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Dear Pharma Supporter: Stop Excusing Birth Control Induced Blood Clots

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birth control induced blood clots

Sometimes I just want to say stop the excuses, stop the rationalizations, just stop defending the pharmaceutical industry and those giving hormonal birth control to girls and women who may actually be harmed or die. That urge to again say just stop it came up for me because of a reply to an article about Theresa Buccellato, a sixteen-year-old who died from a pulmonary embolism while using Ortho-Cept birth control. The article entitled What Everyone Needs to Know About Hormonal Birth Control, written by Theresa’s mother, explains what she hopes others will learn and what she didn’t know when a doctor prescribed birth control to her daughter. Theresa had an undiagnosed clotting disorder that medical professionals don’t test for before prescribing hormonal birth control.

The article spoke to me because my own daughter died in 2013 of a pulmonary embolism while she was using the hormonal birth control NuvaRing. She did not have a clotting disorder, but after her death I questioned the doctor who treated her in the ICU as to why my daughter developed massive bi-lateral pulmonary embolisms. It was through my persistent questioning that the doctor acknowledged that the underlying factor for a massive blood clot like the one causing my daughter’s death was hormonal birth control. So I dug into the issues of what women know or don’t know about these drugs that are prescribed so easily to them.

I am perplexed by any medical professional’s desire to “somewhat” defend the pharmaceutical industry. There can be no “somewhat” in any defense. I have read a lot of the information given to women and I assure you that it is neither clearly written nor easily understood by consumers, even if they read it.

By the time a young woman has gone to her doctor/nurse practitioner and been told that the birth control is safe, filled the prescription and taken it home, do you really think she will easily find and understand the information she needs to keep herself safe?  If she does question the drug, will she then go back to question her doctor who will probably say again “It’s safe?” Have you read the pamphlets yourself?  They are written in medical and statistical jargon that only those with medical training can have a hope of understanding, and most doctors have no clue as to how to correctly interpret the statistical data. (This is well documented in the book “Risk Savvy” by Prof. Gerd Gigerenzer, PhD.) Did he/she advise her that some women have clotting disorders and mention that increases the risk? Did her doctor tell her that a small number of women develop serious life threatening reactions and tell her the signs and symptoms she should be alert for? Or did he/she just send her to the pharmacist in hopes that someone else would explain the risk and the warning signs/symptoms or that the she will read the pamphlet and figure it out at home?

Do I want to criticize the pharmaceutical companies, the FDA, and the medical practitioners who prescribe these drugs to women? Yes, I most certainly do.

I will only focus on Ortho-Cept here because that is the drug that was prescribed for Theresa, but the same critiques can be said for almost every other combination pill, patch or ring package insert. Ortho-Cept prescribing information is here. The following is included as a “black box” warning in the most recent version (2015) of the Ortho-Cept patient information and reads as follows:

“WARNING: CARDIOVASCULAR RISK ASSOCIATED WITH SMOKING Cigarette smoking increases the risk of serious cardiovascular events from combination oral contraceptive use. This risk increases with age, particularly in women over 35 years of age, and with the number of cigarettes smoked. For this reason, combination oral contraceptives, including ORTHO-CEPT, should not be used by women who are over 35 years of age and smoke.”

This Black Box Warning statement infers that if you are a non-smoker and under the age of 35, that you should be able to safely use Ortho-Cept. It also infers that if you are a smoker, even though you need to be concerned, you don’t need to be too concerned unless you are over 35 years of age and smoke. This is misleading, I think.

The pamphlet mentions that risks associated with taking oral contraceptives increase significantly if you have a clotting disorder with no explanation of the increase rate or that you can be tested. (See page 29).

In the same 2015 Ortho-Cept prescribing insert, the risks associated with taking oral contraception aren’t listed until page 38, and the warning signs for a blood clot, stroke or heart attack aren’t given until page 41. (These may be smaller page numbers in the actual patient pamphlet, which I could not find on the internet.)

No one wants to put the real risk information up front because they believe it will scare women from using hormonal birth control. They call it fear-mongering or a “Pill Scare” but the reality is that some women will be harmed and there are other non-hormonal options for birth control. Even the hormonal, non estrogenic, IUDs have safer rates for blood clots.

