Access to birth control is important for every woman, and over 99% of us will use contraception at some point during our lifetime. Women’s ability to control their own fertility is tremendously beneficial for all kinds of reasons. The wide availability of birth control has been an enormous benefit for countless women and their families — enabling them to support themselves financially, complete their education, and plan their families and have children when they’re ready. Over the past century, efforts to increase access to birth control have improved the social and economic standing of women in American society, advanced women’s political participation, and moved us in the direction of equality.
Birth control and other modern advancements in family planning have also contributed to major improvements in the health of women, infants, and children. In fact, birth control has had such a dramatic impact on women and families in this country that the Centers for Disease Control and Prevention (CDC) named it one of the top 10 public health achievements of the past century. More recently, the United Nations declared access to contraception a universal human right.
While a lot of women use birth control as a safe, effective method of family planning, birth control has a variety of other medical purposes. In fact, 14% of pill users — 1.5 million women — rely on birth control pills exclusively for non-contraceptive purposes, and more than half (58%) of all pill users rely on the method, at least in part, for purposes other than pregnancy prevention. Although there are a variety of non-contraceptive uses of birth control, some of the most common include relief from symptoms of severe premenstrual syndrome, regulation of menstrual cycles, treatment of acne, relief of endometriosis symptoms, prevention of ovarian cysts, and reduction of bleeding due to uterine fibroid tumors.
I am one of the 58% of women who rely on birth control due to medical necessity. And when I say that birth control saved my life, I’m not being dramatic — without birth control pills, I don’t know if I would be alive today.
Here’s my story.
I first started taking birth control pills at age 17, during the last months of my senior year in high school. I was not sexually active: my need for contraception was prompted by a physiological abnormality and associated complications. I hadn’t yet started menstruating (the average age of menarche among girls in the U.S. is 12-years-old; girls who have not started menstruating by age 15 are classified as having delayed menarche) and, with my history of medical problems including osteopenia (which can be worsened by low estrogen levels associated with delayed menarche), my doctor decided that the best option would be to take birth control pills to artificially induce menstruation.
I never had “regular” menstrual cycles, but many women struggle with irregular cycles so this was not necessarily abnormal or worrisome. I’ve always been a very physically active person — I played sports from the time I could walk, started competing as a long-distance runner when I was just 12-years-old, and was running upwards of 60 miles a week by the time I hit my sophomore year of high school. It’s actually quite common for runners to suffer from menstrual irregularities, so my doctors and I assumed nothing was out of the ordinary in my case.
We were wrong.
I worked as a graduate assistant during my first graduate degree, and part of my job was to teach health education courses to college students. One of my colleagues, another graduate student in my program, taught the same classes at the same time that I did twice a week, so sometimes we brought our students into one large room and co-taught that day’s lecture.
That was what we did on the day I almost bled to death.
Class started out fine — my colleague and I took turns lecturing, answering questions, and preparing our students for an upcoming assignment. Twenty minutes into class, I started feeling a little bit lightheaded and decided to sit in a chair behind a large desk at the front of the room. Several minutes went by, and the dizziness became more severe. My ears started ringing, and a few seconds later my eyesight went blurry. One of the last things I remember clearly was looking down and seeing blood running off the chair and into a dark red puddle that was now expanding across the floor.
Confused and frightened — and starting to black out — I interrupted my colleague and mumbled something to get him to walk towards me.
“Get them out,” I said, motioning towards the roomful of students. For a second, he thought I was joking. And then he looked down.
My memories from this point on are blurry. I know I drifted in and out of consciousness for a few minutes before losing consciousness completely. I know one of my students stayed behind to help. I know my colleague was by my side; I’ll never forget the look on his face. I know someone put me on the floor and elevated my feet. Someone called 9–1–1.
I remember looking around and seeing blood. Everywhere. Blood clots — some the size of golf balls, others as large as grapefruits — collected in dark red puddles all over the floor. (I didn’t even know that was possible.) And then my vision went black. I remember feeling so tired, and fighting so hard — to keep my eyes open, to stay conscious, to stay alive.
I woke up in the hospital, having undergone surgery and a blood transfusion. Miraculously, the doctor who saved my life that day happened to be somewhat familiar with the incredibly rare condition that almost killed me — and it was his expertise that allowed him to figure out what was going on before it was too late.
I found out that day that I have congenital uterine arteriovenous malformations (AVM), an extremely rare and often fatal condition that causes massive hemorrhaging due to abnormalities in the vascular system — specifically, in arteries and other blood vessels. According to one extensive scientific review of congenital uterine AVM, there have only been 73 reported cases of the condition — ever. Other studies report similar rarity.
