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Fatal Pulmonary Embolism with No Warning Signs

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As a recent 23 year old college graduate, our daughter was entering into an exciting new phase in her life, when it was tragically cut short by a pulmonary embolism caused by her birth control pill.

In April 2013, Alex graduated from the University of Pittsburgh with a double major in communications and writing. At the beginning of that year she had entered into a relationship. So, during her Spring Break visit to her family home in Houston, she and her mother visited a doctor where she was prescribed Lutera for birth control. She seemed to feel well on it and never complained of any alarming symptoms to her mother or me. Following graduation she found work with an oil and gas marketing company in Pittsburgh and decided to stay up there, moving into a house with several other young women.

On the afternoon of October 30th of 2013, whilst waiting for the elevator with a co-worker, she suddenly collapsed. The co-worker called an ambulance and she was taken to St. Clair hospital, the closest facility. Her co-worker said that she was having shortness of breath, chest pain, and heart palpitations before she collapsed. During the drive there, the EMT called us in Houston and advised that our daughter had had some sort of seizure and was being taken to hospital. Her co-worker told us not to worry too much as it seemed to be an epileptic fit or similar and that she’d be fine.

About one hour after the first call we received a call from the emergency room doctor who advised that, if at all possible, we should get up to Pittsburgh STAT. By this time her boyfriend and a good friend of ours had arrived at the hospital, so we were able to get regular updates as we rushed to the airport. The main issue seemed to be that they wanted to life-flight her to the main hospital campus, but that it was proving difficult to stabilize her. A CT scan had confirmed a pulmonary embolism in her lung. We arrived in Pittsburgh approximately six-and-a-half hours after the first call, but she had died two hours before our arrival.

In talking with her boyfriend he told us that everything had been fine, although on the morning of her death she’d mentioned that her ‘butt’ felt like it had a pulled muscle. In addition, Alex had eaten dinner with our friend the night before, and had apparently mentioned that she felt tired. But there were really very few warning signs that could have alerted her or us that something was wrong leading up to her death.

This sudden loss has devastated us, forever changing our lives. It’s vital that all women who consider birth control of any sort should be aware of the risks, particularly those arising from the use of hormonal-based contraceptives. There are too many tragedies like that of Alex’s.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Sharing My Story, Feeding the Hope

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death by hormonal birth control

When I took this job—combing through the Nelson Pill Hearings, researching and writing about the risks with hormonal birth control, working on the Real Risk study—my mother said to me, “Are you sure you want to do that? Are you sure you want to dig up all that stroke stuff?”

“Mom,” I said, a little exasperated. “It’s been 10 years. I’m fine with it.” Duh was close to what I was thinking but didn’t say. The weird thing is, my mom may have been right. Okay, that’s not entirely fair. My mom WAS right. (NEWSFLASH: My mom is right sometimes!) This job has been hard, and not just because reading congressional testimony is draining and because I’m so passionate about this work. It has been hard because it has forced me, nearly every day since November, to examine what happened to me.

I had a stroke because of hormonal birth control and for a long time I believed my doctors (and much of the research I found when writing my thesis) when they said that I was special. That this sort of thing didn’t happen much. Because I thought I was an anomaly, I was able to bury my head comfortably in the sand and call that “dealing with it.”

It hit me that I had not been dealing with it when I sat in a room with Karen Langhart and the parents of four other young women who had died while using hormonal birth control. As they shared their stories, tears slid down my face. I knew I was not an anomaly. It could have easily been my mom sitting in that room and not me.

I’ve written about how important it is to share patient stories. And we’ve written about the importance of the Real Risk Study. I’ve participated in the study. I’ve written my story (all three parts of it: Part 1, Part 2, Part 3). But it has not been easy for me. Which means it has taken unfathomable courage and strength for the families who have lost their daughters. I had to face a sadness that was buried deep under a layer of “getting on with life.” But for these families, the sadness isn’t buried because there is no “getting on with life.” It’s right there, out in the open, raw and exposed. Their lives will never look remotely the same.

When we publish an article about a health crisis or a death related to hormonal birth control it is not because we are alarmists. It is not because we are whiny or dwelling in the past. It is because this work is important. This study is important. I was not an anomaly. The young ladies who were killed by hormonal birth control are not anomalies. They are daughters, wives, sisters. They could be you or someone you love. We share because we are not alone. We are a group of survivors and advocates.