Your argument about Factor V Leiden testing stated that there was a hypothetical rate of a five-fold risk in a “normal” person using birth control to be 5 in 10,000. The truth is higher, and the rate given for Desogestrel containing BCP by the European Medicines Agency is that the rate for a “normal” woman is somewhere between 9-12 per year out of 10,000 women. The FDA and U.S. physician associations have kept their range lower and do not break out the rates for the differing progestins used in hormonal birth control. So if the rate is 30 to 35 times higher for someone with Factor V Leiden then the number of women with blood clots would be between 30 and 35 women per year per 10,000 women using a hormonal birth control with Desogestrel. Do we really intend to dismiss the lives of 30 to 35 women because the other 99.7% – would not have a clot that year but may get one the next year, especially considering that the risk for blood clots increases with age? Then there is the whole other issue of what these hormones are doing to increase certain cancers or affect other organs, which no one seems to want to talk about either. They’d rather focus on the benefits of a slight decrease in a few cancers.

The reality is that approximately 2,000,000 women in the U.S. use a Desogestrel or Drospirenone (with the same risk rate as Desogestrel) birth control. This means that 1,300 to 2,280 “normal” non Factor V Leiden women using these hormones will get a blood clot (95% of 2,000,000 or 1,900,000 women). Five percent of women with factor V Leiden or 100,000 women are 30 to 35 times more likely to clot. This means approximately 300 to 350 women with Factor V Leiden will be seriously affected by hormonal birth control each year. The total for all blood clot affected women using Desogestrel or Drospirenone is between 1,700 to 2,600 per year in the U.S.  Keep in mind that we are discussing human lives, not just some unpleasant but survivable medical condition.

You also argued that the risk of blood clots during pregnancy is higher and I agree that it is, but women who are pregnant are monitored much more closely than women handed a prescription for hormonal birth control.  In addition, women are not constantly pregnant/post delivery but women on birth control are given the pill/patches/ring to use continually year after year.

Laura Femia Buccellato says that she wasn’t even aware of a blood test that would have shown her daughter had Factor V Leiden and was therefore at higher risk. The doctor didn’t tell her, it was most likely not discussed in any school class, and Laura had to find out the very worst way possible by having her daughter die. Like Laura, I would have gladly paid out of pocket for any test that would have prevented my daughter’s death. In addition, going into all the false positive analysis simply tells me that you don’t understand that a false positive would have been a good thing as it would have prevented Theresa from going on an estrogen based birth control and would have saved her life.

Laura and Theresa were not aware of the risk in general, the risk of a clotting disorder or the signs and symptoms because no one told them. No one talked about it.  That’s the point!  If Laura had known there was a test for clotting disorders, she would have had her daughter tested. If someone had talked with Laura and Theresa about signs and symptoms they might have been able to recognize the onset prior to it becoming fatal.

Women, myself included, are talking about these issues because all women need to know the short and long-term ramifications of what is being put into their bodies.

Theresa was not simply a statistic. My daughter is also not a statistic to be dismissed for the benefit of preventing pregnancy. As a friend of my husband puts it, “If the odds are a million to one and you are the one, for you that’s 100 percent.”

We can play the numbers game all we want, but the reality is that some women will be harmed, some will die and they are human beings not numbers on someone’s spreadsheet. There is risk. The truth is that these drugs have risks and women are not clearly educated/informed about those risks (in fact the risks are obfuscated or hidden) nor are they clearly taught the signs and symptoms to seek medical help and protect themselves if they are unlucky enough to be one of the women harmed.

Without the awareness of the real and potential risks of hormonal birth control induced blood clots, women are not likely to recognize or react to the early warning signals of a blood clot. As you well know, blood clots can be extremely dangerous and women and those who love them need to be fully prepared to react quickly in order to save their lives.

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.

We need your help.

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests, we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

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The Unintentional Gaslighting of Women and a Goodbye

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Gas lighting

My headache started on a Saturday night in the middle of December. I wasn’t admitted to the hospital until a Monday morning in the middle of January. From the start of my headache until my diagnosis, I saw a chiropractor, an OB-Gyn, a doctor at the walk-in clinic, three emergency room doctors, and several emergency room nurses. I was mostly dismissed by all of them. Though I was presenting with symptoms of a blood clot in my leg as well as the headache, the OB-Gyn prescribed migraine medicine and told me I had a pulled muscle (despite the fact that I hadn’t been doing anything to warrant a pulled muscle in my thigh). Even the ambulance drivers were skeptical of my symptoms. It occurred to none of them that I might have a life-threatening blood clot. By the third time I went to the emergency room (the second time in an ambulance), I was having massive seizures and the doctor on call decided to investigate my condition further.

