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Birth Control Pills Are Keeping Me Alive (Literally): My Personal Perspective On Tomorrow’s Supreme Court Case

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“Birth control is the first important step a woman must take toward the goal of her freedom. It is the first step she must take to be man’s equal. It is the first step they must both take toward human emancipation.”

MARGARET SANGER, “Morality and Birth Control,” Birth Control Review, Feb-Mar., 1918

If you read PublicHealthWatch on a regular basis, you know by now that I have been covering the upcoming Supreme Court case involving the Affordable Care Act’s contraception mandate. While most of these articles stick to presenting the facts on birth control, the legality of the mandate, and the unsound reasoning of the argument against the mandate, today’s article is going to be more personal. First, though, I want to emphasize why this case matters so much for women and remind everyone of the critical role of birth control in all areas of women’s lives.

Birth Control Is Not Just A Women’s Issue: It’s A Human Right

Birth-Control-We-All-Benefit-Logo-blue copyAccess 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. By delaying and spacing out childbearing, a woman increases her chances  of finishing school and finding work that will provide a viable income. Over the past century, efforts to increase access to birth control have improved the social and economic role of women in American society and contributed significantly to women’s sociopolitical participation and self-determination.  When women don’t have access to affordable birth control, their economic situation suffers, hurting not only them and their families but the financial health of our nation.

Birth control and other modern advancements in family planning have also contributed to the better health of infants, children, and women. 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. In other words, only 42% of women who take birth control pills use them exclusively for 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 my life depends on it, I’m not being dramatic — without birth control pills, I could be dead right now.

Here’s my story.

When Birth Control Is More Than Birth Control


Birth_Control_Pills

I first started taking birth control pills as a senior 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, so I guess you could say I was very delayed!) 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 have always been a very active person; I started doing long-distance running when I was just 12-years-old, and it’s actually quite common for runners to suffer from menstrual irregularities.

What happened next, though, was anything but common.

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, and the students were enjoying the humor that my colleague and I shared. Twenty minutes into class, I started feeling a little bit lightheaded and decided to sit in a chair behind the large desk at the front of the room. Several minutes went by, and the dizziness became more severe. I remember looking at the ground beneath me and, slightly disoriented, seeing blood running off my chair into a dark red puddle expanding across the floor.

Confused and frightened — and starting to black out — I interrupted my colleague and motioned for him to come over. All I remember saying was, “get them out,” meaning the students, and then seeing his horrified face when he saw the blood.

My memories of this day are blurry, as I drifted in and out of consciousness from losing so much blood. I know one of my students stayed behind to help. I know my colleague was by my side, trying to figure out what the hell was going on. I know someone put me on the floor and elevated my feet. Someone called 9-1-1.

I do remember looking around and seeing blood everywhere. I was losing clots of blood as large as a grapefruit — I didn’t even know that was possible. Then everything got really blurry and my vision faded to black. I was tired, fighting to stay conscious, fighting to stay alive.

I woke up in the hospital 6 hours later, having undergone surgery. 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 I lost too much more blood.

It was then that I found out I have uterine arteriovenous malformation (AVM), an extremely rare and often fatal condition that causes massive hemorrhaging due to congenital abnormalities in the vascular system –specifically, in arteries and other blood vessels. According to one extensive scientific review of uterine AVM, there have only been 73 reported cases of the condition — ever. Other studies report similar rarity.

Healthy vascular connection (top) versus the unhealthy connection caused by AVM.

Healthy vascular connection (top) versus the unhealthy connection caused by AVM.

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 AVM 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 (as I did), 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 inject a substance into the artery that acts like super-super-glue to stop the flow of blood through the damaged vascular connection.

I returned home not long after my surgery, but unfortunately that would not be the end. The embolization failed, and I suffered several more episodes of massive hemorrhaging. I underwent 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 very 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 problematic ones (and this is why, sadly, it is very rare to be able to carry a healthy pregnancy after being diagnosed with uterine AVM; while I am still fertile, it is very unlikely that I will be able to successfully keep a pregnancy). It was these new vascular connections that caused the next incidents of hemorrhaging.

Finally, I underwent a bilateral uterine arterial embolization, which reduced blood flow to my uterus and therefore dramatically reduced the flow of blood through the damaged vascular connections. I was also placed on a special type of low-estrogen birth control pill control called monophasic birth control, which 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 — it has been 6 years since I’ve had a cycle. 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. My birth control pills are the only thing standing in the way of this life-threatening condition.

Religious Freedom… Or Freedom To Discriminate?

law-and-religionBecause I have to take a specific form of birth control that only comes in one, brand-name version, it can get pretty expensive. Until recently, I was paying $60/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.

Tomorrow (Tuesday), the Supreme Court will hear arguments in a case that could jeopardize women’s access to affordable birth control and set the precedent for employers to evade accountability for workplace discrimination carried on on the basis on their personal beliefs. My purpose in writing this article is not to say that my case is any more urgent than anyone else’s, but rather to point out 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 that women use birth control are as diverse as the 99% of women who rely on contraception at some point in their lives — and the implications of the upcoming Supreme Court case could impact all of us. 

Ultimately, insurance coverage for preventative care, like contraceptive services and regular doctor’s visits, is a benefit that employees earn through the hours that they put in to their jobs. Making employees pay for the full cost of their birth control and their doctor’s visits (yup — Hobby Lobby and Conestoga Wood don’t just want to avoid covering contraception, but they also want to get out of paying for insurance plans that cover contraception education and counseling) ends up shifting more insurance costs onto them. It’s somewhat analogous to a salary cut. A salary cut that only affects women.

Further, 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. If these upcoming legal challenges are successful, that could open the door for employers to restrict their workers’ coverage for doctors’ visits that include discussion of those topics, too. It’s a slippery slope.

And it goes beyond health care. A ruling that would allow corporations to limit health care coverage based on religious beliefs opens the door for corporations to enforce other forms of discrimination.

“If the court gives the green light for employers to simply assert in this instance of contraception, to say, ‘I opt out of it,’ it’s hard to determine what the limiting principle would be,” says Marcia Greenberger, co-president of the National Women’s Law Center. “An employer [could] say, ‘Oh, wait a minute, I don’t think I should have to pay as much for a woman because women shouldn’t be in the workplace, or they’re not the breadwinners.’ When you think about the implications, it underscores how revolutionary finding for Hobby Lobby and Conestoga Wood would be.”

And let’s not forget that the same “religious freedom” argument has also been used in the past to justify racial bigotry and anti-LGBT discrimination.

Tomorrow’s hearings at the Supreme Court are thus extremely important — not only for women’s health, but for anyone who doesn’t want to be forced to conform to their employers’ religious beliefs, regardless of what those beliefs may be.

Depending on the ruling, the Supreme Court could end up giving your employer the right to use their religious beliefs to strip away your rights as an American citizen and as a human being. If you don’t know where your boss stands on religion, maybe you’d better find out.

 

If you want to learn more about the upcoming Supreme Court case, check out the articles below, where I have discussed all of the issues surrounding the case in much more detail.

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