One of the most amazing things that has happened to me from taking this job is that, despite the challenges, it has helped give meaning to what happened to me. I’ve met and connected with amazing people. While much of it has been cloaked in sadness, the thing that shines even brighter in these interactions is hope. And hope is healing. By sharing my story and participating in this research, I am feeding that hope.

It is my wish that you will help feed that hope, too. If you are a survivor of a blood clot or a family member of someone killed by a blood clot and you have been hesitant to participate, now is the time. If you aren’t, I guarantee that you know someone (a friend or relative or a friend of a friend) who has been affected by a blood clot while on hormonal birth control. Now is the time to share this link. Because there is hope in sharing. And healing in hope.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Risk Communication and Hormonal Contraceptives

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birth control pill risk label

When it comes to the dangers associated with hormonal contraceptives, how is risk communicated to women? Back in the 1960s when the pill first came out, only the doctors and pharmacists received the information pamphlet included with birth control pills. The burden was on them to decide what information to share with women and what information to omit. This was a central theme of the 1970 Nelson Pill Hearings. What are the risks of the birth control pill and how do we inform women of these risks? Here is testimony from several experts about the issue of informed consent.

Dr. Hugh Davis (page 5928): “In many clinics, the pill has been served up as if it were no more hazardous than chewing gum. The colorful brochures, movies, and pamphlets which are used to instruct women about the pill say next to nothing about possible serious complications. The same can be said for the veritable flood of articles in popular magazines and books which have convinced many women that there are few satisfactory alternatives to these steroids and that careful studies have proved there is little or no risk to life or health in the pill… It can be argued that the risk benefit ratio of the oral contraceptive justifies their use under certain circumstances, but it cannot be argued that such a powerful medication should be administered without the fully informed consent of each woman.”

Dr. Roy Hertz (page 6039): “My view would be that the application of these medications in their present state of knowledge constitutes a highly experimental undertaking. That the individual called upon to take these materials, particularly for prolonged period of time, should be regarded as, in effect, a volunteer for an experimental undertaking. I think she should be so informed.”

Dr. John Laragh (page 6167): “I think we have to do everything we can to simplify communication, to use education, to use techniques of repetition, to simplify the package insert. We can only go ahead in this area, and with many other powerful drugs… by full disclosure.”

With so many doctors insisting that women be informed of the risks of using hormonal birth control, we now have concise, unbiased, and easy-to-read risk information that comes with every package. Or do we?

Modern Risk Communication for Hormonal Birth Control

Because of my experience of having a stroke caused by hormonal birth control, I used my master’s thesis to investigate how drug manufacturers communicate the risks of taking birth control pills with respect to blood clots. Specifically, I was interested in determining whether the package inserts fully disclosed the risks for blood clots and whether/how women were informed of these risks by their physicians. The first part of my research assessed the risk communication, provided by the manufacturers, for three different types of hormonal birth control. This included reviewing the warning materials included with each packet of pills and determining whether the following information was included:

  • Did the information state that blood clots are a risk of taking this medication?
  • If so, did the information state that genetic disorders can increase the risk of blood clots?
  • Did the information list symptoms of a blood clot?
  • Did the information tell women with symptoms of a blood clot what to do in that situation (i.e. go to the emergency room, etc.)?

In addition to these questions, each insert was given a general overview of content, design, and language. Language and design play important roles in the understanding of risk and benefit. “Risk information typically is presented in often-ignored smaller print; as part of a large, undifferentiated block of text… or simply hidden in plain view… Even when found and read, risk information often is missing key pieces of information that consumers need to evaluate drug risks” (Davis). Unfortunately for women, this is the case with oral contraceptives.

How are Risks Communicated?