If you’ve read any of my other articles, you probably know by now that I had a stroke at 28 from a combination of birth control pills and a genetic clotting disorder that I didn’t know I had. You may also remember that I ended up researching clotting disorders, birth control pills, and risk communication for my thesis. To make a long story short, my thesis ended up in the hands of some wonderful people who have begun a grassroots campaign to help make women aware of the dangers of hormonal birth control. Their aim was not to take choice of birth control methods from women but simply to give them a complete picture of their personal risk so that they could make the most educated decision. They asked me to look into the Nelson Pill Hearings and find out what information about these medications has been buried for nearly 50 years. I was scared and excited and overwhelmed by the job, so I knew I had to do it.

It Wasn’t Just Me

The research I found for my thesis declared that most women who will suffer blood clots will do so within the first year of using hormonal contraception. I had been on the pill for 10 years. According to research from the first phase of our study, the women surveyed who had bloods clots while on hormonal contraceptives had been using these medications for longer than a year as well. In fact, 78 percent of the women developed blood clots AFTER the first year.

Another part of the first phase of this research project was to document the stories of these women because we believe case studies provide valuable clues about the development of blood clots that are often overlooked. What we found was that many of their stories sounded like mine:

  • at best, women were misdiagnosed, sometimes several times, and sometimes fatally
  • at worst, women were dismissed completely

A nurse gave me a very strong lecture about the “tension headache” I had and how I needed to learn to manage my stress. A doctor told another study participant that she should take an ibuprofen when she actually had pulmonary embolisms. She describes the conversation:

“I explained that this was no normal pain; in fact, I had never felt anything like it. He acted very annoyed, sighed, looked off to the side, and said ‘Do you have Advil at home?’ I said that I was already taking three ibuprofen at a time, and that it didn’t really do anything for the pain. He said, ‘Just go ahead and take four and that should work.’ And then he walked away.”

For Julia West Ross the misdiagnosis of sepsis was fatal. She was actually experiencing cascades of blood clots caused by the Nuvaring, but the doctors didn’t even know to look for that. Misdiagnosis proved fatal for Annie Ammons as well. Sadly, when she complained to her doctors about the side effects she was experiencing from Yaz (a more dangerous 4th generation birth control pill), they simply put her on even more medications until she had a heart attack.

Leslie was told by a nurse practitioner that the blood she was coughing up was due to post-nasal drip. “Well, they didn’t find anything wrong with you on Friday, and I’m not going to find anything today,” the nurse told her. “But I’ll examine you anyway.” In her own words, Leslie explains:

“With an attitude like that, is it any wonder she completely misdiagnosed me? I was in tears from the pain when she asked me to take deep breaths while she listened to my chest. I was freezing cold under the a/c vent in the flimsy hospital gown they gave me. Yet, she lectured me on my huddled posture, told me my exercise regimen was inadequate, and said I had strained a muscle reaching for the telephone at work—that’s how she explained the chest pain; they were merely weakened muscles strained by reaching for the phone. The bloody cough? She couldn’t see a laceration in my throat, so it must be postnasal drip. Her strict instructions were to go home, apply moist heat, take over-the-counter pain killers, and not to return to the doctor for two weeks.”

Leslie was actually experiencing bilateral pulmonary emboli that would have killed her if she hadn’t continued to seek medical treatment.

Gaslighting

I could go on and on and on with examples of women who were dismissed, ridiculed, and continually misdiagnosed. These stories are both heartbreaking and infuriating. It has become clear to me that women are being gaslighted by the medical profession.

Gaslighting is a term used to describe manipulating someone by psychological means into questioning their own sanity. I can tell you from experience, when you are in tremendous pain and a medical professional suggests that it may be in your head, you seriously begin to question yourself. You become confused, lose faith in your own body, and stop trusting your judgment. These effects are damaging and often deadly.

Why doesn’t the medical community take women more seriously? The problem has many facets that Dr. Chandler Marrs talks about more extensively in this article. As for doctors and nurses, I don’t think they are dismissing women because they don’t care. They truly believe hormonal contraceptives are perfectly safe, that blood clots are extremely rare, and only happen to overweight smokers, not to young healthy women. Our research shows otherwise.

My work on the Nelson Pill Hearings has proven that convincing doctors that these drugs are safe has been an ongoing and completely intentional manipulation by the pharmaceutical industry. Every witness that testified on behalf on the pill had financial ties to drug companies. Those that did not profit from drug companies, like Dr. Williams, warned us of these dangers (NPH, page 6277):

“Prominent physicians long identified with pill promotion have actively advanced the cause, often with dogmatic denials of the pill’s dangers, often with exaggerated rebuttals of the danger alarms—for example, the pill is safer than pregnancy—and often with irrelevant analogies and misstatements of facts, calculated to obfuscate the issues.”

