women should just stop whining and suffer through it, just like they do when menstruating. That’s part of why it takes so many endometriosis sufferers so long to receive a diagnosis. Endometriosis patients, like all women, have been taught that abdominal pain is normal, and it’s hard to judge how much menstruation is “supposed” to hurt. 

Endometriosis is just one of many painful women’s health conditions that suffers from lack of research and understanding. Polycystic Ovary Syndrome(PCOS), Turner Syndrome, and others often get swept under the rug since they are capable of affecting “only” half the population. Women’s incurable health conditions suffer from lack of research funding. Even the better researched and very common conditions like endometriosis go underdiagnosed due to doctoral tendency to dismiss a woman’s reports of pain. Thankfully, a few studies into endometriosis treatment are now ongoing, as more and more women work to bring attention to it and other female-specific conditions, but there’s still a long way to go. 

Childbirth

Childbirth may well be the most advanced subset of women’s medicine. We’ve known about it for far longer than we’ve known about most other women’s health issues, after all. There are countless books on the subject, specialized medical professionals, prenatal classes and tutorials on how to breathe through contractions. However, it’s important to remember that there are barriers to accessing specialized childbirth preparations. Not every mom has the time to go to classes, or the money to spend on books. Especially in developing countries, these resources aren’t as common as they should be. And even in developed nations like the US, there are still systematic inequalities affecting birth. 

In the US, a country with some of the most advanced medical facilities in the world, the maternal mortality rate is alarming. According to new data published by the CDC in January 2020, America’s maternal mortality rate is 17.4 maternal deaths per 100,000 live births. That’s a large statistic, considering the maternal mortality rates for other wealthy, developed countries. For comparison, Germany’s last surveyed maternal mortality rate, in 2017, was seven deaths per 100,000 births. Despite being considered a major world power, the US ranks 55th worldwide in maternal mortality. 

The CDC’s 2020 maternal mortality study also provided the most recent data on the concerning trend of racially-based inequities in childbirth complications. Women of color, and specifically African American women, are much more likely to suffer complications or die during childbirth than white mothers. The study published in 2020 showed that African American women are more than two and a half times as likely to die than white women, with a maternal mortality rate of 37.1 compared to 14.7. 

Childbirth itself isn’t the only part of having a child that’s been unnecessarily complicated by lack of research. There’s a newly formed consensus that the increased estrogen levels experienced during childbirth can cause gallbladder issues, but there’s a dearth of women who report being ignored when they complain of abdominal pains post-birth. An anonymous Atlantic Monthly reader submitted her experience with the issue, saying that she didn’t even receive the necessary abdominal ultrasound until her third time visiting the hospital in the week after her birth. Once again, a woman in abdominal pain was dismissed as melodramatic, despite the urgency of her medical situation. 

Given how many women have gallbladder issues post-pregnancy, why don’t any of the examining doctors think to check for them? The same reason that the maternal mortality rate is so high: lack of research and lack of discussion and education based around what little research there is. Until there is a widespread conversation on improvements in childbirth and postpartum care, unnecessary deaths will continue. And as research hopefully advances in the coming years, the racial differences in maternal mortality can be better understood and one day eliminated.

Sidebar

No conversation about the effect of gender on health care would be complete without mentioning the experiences of those who are transgender or otherwise gender non-conforming(GNC). Health care is, in general, more difficult for those with non-traditional gender expressions, but the field of women’s health care is especially difficult due to its focus on gender. 

Transitional surgeries can be prohibitively expensive, so a trans man may still have to seek health care for a reproductive system that does not match his gender. That’s already a potentially uncomfortable or upsetting process, and when medical experts are insensitive, it’s even more difficult. In an NPR poll, 22% of transgender individuals surveyed said that they had avoided seeking medical care for fear of discrimination. 

Planned Parenthood is designed to provide gender-affirming health care, but the organization’s efforts are often hindered in conservative states. Some states, like North Dakota, don’t have a Planned Parenthood office, and others have only one in the state, meaning that a several-hour-long road trip would be necessary to get an appointment with a professional who has been trained to understand the unique concerns and needs of trans and GNC patients. As research in women’s health advances, it’s got to consider the needs of gender nonconformant people. 

Conclusion

There’s an assumption that pain is the price you pay for womanhood, stemming from the thought that menstruation is just something you live with. These standards, passed down from generations of women, make us our own worst enemy when it comes to acknowledging pain. Just because our grandmothers suffered doesn’t mean we should. As the progress of our world races forward, there should be corresponding advancements in the ways that health conditions unique to women are diagnosed, treated and eventually cured. 

It’s not just menstruation — it’s the pain of lifelong illnesses, childbirths, contraceptives’ side effects. These subsets of healthcare, exclusive to women, often fly under the radar when it’s time to allocate research funding. But when women raise complaints about the pain these things cause, they’re considered melodramatic. Scientific advancement research isn’t the only thing that’s negatively affected by the lack of interest in women’s health. Public knowledge about the details of women-exclusive health problems is limited, and this often results in women unnecessarily suffering when they don’t realize that they have a serious health problem. When women do seek medical help, they risk being dismissed as overly worried or psychosomatic, and important health concerns can pass under the radar. With more interest and funding in women’s health research — and increased public awareness about the many real reasons for women’s pain — maybe the inequities in women’s health care can be healed.


Emma Kolakowski is a sophomore double-major in Theater and Professional and Public Writing, whose love for literature is only eclipsed by her love of ramen. Emma’s writing and editing interests include literature, art, and most of all politics, which is why she compulsively sits and refreshes the CNN live updates page during class. She loves playing any atypical sport, including fencing and rugby. Visit @emma_koala_ on Instagram for more.