  • All of the inserts were text heavy, used extremely small font, and were designed in such a way that the paper would need to be rotated at least twice to access all of the information.
  • All three inserts had a larger portion and a smaller, perforated portion (presumably for a woman to tear off the larger section and keep the smaller) which means a woman would have to thoroughly read both sections of the inserts fully for all of the risk information (something that is unlikely due to the redundancy of much of the rest of the information).
  • Technically, each of the inserts lists all four points of information that were examined in this study, however, clotting disorders are only mentioned in the smaller sections, while symptoms of blood clots are only listed in the larger sections.
  • Each insert has statistical information about the risks involved with taking the medication but without the disclaimer that it is based on studies run by the very company who makes the medication. (Research has shown that studies funded by pharmaceutical companies that make oral contraceptives produced more favorable results than independent studies of the same medications.)

In general, the most highlighted information on any risk communication for birth control pills is a version of this:

Do not use [pill type] if you smoke and are over age 35. Smoking increases your risk of serious side effects from the Pill, which can be life-threatening, including blood clots, stroke or heart attack. This risk increases with age and number of cigarettes smoked.

I didn’t smoke and I was only 28 when I had my stroke from birth control pills. But the way this is worded leads women to believe that they are only at risk if over 35 and smoke. Which is patently false. All women who use hormonal contraception are at risk for blood clots. In fact, “the reality is that the estrogenic effects of combine hormonal contraceptives increase the risk of a potentially life threatening blood clot (venous thromboembolism or VTE) by between 400% – 700% for ALL women at any age including those that don’t smoke and those that do smoke. (Comparing Annual VTE Impact across 2nd-4th Generation CHC’s in the U.S. 2013).”

As Joe Malone points out in Five Half-truths of Hormonal Contraceptives, these types of warnings (being over 35 and a smoker) infer that if you are neither, hormonal contraceptives are perfectly safe for you. They are not. They weren’t safe for me and they weren’t safe for his daughter.

Another problem with these warnings is the conditional language stating that serious side effects “can be life-threatening.” A stroke, a heart attack, a blood clot—these things ARE life threatening. But as the research shows, conditional language like that helps give the patient confidence in the medication. After all, something like that can’t happen to me…

Would women feel as confident in their choice to use hormonal birth control if the warning accurately read: “This medication increases your risk of life-threatening blood clots by 400-700%”? Doubtful.

The Right To Know

Over 40 years ago, Dr. Edmond Kassouf testified at the Nelson Pill Hearings (pg 6121) about the information the drug companies were providing about birth control pills:

“Some of the pamphlets mislead and misinform, others are frankly dangerous, but all have one thing in common—they all seem to disparage the reader’s right to know.”

I wonder, how much has really changed?

By creating documents that are so text heavy, with dense language couched in conditional terms, in font barely large enough to read, pharmaceutical companies are clearly not designing for their audience, or any audience for that matter. But perhaps that is their intention.

 

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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yaz

Why Does Yaz Get a Pass?

In the early days of hormonal birth control, many physicians and politicians seemed extraordinarily indifferent to the side effects linked

Patients Are Not Statistics: The Case for Personal Stories in Medical Research

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Power Gained

Lucine Health Sciences and Hormones Matter have begun an important new research project to investigate the relationship between hormonal birth control and blood clots. They are surveying and interviewing women and the families of women who have suffered blood clots while using hormonal contraceptives. A big part of this study includes publishing the personal health stories of these women. (You can read my story here.) Hormones Matter has always been a place to question the status quo in healthcare and believes that one of the most powerful ways we can do that is by allowing patients to have a voice.

Patient stories, or case studies, are vital to the conversation about the safety of medications and they help drive research about health issues. I believe they are the proverbial canary in the coal mine. How else will doctors and researchers know what’s going on? Should they rely solely on the drug companies to share information that may be detrimental to their bottom line? I don’t think so, but over the years many doctors and scientists have dismissed patient stories as anecdotal and therefore not pertinent to the research conversation. They claim that the only valid forms of medical research are the double-blind placebo controlled trial or the large epidemiological investigations and nowhere is there room for the patient experience of his or her symptoms. But these studies are often cost-prohibitive or take many years (sometimes decades) to complete. What about the patients suffering now?