He also warned us of the reach of the pharmaceutical industry in educating our physicians (NPH, page 6220):

“the average practicing physician relies upon the drug companies for much, if not all of his information about drugs… the Physician’s Desk Reference is no more than a compendium of drug company advertising.”

Dr. Williams was not the only one concerned. Dr. Spellacy testified that (NPH, page 6437):

“One of the problems is keeping physicians informed of the tremendous expanding literature on this particular subject… I believe that relying solely on the pharmaceutical industry to inform the physicians of these things is shedding our responsibility as a medical group to keep ourselves informed.”

Among the non-pharmaceutically funded experts to testify was Dr. Victor Wynn who pointed out in his testimony (NPH, page 6302) that “it is the greatest medical dilemma that confronts us at this moment… the deep division between doctors about the safety and the advisability of the use of oral contraceptives.”

What Now?

That was in 1970. I would say that while this is still a grave medical dilemma, the division is no longer deep. Pharmaceutical company rhetoric has effectively permeated the medical profession and most doctors believe that these medications are totally safe. They are not. Yet for the drug industry, there is no benefit to explore this issue further.

Maya Angelou quote

That is why we have been doing it ourselves. Until now, I think we have been making slow but steady progress. This project was planned out in several phases that were to take place over the course of 2-3 years. Unfortunately, our funding was cut two weeks ago. We still have so much yet to explore, including data from the hundreds of women who have taken our Phase 2 survey. So, I leave you with this final article and the old chestnut: “Fool me once, shame on you. Fool me twice, shame on me.”

We know that gaslighting is happening to women, especially women suffering blood clots from hormonal contraceptives. We have documented it. We know that the pharmaceutical industry is corrupt and places profit over human life. We also know that no one is coming to save us. We have to fight this battle ourselves—or shame on us.

We need your help. If you can help, please contribute. If you know of funding available for a project like this, please contact us. We want to keep fighting. For you. For me. For all women.

Crowdfund Hormones Matter: Contribute Today!

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Birth Control and the Fifth Vital Sign

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fifth vital sign and birth control

From March 2nd to May 30th of this year, we drove 15,000 miles across the US, from New York to California, on a reproductive health education tour. We offered 60 free classes in 43 states in order to share accurate, fair information about the menstrual cycle and hormonal health. We dubbed the project The Fifth Vital Sign, because we consider the menstrual cycle to be a vital sign, as indicative of our health status as blood pressure, heart rate, respiratory rate, and temperature, with the potential to give us information about thyroid issues, endometriosis, PCOS, infections, cancers, fertility and infertility, pregnancy, miscarriage, menopause and more.

By sharing information about how our bodies work, we hope people are better equipped to make fully informed choices about their health care and contraception in particular. If we’re not aware of the benefits of ovulation and menstruation, can we really make an informed choice about hormonal birth control, which prevents ovulation and menstruation? Beyond body literacy, without knowing or being presented with all of our contraceptive options, and the risks and side effects of each, how can we make an informed decision, which is our right, about our preferred method?

Informed choice in the context of contraception is one of our favorite parts of The Fifth Vital Sign curriculum, because we realize how critical it is. We were able to initiate our project, thanks in large part to a generous donation from Informed Choice for Amerika. Karen Langhart founded the organization after her daughter, Erika, died at the age of 24 from a double pulmonary embolism as a result of the NuvaRing. From then on, it became Karen’s life’s mission to catalyze research and communications that lead to informed contraceptive decisions for women. She didn’t want anyone else to lose their lives because they didn’t know the third generation progestin in NuvaRing is associated with a higher risk of blood clotting (between 3 and 12 women using combined hormonal contraception out of out of 10,000 will develop a serious blood clot, according to the NuvaRing website).

Body Literacy and Hormonal Contraception

So, how can you make an informed choice about contraception, both hormonal and non-hormonal? We always preface this section of our class by saying: our opinions do not belong in this space, and we are here to provide you with information so that you can make the best decision for your body, which you are the authority on.

We wrote about how body literacy is an important part of making an informed choice. Our recommended resources for menstrual cycle knowledge are listed on our website, but it’s a long list! A good place to start menstrual cycle 101 is Appleseed Fertility’s blog.

