How the Politicization of Birth Control Disproportionately Affects Women with Endometriosis

Endometriosis is a notorious women’s health issue plagued by both physical and mental discomfort for which there is no clear cause or cure. 10% of all women are affected by this gynecological disorder that causes a woman’s endometrial tissue that is normally shed during the menstrual cycle to grow outside of the uterus. It takes anywhere between three to eleven years for most women to get an accurate diagnosis. A woman with endometriosis often finds herself in a confusing maze with limited options: surgery, birth control, pregnancy, and/or hysterectomy. This disease is most successfully diagnosed and treated through surgery— laparoscopic or otherwise— so most young women then treat their symptoms and regulate painful menstrual cycles through hormone treatment, usually a daily birth control pill or intrauterine device, or IUD. Under the Obama Administration, most costs were covered under the Affordable Care Act, which ensured widespread access to a variety of contraceptive methods, including IUDs, the most reliable forms of treatment, which can cost over $1,000 without insurance. Now, with the Trump Administration actively dismantling federal programs and requirements intended to ensure contraceptive access, America has turned back the clock on years of successful public health policy. Any further restrictions on birth control would be detrimental to the health of an already disproportionately marginalized group of women who use it as a treatment for endometriosis.

The current media and political frenzy over women’s reproductive justice, specifical access to abortion and contraceptives, is posing a dangerous threat to the larger women’s health movement. The current administration's rollbacks of the ACA were upheld by the Supreme Court in July, giving employers the ability to opt-out of birth control coverage and signaling a loss of contraceptive coverage for nearly 126,000 American workers. Jean Conti, an OB/GYN in San Francisco’s Bay Area, expressed concerns about these restrictions that are reflected in women across the country who rely on birth control for much more than preventing pregnancy. “What if [a woman] couldn’t afford that monthly cost because she was also raising her family at home and all the costs that that incurs? No one’s thinking about that when they make these rulings, and if they are, they’re just cruel.” In another case, blogger and self-described health advocate Julie Ryan, who treats her endometriosis with a hormonal IUD, wrote about her experience for HealthCentral, urging women with endometriosis to inquire with their doctor about hormone treatment via IUD. “I really wish I’d gotten an IUD earlier,” Ryan wrote. “Had I opted for this option after my earliest surgeries I might have avoided the most recent one, and I know I would have saved money and experienced a lot less pain.”

Dr. Robert N. Taylor, M.D., Ph.D., who serves as a professor of Reproductive Endocrinology and Infertility at the University of Utah Health, explained that women with endometriosis spend a sum of $10,000 annually on healthcare. Without insurance coverage through their employers, these sky-high costs disproportionately hurt low-income women who have been rejected by the American healthcare system and are often forced to suffer in silence, due to the lack of their financial capability to cover out-of-pocket costs. Endometriosis is an extremely prevalent women’s health issue that tends to go undiagnosed and untreated, and any further restrictions to birth control as a treatment for these women would only exacerbate these problems.

The issue of access for women across the country is felt deeply by not only the women themselves but also by their loved ones who have seen the physical and mental toll of endometriosis firsthand. “It scares me to death that a woman’s rights could be taken away so easily and that the birth control that so many women rely upon to help ease the chronic pain from endometriosis could be stripped away,” said the mother of a young woman with stage III endometriosis, the second-most severe stage characterized by numerous endometrial implants, endometrial cysts, and filmy adhesions— thin bands of tissue formed from scar tissue that binds a woman’s organs together in an unnatural way. “I worry about my daughter and her health and that she could be left with so few choices if the Supreme Court or the Trump administration get their way.”

With the uncertainty regarding the future of Ruth Bader Ginsburg’s Supreme Court seat, Senate Majority Leader Mitch McConnell is looking to turn the court red by fast-tracking the confirmation of Trump’s nominee Amy Coney Barrett, described by Vice’s Hannah Smothers as a “Catholic conservative who believes in ‘life from conception and is beloved by anti-abortion groups.” The ensuing panic over impending restrictions to birth control, especially IUDs, which are often hailed as the most effective at minimizing endometriosis symptoms by suppressing a woman’s menstrual cycle through continuous hormone treatment, resulted in a nationwide call for women to replace their long-acting reversible contraceptives before the Supreme Court has a chance to revoke the guarantee of coverage provided by the ACA. Kelly Murphy, a college woman who has been dealing with endometriosis for four and a half years, is wary of what the coming months could bring for women’s health care and reproductive justice. Murphy explained that during her junior and senior years of high school, she missed a total of 220 days due to debilitating pain caused by her condition. “I am so thankful I had the resources to explore the many options of birth control just to try something that will help,” she said. “I am not currently on birth control due to it not agreeing with my body, but I have tried 14 different forms of birth control to treat my endometriosis.”

Though some women who currently use birth control as a form of treatment for their endometriosis and not solely as a contraceptive will likely be able to maintain their treatment, the silent majority of women who are mis- or undiagnosed will face disproportionate hardships when it comes to restrictions on affordable birth control. If insurance-covered birth control is taken off the table in the coming years, young women— especially poor women and women of color— are destined to fall into the endless parade of doctors and medications on their years-long journey for the correct diagnosis and hormone treatment. A lack of non-invasive treatment options such as birth control pills and IUDs tends to push doctors toward more serious suggestions, such as excision surgery or even hysterectomy, which is a permanent treatment constituting the removal of the uterus. However, according to Jeff Arrington, M.D., there is “no evidence— not even a single study— that shows that just going in and removing a uterus magically makes all of the other endometriosis go away.”

Marginalized groups of women, namely women of color and poor women, have historically been taken advantage of by medical professionals, as outlined by Angela Davis in her paper “The Historical Context: Racism, Birth Control, and Reproductive Rights.” Further restrictive access to birth control would disproportionately affect the 10% of women who suffer from an understudied gynecological disorder and are already on the peripheral of the medical sphere. The percentage of women with misdiagnosed endometriosis will only grow larger and as the selection of treatment options diminishes, more women will have no other choice but to treat their disorder with irreversible procedures. These procedures, however, have not yet proven to be entirely successful in suppressing symptoms, such as the previously mentioned hysterectomy.

“I am terrified of thinking how there could be restrictions on access to birth control,” Murphy said. “Many of my friends have been able to manage their endometriosis very well with birth control, as well as my friends who have not been diagnosed with endometriosis but were able to get their cramps and bad periods under control with the use of it. It would be so unfair for the Trump Administration to take this form of treatment from women who suffer from endometriosis. It is an awful condition and people who have never lived [with] it should not be able to take away the biggest form of treatment for it.”