Case Studies Dismissed in Hormonal Birth Control Research

In my research involving birth control safety and the politics and policies surrounding hormonal birth control, the disregard for patient experience, let me rephrase that, human experience, is striking and entrenched. Even back in 1970 at the Nelson Pill Hearings, Dr. Joseph W. Goldzieher, one of the physicians testifying, was so adamant that case stories had no value that he impugned the entire British Medical Journal, the official publication of the British Medical Society and counterpart to the Journal of the American Medical Association. His claim was based on their willingness to publish an article about cervical cancer and the birth control pill when he felt that other journals “would turn it down as proving nothing.” Perhaps it is no coincidence that the British Medical Journal was the first to call attention to the problem of blood clots and the birth control pill. Dr. Goldzieher’s testimony is as follows (from page 6375 of the Nelson Pill Hearings).

Senator McIntyre: Does this statement, the statement that this journal—I am now referring to the British Medical Journal—this journal is noted for its lack of editorial discrimination, represent simply your own opinion, or is it based on some evidence?

Dr. Goldzieher: No, sir. It is my opinion exclusively, and it is based on the fact that this particular journal publishes large numbers of letters of an anecdotal nature, which are perhaps amusing, but are of dubious scientific merit, but which are then used for purposes which are not admissible. Having crept into the scientific literature as information—any statistician would call it anecdotal information—it then gets quoted and re-quoted. This is of questionable value to the medical community.

Senator McIntyre: Doctor, is it not true that letters to medical journals might very well be a manner and a way of detecting problems that may be occurring?

Dr. Goldzieher: I think there are better ways, Senator… This raw information should not, in my opinion, appear in a journal of this type… It should go to somebody which knows what to do with this information. Printing it in the British Medical Journal is no way to handle this kind of information.

Of course statistics are important. And of course we cannot make claims for all women based on the experience of one, or even a few, but in the case of hormonal birth control and blood clots (or really any of the side effects from hormonal contraception or other drugs), we are not talking about a few exceptional cases. Hundreds of thousands of people are harmed every year from medication adverse events. In fact, prescription pharmaceuticals are the fourth leading cause of death in the United States. How hormonal birth control contributes to that risk is unknown. We see from the testimony of doctors, scientists, and researchers that even in 1970 the drug manufacturers knew there were far more side effects with synthetic hormones than had been studied prior to their approval. Imagine what might have happened if more case studies were published instead of dismissed as anecdotal. Would that have driven more research and more awareness of risks?

Case Studies Drive Research

A doctor that testified after Dr. Goldzieher completely refuted Goldzieher’s stance on case studies and the British Medical Journal.

Dr. Philip A. Corfman said (in Nelson Pill Hearings, page 6400.):

“I believe the thromboembolism story provides a good example of what kinds of studies are needed. The story started with clinical observations, letters to the British Medical Journal, and case reports in Sweden and American literature. These observations brought this problem to the attention of medical science, but it was not for several years, five or six at least, until well-designed, carefully controlled studies were undertaken to show that there is indeed a positive relationship between the use of pills and [blood clots].”

 

“We are still in the early stage with the other problems that have been discussed, such as cancer, hypertension, and diabetes.”

Clearly, it takes patient stories to help detect these problems. We cannot afford to wait for an observable statistical jump in the mortality of young women or any group of people before we start investigating whether these medications are really safe. We really cannot trust the drug manufacturers to make this decision for us.

Pharmaceutical Companies Against Case Studies

Perhaps it is no surprise that when Senator McIntyre asks Dr. Goldzieher if he had ever worked for the drug companies, his response was, “I am a consultant at various times to various drug companies.”

So maybe it boils down to Dr. Clark’s testimony upon being asked if he would give his daughter the pill.

“There are two sensible answers to that. The first is, my daughters are both college age now and they would not do anything I told them to anyway. The second answer, I think, is that in a survey such as this, one is dealing with statistics. These have to be looked at in the light of a group of other statistics. When you come down to a question of the patient, that patient is no longer a statistic.” -Nelson Pill Hearings, page 6152.

Patients are Not Statistics

Patients are NOT simple statistics. This is why sharing personal stories is so vital and why we make that a priority at Hormones Matter. The manufacturers and many astute doctors and researchers knew over 40 years ago that hormonal contraceptives needed much more research. In 2016 we still don’t fully understand the risks for deadly blood clots and other serious side effects. Had women not been silenced then, perhaps we’d know more today; perhaps fewer women and their families would suffer the consequences of hormonal birth control related blood clots.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

 

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5 Things Not to Say to a Stroke Survivor

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Stroke

Before I had a stroke at 28 from hormonal birth control (you can read my story here), I didn’t really know what a stroke was. And I certainly didn’t understand the implications or ramifications of what it meant to have an “insult to the brain.”