Know your rights. When you are speaking with your health care provider, you have the right to say no; the right to ask more questions because you have the right to informed consent; and the right to a second opinion. Depending on where you live and your personal, financial situation, a second opinion is not always available or accessible. If this is the case, know that you can always bring a patient advocate with you to an appointment, a trusted friend or support person who can help you advocate for yourself. Bring as much information with you to the appointment as possible. We will share some of our go-to resources for contraceptive information below. Also, request a long appointment time, so that you don’t feel rushed, and write down any questions you have.

Know why you want birth control. Ask yourself what’s important to you about contraception: STI protection, price, convenience, pregnancy prevention, inconspicuousness? Making what you want and need in contraception clear to yourself will help direct your choice. If you’re considering hormonal contraception for reasons other than contra-conceiving, like acne, decreased menstrual cramps or flow, be aware that hormonal contraception is not a treatment for these issues but a temporary relief. In Women’s Bodies, Women’s Wisdom, Christine Northrup compares taking hormonal contraception for these reasons to putting a piece of duct tape over the check engine light in your car and continuing to drive. There’s still a problem under the hood, but for the moment, you’re not aware of it. These issues can be indicative of hormonal imbalances, and treatment may be found in diet and lifestyle changes. This is one of our favorite questions to ask in order to make a fully informed choice: what are the alternatives to X option? In other words, if I’ve been on the pill for six years to decrease my acne, and I’ve just come off the pill and my acne is back, what are alternative treatments? Some of our favorite diet and lifestyle resources for hormonal balance and health are Nicole Jardim’s blog, Alisa Vitti’s Flo Living and Woman Code, Lara Briden’s blog and Period Repair Manual, other members of our health care team, including abdominal massage therapists, and of course the Hormones Matter blog! Also, if your cycle is irregular, hormonal contraception won’t regulate your natural cycle; instead, the synthetic hormones will induce an artificial one. An irregular cycle may signify hormonal imbalances, or it could just be your normal.

Research and ask for a comprehensive list of contraceptives. We use a combination of Scarleteen, Bedsider, Planned Parenthood, and ACOG to learn about contraceptive options prior to speaking with our health care providers. Once you’ve narrowed down your options, we also recommend looking at the pharmaceutical companies’ websites for more information. To facilitate an effective conversation with your health care provider, ask them three main questions about each option: what are the benefits, risks, and side effects?

Know your health history and your family’s history. Communicate this information to your provider. For example, does your family have a history of blood clotting disorders? Risks of combined hormonal contraceptives include blood clots.

Make sure you understand the instructions for how to use the contraceptive. Repeat what you understand back to the health care provider in order to verify your understanding.

Be sure to know what your insurance will and won’t cover. For example, some insurance companies will cover the insertion of the implant but will not cover the cost of the removal.

 

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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Help Us Crowdsource: Birth Control and Blood Clots Study

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Birth Control Blood Clot Study

A few months ago we began the Real Risk: Birth Control and Blood Clots study. The goal is to determine the real risk of birth control induced blood clots in real women, with real lives, and complicated health histories. The project, like each of our others, relies heavily on patient stories and the patient’s (or patient’s family’s) recollection of health issues preceding the blood clot crisis. This type of self-reporting is messy, complicated, and in many cases, carries with it inherent flaws. For all the difficulties, however, I believe crowdsourced research offers the opportunity for unheralded discoveries, not just because in women’s healthcare medication safety and efficacy evidence is, and has always been, sorely lacking, but also, because I believe in women. I believe in the wisdom of their voices. For too long, women’s voices have been silenced, even where our own bodies are concerned. We aim to change that, one story and study at a time.

Not unexpectedly, however, we have been chided and our efforts blocked by more traditional researchers and patient advocacy groups (especially those sponsored by industry). It is not the kind of research ‘real’ scientists do, we are told. Real research is filtered through the lens of the medical-pharmaceutical establishment. Real research is hierarchical and highly controlled. Real research eliminates as many confounding variables as possible; variables like medication and lifestyle interactions, the very real-life variables we embrace. Most importantly, real research is sanctioned, either by academia or industry. For if it is not, it cannot be real, and it certainly is not valid, no matter the rigor.

What Constitutes Real Research?

One might surprised to find what constitutes real research. Did you know that fewer than 50% of all pharmaceutical treatments have any data supporting efficacy. Of that evidence, much could be suspect given the rampant payments from pharmaceutical and device companies to physicians and other decision-makers, plus the well-documented publishing bias and even fraud plaguing the scientific publishing industry. Real research, conducted by the real scientists and sanctioned appropriately, may be no better than flipping a coin.