Congenital AVM’s are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. They are comprised of snarled tangles of arteries and veins. Arteries carry oxygen-rich blood away from the heart to the body’s cells; veins return oxygen-depleted blood to the lungs and heart. The absence of capillaries — small blood vessels that connect arteries to veins — creates a short-cut for blood to pass directly from arteries to veins. The presence of an AVM disrupts this vital cyclical process. Essentially, while healthy blood vessels taper off to slow the flow of blood and reduce blood pressure, AVM’s cause a dangerous build-up of blood pressure at the point where arteries meet veins. Instead of gradually slowing down as the blood vessels narrow, the fast-moving blood in arteries is suddenly forced into a much smaller vessel. The connection of arteries and veins without a capillary bed creates areas of very high and low blood flow, which are fragile and may spontaneously rupture, as mine did, causing sudden and rapid hemorrhaging. The brain is the most common site of AVM’s, but they can also form in the spinal column, lungs, colon, kidney, and other places throughout the body. Once you are diagnosed with congenital AVM’s in one specific vascular connection, your risk of having another is dramatically higher (as I would soon find out).
Hysterectomy remains the treatment of choice for uterine AVM’s, but for young women who wish to preserve fertility, embolization therapy is variably successful and may allow the preservation of reproductive capacity. Given that I was unconscious, I was unable to discuss these options with my doctor, but knowing that I was only 22-years-old, he made the conservative decision to perform an arterial embolization. With AVM embolization, an interventional neuroradiologist guides a long tube called a catheter through a small incision in the femoral artery up to the location of the AVM. Through the catheter, the radiologist injects various materials, called embolic agents, into the abnormal blood vessels to reduce blood flow or completely block them. To put it plainly, they made an incision up high on in my inner thigh, stuck a tube in my femoral artery, and injected a substance that acts like super-glue to stop the flow of blood through the damaged vascular connection.
I returned home not long after my surgery, but unfortunately that wasn’t the end. The embolization failed, and I suffered repeated episodes of massive hemorrhaging over the next several months and into the next year. I underwent transfusions and embolization after each incident, and while the procedure successfully blocked the flow of blood through the embolized artery, our bodies are very good at forming new vascular connections when one is obstructed. This is usually a good thing — for example, during pregnancy the vascular system undergoes incredible adaptations, including the formation of new vascular connections and increases in the size and number of blood vessels supplying the uterus. These adaptations are necessary to support the significant increase in uterine blood flow that occurs during pregnancy. However, in my case, the congenital abnormalities in my vascular system caused problems when my body tried to create new connections — instead of forming healthy ones, I ended up with new vascular connections that were just as abnormal as the ones they were replacing (and this is why, sadly, it is very rare for someone with my condition to be able to carry a healthy pregnancy). It was these new vascular connections that caused the next incidents of hemorrhaging.
I underwent multiple bilateral uterine arterial embolizations, which reduced blood flow to my uterus and therefore dramatically reduced the flow of blood through the damaged vascular connections. I had vascular surgery to remove the knotted tangles of blood vessels. And each time, it failed. At that point, my doctors and I were discussing whether a hysterectomy would even solve the problem; they were concerned that after surgery, my body would attempt to “heal” itself by forming even more abnormal vascular structures.
As a shot in the dark, my doctor decided to put me on a special type of low-estrogen, monophasic birth control pill that delivers a consistent, very low dose of estrogen each day throughout the month. I take my birth control pills continuously, without the usual 7-day inactive period. The purpose is to control the hormone fluctuations that initiate menstruation in order to stop my menstrual cycle completely and reduce blood flow to the area. Any vascular activity in my uterus — even the seemingly normal processes that accompany menstruation — puts me at risk of suffering from massive hemorrhaging and possibly death as a result.
I haven’t had another incident since then. Birth control pills are the only thing standing in the way of this life-threatening condition.
Because I have to take a specific form of birth control that only comes in one, brand-name version, it can get pretty expensive. Until a few years ago, I was paying $60-$70/month just for the copay. The actual cost, if my insurance didn’t cover it, would be several hundred dollars each month — for the rest of my life. Thanks to the Affordable Care Act’s birth control mandate, I now pay $0 for my monthly copay.
I wrote this article not because I think my case is any more urgent than anyone else’s, but because it exemplifies a crucial point: That every woman is an individual, and her use of birth control is a decision that should be made in a doctor’s office — not dictated by her employers’ personal beliefs.
The reasons women use birth control are as diverse as the 99% of us who rely on contraception at some point in our lives — and the implications of the Trump administration’s new regulations on birth control coverage could impact all of us.
Moreover, birth control isn’t the only type of medical care that some Americans object to on religious grounds. There are some groups who are opposed to modern health services like vaccinations, blood transfusions, or mental health care. What’s stopping employers from restricting their workers’ coverage for other those services, too? It’s a slippery slope. And it even goes beyond health care. Allowing corporations to limit insurance coverage based on religious beliefs opens the door for corporations to enforce other forms of discrimination, too. In fact, the same “religious freedom” argument was used in the past to justify racial bigotry and anti-LGBT discrimination.
The Trump administration’s guidance has immediate implications for women’s health, but it’s also a harbinger of things to come for anyone who doesn’t want to be forced to conform to their employers’ religious or moral beliefs, regardless of what those beliefs may be. If you don’t know where your boss stands on these issues, now might be a good time to find out.