I knew I had physical and mental limitations, that I needed to learn how to walk again, to put on my socks, to bathe myself. But they also told my family that I may have an entirely different personality. Can you imagine? You wake up one day, have a brain injury, and your personality is completely different? And would you be able to recognize how your own personality had changed or would it be something people would whisper about when they thought you weren’t listening? My sister must have been particularly worried about my personality. I remember one morning she had to butter my biscuit for me after I had tried unsuccessfully several times. “I’ll butter your biscuit for you for the rest of your life,” she said. “I’m just so glad you’re still in there.” At least most of me was. That is to say, I still had my struggles with who I was and who I had been. But really, who doesn’t?

The interesting thing about surviving a stroke is learning what you can and cannot do. To others, even others that are informed about brain injuries, you may look so similar to your pre-stroke self that they take for granted you are the same. But you may not be.

So as a public service announcement for Stroke Awareness Month, here is a list of 5 things not to say to a person who has had a stroke (or any brain injury).

1. “Hold this.”

The disconnect between mind and body when you have a traumatic brain injury is a constant surprise. The first time they handed me the receiver to talk on the telephone, I held it backwards. One time I put a Cheeto in my ear instead of my mouth. When my mother asked me if I wanted to put on some lipstick, I took the tube from her, put it on my lips (or near them), then put the cap back on the raised stick of lipstick, crushing it. In the ICU, when they had me brush my teeth and rinse with a paper cup of water, the nurse instructed me to spit the dirty water back in the cup. I nodded. “Of course,” I thought. Then I promptly swallowed it. One of the most surprising things, and this was long after I’d been discharged from the hospital (and if I’m being completely honest, even now sometimes), is how things get lost in my left hand. I can literally be holding my keys in my left hand and be looking around the house for them.

But it’s not just the things in my left hand. Sometimes I will stand before a trash can with a pen in one hand and a tissue in the other and tell myself, “throw away the tissue, throw away the tissue, throw away the tissue.” Then I always have to bend down and pick the pen out of the trash.

2. “Lift your leg.”

During my rehabilitation, I was a bit of a challenge for my therapists. Most stroke survivors have damage to either the right or the left side of the body. But the damage from my stroke went down both sides of my brain and consequently affected my left arm and my right leg. One of the exercises the physical therapist asked me to do was to raise my left arm while all on all fours. I did. Then he asked me to raise my right leg. I did. “Raise your right leg,” he said again. So I raised it again. “Kerry, raise your right leg,” he said, like I might not have realized he was talking to me. “Right leg. Right leg,” my mom added. “I am raising my right leg,” I said, exasperated. What is wrong with them? I wondered. I looked behind me with complete certainty that I would see my leg raised. Of course I didn’t, but I did catch an expression on my mom’s face. It was the same expression she was wearing when we played Boggle in recreational therapy and I only found a few words. It was the same expression she wore when I smashed her tube of lipstick. It was an expression that seemed to say she wasn’t quite sure who I was.

3. “Write this down.”

A day or two after I got out of ICU, my mom asked me if I thought I could still write. You would think after the sock incident, I might have had my doubts. But I’m clearly a slow learner, because I said, “Sure, I can.” She handed me a notebook and a pen. I recently found that notebook, the picture is above. (My mom would continue to lovingly document these little milestones, just like she had when I was a baby.) When I wrote that, I thought I had done a pretty good job. And considering what my brain had been through, it was amazing I could even hold a pen. But when I look at it now, it breaks my heart a little bit. I’m so lucky that I write flawlessly now. Just kidding! My writing, while mostly legible and mostly on the lines of the paper, is still a mess. Until a few weeks ago, I didn’t even realize that messing up every third word, leaving letters out, adding letters where they don’t belong—that isn’t just how everyone writes. After a highly scientific study of asking a few of my friends, it seems that’s not normal. The first paper I wrote in graduate school, I typed the words male and female as “mail” and “femail.” Every. Single. Time. Even when I would remind myself, it still came out wrong. To this day, I have trouble with homonyms but I usually catch the mistake before I send the email or publish the story. But sometimes I don’t. I hope you’ll bare with me… haha.

