Endometriosis and the Nature of the “Female Disease”

Alberto Ortiz
Alberto Ortiz

By Lisbeth Leftwich, Intern 2015

Author’s note: I use the phrases “female” and “woman” throughout this article to refer to someone who experiences or has experienced menstruation, because of my linguistic need for shorthand. However, it’s important to note that not all women have uteruses, and not all those who have uteruses are women.

I didn’t understand what endometriosis was until I saw someone I love throw up so many times in one night she pulled a muscle in her stomach. Watching her go through a regular cycle of pain every month taught me a level of helplessness I had never known before. And the fact that no one around us felt comfortable talking about endometriosis only made it worse. After all, it is a disease involving menstruation — a “female” disease. And we do not talk about those.

The lack of widespread knowledge about endometriosis is illogical. It would be one thing if relatively few people suffered from this illness. That would still be tragic, but it would make more sense. But endometriosis is not rare, and it is not new. 1 in 10 women in the U.S. will battle with it at some point in their lifetimes, and 10 percent is no small chunk of our population.

Endometriosis is when the tissue lining the uterus (the endometrium) starts to grow outside the uterus, often on other nearby organs or body parts. The disease has a number of side effects, the most prominent being extreme pain during and around menstruation, as well as an increased chance of infertility. The cause of endometriosis is unknown and, although there are treatment options, there is no permanent cure. Many women find a treatment that seems to work for their specific case for a while, only to be thrown back into the cycle of pain somewhere down the road.

It’s not difficult to guess a major reason we don’t talk about endometriosis. Despite the fact that menstruation is something half the Earth’s population will experience regularly at some point, it is considered taboo to discuss it publicly. Beyond the basic knowledge of how to manage periods, we tend not to share information concerning this important and natural process.

It would be easy to shrug off this reluctance as the same distaste we feel when discussing other bodily fluids. However, when it comes to periods, there is something deeper at work. Menstruation is part of the process that the human species relies on to continue existing, yet we make it known that it should be kept shamefully private. Sexualized images of women abound on social media platforms like Instagram, but as soon as an artist posts photos exploring her experiences with menstruation, the images are immediately removed for being inappropriate.

It’s not difficult to guess why these things happen. While sexualization and objectification gives society ownership over women’s bodies, menstruation is personal and internal, no matter how you slice it. How do you control something like that, other than making it taboo to discuss? So it makes unfortunate sense that we wouldn’t talk about an illness intimately linked to menstruation, even if it affects millions of women.

The problem is, this taboo comes with consequences. It prevents us from recognizing a critical fact: Diseases like endometriosis are life-altering. People suffering from them spend a huge portion of their lives and resources treating and managing their pain. Professionally, endometriosis “accounts for a significant loss of productivity of 11 hours per woman per week.” Since there is no cure for endometriosis, these problems are constant, and start to take a mental and emotional toll.

On top of all of this, because women are discouraged from and shamed for talking about menstruation, many with endometriosis end up suffering alone. Instead of being able to find others who can relate to their experiences and give advice regarding treatment, women with endometriosis are often left trying to figure out how to live with their condition unaided.

Social media has emerged as a way for those who suffer from endometriosis to find a supportive community. Even when you are in such debilitating pain that you cannot leave your bed for several days, you can connect with others in similar positions by using the #EndoStrong, #EndoSisters, and #EndoWarriors hashtags on Twitter and Instagram.

For my loved one, finding this online community was the first time in the decade since her diagnosis she felt she could talk with people who understood what she was going through. This isolation is a major problem, and one that our culture needs to fix. These diseases affect a huge number of women — there should be more resources to help connect and support them.

But these aren’t the only resources that are lacking. Because it is such a little-talked-about disease, endometriosis is not adequately researched, despite the fact that its causes and cures are still a mystery. And why would there be research? The diseases that receive attention and funding for research are widely known and publicly discussed. When an illness is tied to menstruation the way endometriosis is, what are the chances it is going to be well publicized? How can we fund research for a disease we’re too embarrassed to talk about?

At the same time, the strange reality is that not all “female diseases” are created equal. Breast cancer research, for example, receives far more funding in the U.S. than any other type of cancer. While men can occasionally contract breast cancer, this disease overwhelmingly affects women. It is a widely discussed disease, and seems to be something that people feel comfortable talking about, despite the fact that cancer is intensely personal.

That is not to say that breast cancer doesn’t deserve this kind of attention. It is deadly and far too common, and it’s good that we are able to talk about it and fund research for treatments. But what makes it so different from other diseases supported by women?

Many people have asked this question, and too often they come up with the simplistic and infuriating answer of “People like boobs.” As much as I hate to admit it, there is something to this answer, although not in the way people often mean when they give it. Because women’s bodies, and particularly their breasts, have been so sexualized, their breasts are seen as belonging not just to themselves, but to everyone. While it’s an uncomfortable admission to make, society feels some kind of ownership and protection for women’s breasts. Breast cancer threatens this ownership.

Moreover, breast cancer is common. In fact, it is the second-leading cause of death in women. If we aren’t personally affected by breast cancer, we almost certainly know someone who was, is, or will be.

But these aren’t the only reasons breast cancer research has seen such a massive amount of funding. Much of it comes from the work activists have been doing for breast cancer awareness over the last 30 years. From the establishment of Breast Cancer Awareness Month in 1985 to the co-opting of the pink ribbon as a symbol for the disease, those working to promote breast cancer research have done so by making their cause known. They have partnered with different sports leagues to spread awareness, and they have set up walks in which people can participate to honor someone they love.

Of course, it’s worth mentioning that breast cancer awareness has turned into a corporate industrial complex over the last decade. It has become popular for companies to brand their products as supporting breast cancer awareness to make them more popular, while still pocketing the vast majority of the profits themselves. This is a big problem, but does not take away from the work activists did to raise awareness for breast cancer in the early years. These are the kinds of actions that need to be taken in order for research to be well known — and well funded.

These awareness campaigns can’t happen, though, for diseases like endometriosis. Not when we’re unable to openly talk about menstruation.

While we continue to put a stigma on this natural bodily process, we hurt those who suffer its complications. Those who experience pain ripping through their bodies on a monthly basis are left feeling completely isolated, and without the resources they need to carry on. No one deserves to feel isolated simply because people are too embarrassed to discuss what they are going through. This alone is enough of a reason to end the stigma. Until we can do that, one in 10 women will have to continue being #EndoStrong.