In women’s healthcare, matters are even worse. Not only are evidenced-based, clinical practice guidelines nearly non-existent in gynecology (only 30% of practice guidelines based on data), and women still not included in early stage clinical trials in sufficient numbers, but regulatory agencies do not mandate analytics to determine sex-based differences in medication safety or efficacy. The result, post-market adverse events – think death and disabling injury – are more common in women than men. When superimposed upon a deep-seated medical mistrust of women’s symptoms, is it any wonder women’s healthcare is dangerous to women? Again, however, this is the real research that experts speak of so highly.

Women Are Different than Men

Digging a little deeper, it becomes abundantly clear why women’s healthcare is so dangerous for women. Most medications reach the market without having ever done the appropriate testing or analytics to distinguish why women might respond to said medications differently than men. Indeed, prior to 1998, women of childbearing potential were prohibited from participating in clinical trials. So every medication that came to market before these regulations, was not tested on women.

Even in the lab, male rodents are used about 90% of the time, because dealing with the rodent estrus cycle is considered too expensive and too complex. It was only a few years ago that the National Institutes of Health (NIH), the major funding agency for most early stage research, began mandating that female animals be used in all basic research — 2014!!! This was only after a large, media driven, public embarrassment (see Leslie Stahl’s reporting on 60 minutes).  It remains to be seen if the differences between male and female animals will be analyzed, or if, like the continuously eroding 1998 regulations, researchers have only to check a box assuring the presence of female animals in the study design.

Medications for Women Only

What about medications developed specifically for women – like hormonal birth control? Certainly, these types of medications included females?  While it is true, the development of hormonal birth control used female test subjects, the study was small, hugely flawed and completely unethical – women were forced to stay on the pill despite experiencing serious side-effects, including death by blood clot, but also, by suicide. Almost a fifth of the participants suffered serious side effects, side effects that were discussed in the Nelson Pill Hearings but ultimately dismissed and ignored. And now, decades later, we are only just beginning to revisit those side effects.

For the newer formulations of hormonal contraception, only efficacy is ever tested. Safety is largely ignored. As a result, with each change in formulation and administration route (cervical rings, IUDs, patches, etc.), the side effects appear to increase not decrease. The newer generations of birth control are several-fold more clot-inducing than their predecessors, despite marketing admonitions to the contrary.

I think it is important that hormonal contraceptives prevent pregnancy, but it is equally important that they don’t cause blood clots, stroke, heart attack or cancer. And if blood clots, stroke, heart attack or cancer are deemed acceptable risks for birth control (and I don’t think they are), then shouldn’t we know which forms are the most dangerous and which women are most at risk?

One cannot manage, what one does not measure and we don’t measure critical components of women’s health. We also don’t track adverse events or side-effects very well. Question: have you ever reported a side-effect to a doctor? Do you know if he/she reported it to the FDA, the CDC or any other adverse events registry?  Probably not, and that is the problem.

If you knew you had a 20 times higher risk of stroke or heart attack for one medication versus another, would you choose differently? I bet you would, but as medical consumers, we don’t have that information. In many cases, those data don’t exist. We’re collecting those data and we need your help. If you are a woman, please consider taking the birth control and blood clots survey. There are four arms to the survey. It is likely that you fit into one.

Who is Eligible to Participate in the Birth Control and Blood Clots Survey?

  • Women who have experienced a blood clot(s) while using hormonal birth control: take survey now
  • A family member or partner of a woman who has suffered from deadly or disabling birth control induced blood clots: take survey now
  • Women who are currently using hormonal birth control, have used hormonal birth control for at least 1 year, and have not had a blood clot: take survey now
  • Women who have never used hormonal birth control or synthetic hormones of any kind: take survey now

Chances are you know someone who has experienced ill-effects, perhaps even blood clots, from hormonal birth control. Please share on social media.

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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

The Real Risk Birth Control Study: Take Charge, Find Answers

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Birth Control Blood Clot Study

I recently read an article about how fewer women are taking birth control pills now. The article claimed:

“The reasons behind the shift are hard to pin down. Study after study has shown the pill is generally safe for most women, and is 99 per cent effective with perfect use. The pill’s safety has only improved since it was introduced in 1960. It is perceptions that are changing.”

This is completely untrue. It wasn’t safe in 1960 and it certainly isn’t any safer now. It’s also not true that study after study has shown it to be safe. At the Nelson Pill Hearings, the 1970 congressional hearings on the safety of the birth control pill, every doctor that testified agreed that more research was necessary. Yet, every modern study I have found (from research on depression, weight gain, diabetes and more) has said that even more research is necessary to make any conclusions. So in the 46 years since, we still don’t adequately understand the risks with hormonal contraceptives. Dr. Paul Meier, who testified at the hearings, spoke about the challenges of conducting said research:

“Of far greater concern to me is the failure of our governmental agencies to exercise their responsibilities in seeing to it that appropriate studies were carried out… Frankly, the required research, although important, is not especially appealing to scientists. It is not fundamental and it is not exciting. It is difficult, it is expensive, and it is fraught with the risk of attack from all sides.