4. Glare at them when they park in a handicapped spot.

In fairness, glaring at someone is not saying anything to them, but so much of communication is nonverbal that I had to include it. After my stroke, they gave me a temporary handicapped decal for my car. And while I may have looked relatively normal, I assure you I was not. I couldn’t walk long distances. I found any remotely crowded place to be extremely stressful. I had to sit down halfway through a trip to the grocery store. Day-to-day things that used to be easy were difficult and frustrating. But even more frustrating were the looks that people would give me when we parked in handicapped parking. One woman glared at me in such obvious disgust as we got into our car. She waited to comment until we had closed our doors so I didn’t hear what she said, but I’m pretty sure she heard me when I rolled down my window. As my husband sped quickly out of the parking lot, I hung my head out of the car and yelled, “I had a stroke!” at the top of my lungs. Not one of my finer moments, to be sure. The lesson that remains, and one even I frequently have to remind myself of, is that you really never know what a person is going through just by looking at them.

5. “My (insert friend or relative)’s experience was much worse than yours.”

A few months after I got out of the hospital, I was at dinner with friends when a woman I had just met (a friend of a friend) was surprised to learn that I had recently had a stroke. “My grandfather just had a stroke,” she said excitedly. “But his was way worse than yours. He’s still in the hospital.” Of course, what she meant was that I looked like I was fully recovered while he was still having visible problems. And of course, she probably didn’t mean to be dismissive. But it really bothered me. I had a massive stroke. I didn’t just have blood clots in my brain (an ischemic stroke, which accounts for 87% of all strokes). I also had bleeding in my brain (a hemorrhagic stroke—a much less common and far more deadly stroke). In my mind, I had actually survived two strokes. Yes, I was extremely lucky and I know my recovery was nothing short of miraculous. But that didn’t negate what happened to me nor what I was continuing to deal with. This woman knew nothing of my struggle to get to dinner that night, nor the struggle of the months before (and certainly not of the subsequent years), yet she made a value judgment on what had happened to me based on her grandfather’s experience. As human beings, it’s natural for us to draw comparisons and to find patterns. After all, common experiences and sharing stories are the major ways we connect to one another. And when you are interacting with someone who has had a traumatic brain injury, or any health crisis, it is completely fine to ask questions. But then just try to listen.

If you’ve ever had a health crisis, and many of us have, what have people unwittingly said to you? Or have you ever put your foot in your mouth when dealing with a friend or loved one’s health crisis? I know I have! Leave your answers in the comment section below.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Announcing the Birth Control and Blood Clot Study

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Birth Control Blood Clots Study

Lucine Health Sciences and Hormones Matter are pleased to announce an important new research project to investigate the relationship between hormonal birth control and blood clots.

Women who use hormonal contraception are at higher risk of developing a blood clot. Although some risk factors are well-documented, such as a family history of blood clots, increasing age, and smoking, many women who have suffered blood clots while on hormonal contraception have none of these risk factors. We believe that a deeper understanding of additional medical and lifestyle influences is crucial to providing women with a complete picture of their personal risk for blood clots while taking hormonal birth control. The Birth Control and Blood Clots Study is multi-phased project designed to assess the breadth and depth of blood clot risks and other side effects associated with these medications.

About the Birth Control and Blood Clots Study

Who Should Participate in the Birth Control and Blood Clots Study? Any woman who has developed a blood clot while on any form of hormonal birth control should participate in the research project. This includes birth control pills, patches, rings, implants, and the Mirena and Skyla IUDs. Because of the severity of some blood clots, including death or serious disability, we allow parents, family members, or partners to take the survey for the affected individual.

How Long Does the Birth Control and Blood Clots Study Take?  This phase of the study involves three parts, an online survey, a participant-submitted health story and an interview with a research associate. The survey portion takes approximately 15-20 minutes to complete. Depending upon one’s comfort with writing, the story portion may take up to few hours. The story portion can be completed at your leisure, however, and may be submitted separately. The interview will take approximately 20 t0 30 minutes.

Is The Study Confidential? Yes, your personal and medical information from the survey will be kept confidential and only study researchers will have access to it. However, unlike our previous studies, this project involves sharing a personal health story in addition to taking a survey. This story will be published on Hormones Matter (the publication can be anonymous if you prefer).  The story of your blood clot experience will serve to inform other women about the risks of blood clots and provide clues for future research.

How Will the Data be Used? The results will be published on Hormones Matter and in open access medical journals in order to inform future research and women’s health decision-making.

Who is Conducting this Research? Researchers from Lucine Health Sciences, the parent company of Hormones Matter. For more information on Lucine, click here.

Take the Birth Control and Blood Clots Study Now

For more details and to take the study click here: Birth Control and Blood Clots Study

Share and Follow

If you know someone who has suffered from a hormonal birth control-induced blood clot, please share this post with them. If you’d like to follow the progress of the study, research about hormonal birth control and/or discuss your experiences with others, follow the study on Facebook and Twitter.

Facebook: Birth Control and Blood Clots

Twitter: @BloodClotStudy

Questions

If you have any questions, please contact us by clicking here.

 

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Being a Feminist: Hormonal Birth Control Not Required

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Women Unite

Before I get further into dissecting the Nelson Pill Hearings I want to pause and talk about feminism and my intent for this project. The history of the birth control pill and the history of feminism are closely tied, because, of course, if women can control when and/or whether they have children, they have power over their own lives. First-wave feminists knew this. It was Margaret Sanger after all who coined the term “birth control” and conceived (pardon the pun) the idea of the pill in the first place. And so it’s no surprise that the release of the birth control pill in 1960 ushered in the second wave of feminism.

Somewhere, somehow, many people confused the right to choose with blind acceptance of hormonal birth control as “freedom.” These may be the same people who liken questioning the government with being unpatriotic. I suggest that in a democracy it is our most patriotic duty to scrutinize whether our government is acting in the best interest of its people. Likewise, as feminists it is our duty to scrutinize what may or may not be serving women.

The F Words – Feminism and Freedom

Many people believe that having unlimited access to every kind of birth control is the only way to be a feminist and therefore speaking out against the pill or other hormonal birth control is anti-women. Let us consider for a moment the types of birth control that are encouraged, advertised, and prescribed, and with these medications, whose body is being affected? Who will pay if these methods fail? Who has to deal with the side effects? As someone who suffered a stroke while on the birth control pill, I am keenly aware of the price that comes with this “freedom.”

Anti-feminists like to write a lot of articles about how women want to have it all—as if everyone doesn’t want to have it all. That’s not a feminist concept, that’s an American ideal. So, yes, as an American I want to have it all. I want birth control that doesn’t come with the risk of blood clots. I want birth control that isn’t going to kill me, make me fat, give me acne, create mood swings, or lower my libido. Why would I want all the freedom to have sex without getting pregnant with none of the desire to actually have sex?

Why is Birth Control the Sole Responsibility of Women?

Which brings us to the question—where is the pill for men? Still being tested? We hear about this birth control for men every few years, but it has yet to materialize. Is that because it’s being more thoroughly tested than any hormonal birth control they have ever released for women? The original birth control pill was tested on poor women in Puerto Rico who were not even informed that they were part of a study. This article cannot even begin to explore how the fertility of poor and minority women has been systematically targeted and abused in the name of limiting population growth. That’s a whole other topic. And I’ll be explaining the Puerto Rican trials more in future articles but it is important to note that there were only two years between when the research in Puerto Rico began and the birth control pill was approved for use in the United States. Yet every article about birth control for men suggests that many more years of study are required before we’ll every see this as a reality.

But maybe there is no pill for men yet because the side effects have been deemed unacceptable?

At the Nelson Pill Hearings, Dr. Whitelaw, a private physician and early fertility specialist, asked, “How many adult males would be willing to take an oral contraceptive faithfully if they were told that instead of a possible 50-plus adverse side reaction only one remained, that being the possible loss of sex drive and libido?” How many indeed.

But if loss of libido doesn’t scare you, how about the “50-plus adverse side reactions”? Even in 1970, hormonal birth control was linked not just to blood clots (and by extension DVT, PE, and stroke) but also to cancer, infertility, miscarriages, and even diabetes and rheumatoid arthritis. And that’s just the beginning.