Evidently, for whatever reasons, there is no sound body of scientific studies concerning these possible effects available today, a situation which I regard as scandalous.

If we proceed in the future as we have in the past, we will continue to stumble from one tentative and inadequately supported conclusion to another, always relying on data which come to hand, and which were not designed for the purpose.”

We can see that what Dr. Meier warned against is exactly what has happened. Experts testified in 1970 that the pill was linked to depression and possibly suicide. They warned that the pill should not be given to women with a history of depression. Yet, in 2004 when I was depressed after switching my brand of pill, my doctor told me that wasn’t a side effect. It wasn’t until last month that a European study on hormonal contraception said what no American study has dared. The pill is irrefutably linked to depression.

Unfortunately, depression is only ONE of the side effects of hormonal birth control. Obviously, blood clots are one of the most dangerous and why we are looking at them with this research study. Other side effects that were warned about at the Nelson Pill Hearings but for which the current research claims even more research is necessary include: diabetes, weight gain, cancer, loss of libido, urinary tract and yeast infections, lupus, infertility, hypertension. So no, studies do not actually show that “the pill is generally safe.” What studies show is that there STILL needs to be more research. Well, if they haven’t done it in the past 46 years, when are they going to do it?

As for the pill’s safety improving, just look the increased risk with newer formulations. Third and fourth generation pills have significantly higher risk for deadly blood clots.

“The problems with Yaz and its sister pills stem from drospirenone, a fourth-generation progestin.

After years of blood clot reports, the U.S. Food and Drug Administration (FDA), reviewed studies on oral contraceptives and found that an estimated 10 in 10,000 women on newer pills will experience a blood clot versus 6 in 10,000 with older pills.

Another study conducted by the French National Agency for the Safety of Drugs and Health Products (ANSM) found that birth control pills were linked to more than 2,500 cases of blood clots annually between 2000 and 2011. But third- and fourth-generation pills were responsible for twice as many deaths as earlier pills.

Two studies appeared in the British Medical Journal in 2011 and indicated newer pills were two to three times more likely to cause blood clots.”

Why would the pharmaceutical industry make newer birth control pills that are less safe? Maybe because once the patent runs out on medication they don’t make as much profit. So they change the formula and market it as a new and better pill. As history has shown though, there never seems to be enough research done before these products are approved. And women are paying the price. Dr. Ball warned of this at the Nelson Pill Hearings when he said (page 6500):

“Each time we change the dose or the chemical, you have a whole new ball game statistically, and then a long period of time has to go by for evaluation. Again, is it going to be just this unscientific, hand-out-the-pills-and-see-who-gets-sick business, which I say is wrong and which has been done. Each time there is a new pill, there is a new problem.”

Alas, that’s exactly the business that’s been taking place. Throw in the fact that doctors often dismiss the complaints from women as psychosomatic and you have a recipe for a completely misrepresented medication.

I don’t know about you but I’m tired of being a rube for the pharmaceutical industry. If we want to know what’s really going on with hormonal contraception, we’re going to have to start looking at it ourselves. We can’t wait for the government or the pharmaceutical industry to provide us with perfectly funded, unbiased research. They haven’t done that in the near 50 years since the Nelson Pill Hearings and there’s little indication they are going to start now. That’s why we’re conducting this research ourselves. We need information to help women assess what their REAL RISK is for taking a medication. Not what their doctors are telling them based on studies conducted by the pharmaceutical industry. The aim of this study is not to take away contraceptive options but to provide more accurate information about which women may have more risk for serious side effects like blood clots and which forms of hormonal contraception may be more dangerous than others.

It’s time to take charge of our health and find our own answers. That’s exactly what this research hopes to do but we need your help to do it. Please participate. And please share our study with those you know who might be willing to help. Thank you.

Take Charge: Participate in the Birth Control and Blood Clots Study

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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Heart Attack and Death While Using Yaz Birth Control Pills

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Anne-Ammons-Life-1974-2009

Our daughter Anne L. Ammons died suddenly in her sleep Nov. 7, 2009.  Her family, friends, and acquaintances were shocked. Annie was a new lawyer who had recently been admitted to the Maryland Bar, but she was known for her athleticism. While in law school she was a physical trainer, and 8 minute, 5 mile runs were the norm for her until several months before her death.