However, and this is a big HOWEVER- it is not my goal to demonize the pill or any other hormonal birth control. It is not my goal to unnecessarily scare people. It’s simply my goal to educate about the dangers of these hormones that are over-prescribed and under-researched. Because I’m a feminist, I believe it is a woman’s right to choose. But that choice must be an informed one. Soon I’ll be writing more about how women are informed by looking at risk communication with these and other medicines.

Information or Patronization?

From what I’ve read so far in the hearings, every doctor who has testified has agreed that women need to be better informed of the dangers of hormonal birth control. Except one. Dr. Robert W. Kistner from the Department of Obstetrics and Gynecology Harvard Medical School said, “I don’t believe it is good medical practice with any medication to go through the list of possible complications.” And by way of explanation for this he says that if you tell a woman that headaches are a possible side effect of the birth control pill, then they will get headaches. I wonder if the same can be said for blood clots? It is also interesting to note when Dr. Kistner was asked by the committee if he had ever worked for the pharmaceutical companies, he answered, “Yes, all of them.”

Maybe it’s time for people like Dr. Kistner and Senator Bob Dole, who was also at the Nelson Pill Hearings, to stop being concerned with women’s “emotional reactions” to information about the pill. And give us the full story even though he thinks it may “confuse the women we seek to protect.” Because unlike Bob Dole, I think that women not only can handle the truth about hormonal birth control, but that they deserve it. It’s time to stop allowing corporations and agenda-driven legislation to decide what we can and cannot understand, what we do and don’t need to know about medications that affect us.

Because are women really liberated if we have taken the freedom to choose and handed it to pharmaceutical companies?

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Birth Control and Blood Clots: Where Do We Go from Here?

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Nelson Pill Hearings

When I was 28 years old, I had a massive stroke (a cerebral venous thrombosis in the sagittal sinus area) from a combination of birth control pills and a fairly common clotting disorder, Factor V Leiden. You can read my story here (Part 1, Part 2, and Part 3).

As I mentioned in a previous article, I’ve recently been contacted by an amazing group of people who are making it their mission to research and share information about the safety of hormonal birth control and other women’s health issues. In looking for answers about her daughter’s death from the Nuva-Ring, Dru West came across my thesis online and contacted me about my research. After a series of equally serendipitous events, I was then invited to be part of a research team who will further study blood clots and hormonal birth control. I’m embarking on this journey to share what I find—the good, the bad, and the ugly. I’m embarking on this journey with the hope that we can prevent what happened to me from happening to other women. I’m embarking on this journey for the countless women who lost their lives by taking these drugs for birth control, for irregular periods, for acne, or the myriad other reasons for which they have been prescribed.

My role in this project includes sharing my own story, the research from my thesis, and combing through 1500 pages of congressional testimony from the 1970 hearings about birth control pills. These documents, the Nelson Pill Hearings, have been fascinating and overwhelming. And more than anything they’ve made me want to know more. I want to find out what was known about hormonal birth control back then and how the research has or hasn’t changed since. I want to know why synthetic estrogen was banned in chickens because it caused cancer in animals at the same time it was approved for women (at 100,000 times the quantity). I also want to understand why no women were allowed to testify at these hearings (they were kicked out). And I can’t wait to share what I find with you.

Like so many issues, women’s healthcare is complicated and multi-faceted. And I plan to explore all the possible strings tied up in this knot. Starting with the research from my thesis, I’ll be writing pieces about risk communication, clotting disorders, what women really know, and what they need to know. I’ll be sharing what I find in the Nelson Pill Hearings. And I’ll be investigating other women’s health issues as they come up, or as you bring them to my attention. At times I may get angry, I may get snarky, I may get overwhelmed. But I promise I will try to be as thorough, honest, and real as I can. We may be a small community—those of us who know there are far more dangers in these drugs than the pharmaceutical companies want us to believe—but we are smart and we are strong. And when we all come together to share knowledge, we are powerful. I hope that you will join me on this journey. Unlike corporations who have no problem putting a dollar value on the life of a person, I believe that if we can save just one woman from what happened to Julia, to Brittany Malone, to Erika Langhart and so many others, then all of this work will be worth it.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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