Annie’s death remained a mystery for quite a while, since it took the Maryland state medical examiner 4 months to attribute her death to a microscopic heart attack.  It took her family–her parents, sister, brother, and brother-in-law only a week to discover Annie’s silent killer—the birth control pill Yaz.  All of the physical symptoms that Annie had been suffering since March, 2009, including the final one (sudden death) were and are a strong match for side effects listed in the FDA Yaz label.

Starting on Yaz

In March, 2009, after Anne regained health insurance through her employer, the nurse practitioner at her OB/GYN office prescribed Yaz off label when Anne complained of menstrual cramps and irregular periods. Anne had taken Yaz two years before, for about a year, until she lost medical coverage.

In May, Annie tore a muscle in her back and was prescribed extra strength ibuprofen. The Yaz product monograph warns in bold letters that women taking medications, such as ibuprofen, that may increase serum potassium should have their potassium levels checked while taking Yaz, but neither the doctor nor the pharmacy noticed this. About that time Annie also began complaining of hair loss and weight gain.

That summer Annie again saw the OB/GYN nurse practitioner for break through bleeding and a vaginal infection, both of which could be Yaz side effects. Anne was prescribed Diflucan, which is another medication that may increase potassium levels in those taking Yaz. The Yaz product monograph contains a warning about this as well, but again, neither her doctor nor her pharmacist noticed.

Dealing with Yaz Side Effects

As the summer progressed, Annie continued to gain weight. I, her mother, thought that it might be related to lunches out with her boss and wasn’t too worried. Her co-workers asked if she was pregnant; in retrospect, I think that she did look pregnant. Additionally, in August, Annie began complaining of insomnia and extreme fatigue; she saw a physician assistant at her newly acquired general practitioner’s office. She was prescribed Lunesta which she continued until the night of her death. This medication can affect heart rhythm so it may have also been a contributing factor in her death.

In September, a lab test showed elevated liver enzymes which can also be a Yaz side effect, and a condition that means that Yaz should be stopped.  When she revisited her GP, she was sent to an endocrinologist, who after hearing Annie’s symptoms and without ordering any tests stated that Annie’s weight gain was caused by fatty liver and prescribed metformin.  Also without any testing, basing her diagnosis on only Annie’s symptoms reporting and an inexplicable assessment of hirsutism, the endocrinologist wrote in her notes that Annie should stay on Yaz for PCOS (an off-label and unproven use). Later, several years after Annie’s death, the Maryland Board of Physicians would exonerate this endocrinologist of any wrong doing.

About this time Annie and I discussed her illness.  She thought that she might have adrenal fatigue (a condition not recognized by mainstream doctors) or that she too might have Lyme Disease.  Her sister, after ten years of suffering, had recently been diagnosed.  Annie and her sister had done a lot of hiking together; some of Anne’s symptoms did match her sister’s. As summer turned to fall, the weight gain continued and Annie seemed depressed. Thinking of seasonal affective disease. I suggested that she change bedrooms to one with increased daylight. I also wondered if changes in our living situation were at play; she and I had been roommates for about a year while her dad was away at school.  In addition, I wondered whether anxiety about finding a job as a lawyer (she was working at TESST college as a librarian) was also affecting her. But, I felt assurance that Annie’s problems would be figured out, since Annie was seeking help from medical doctors.

High Potassium Levels Due to Yaz

By the middle of October Annie was interviewing for lawyer positions and working hard at TESST to make the library nice since their state accreditation was looming.  Her spirits seemed improved, but still the weight gain was continuing. One afternoon she showed me a lab chit that reported high levels of potassium.  After her death, we learned that drospirenone (the progestin part of Yaz) can cause potassium levels to rise so dangerously high that the heart stops.  This can be the causality for “sudden death” as mentioned in the label, and we think that it was a factor in our daughter’s death.

However, after death, the mineral composition of the blood changes rapidly; therefore, it is impossible to prove that high potassium levels were involved. At any rate, Annie and I were ignorant at the time of the high potassium level and thought that high potassium might even be good since we were all taught that eating bananas is good for you.  On another occasion during late October, Annie asked me if I thought that her eyes were jaundiced. Although I didn’t see it, this may have been the case, especially since her liver enzymes were elevated. Jaundice is another serious Yaz side effect listed in the product monograph. Another time, Annie complained that her heart had been racing and asked me if I had ever experienced such a symptom.

The Week Leading up to Annie’s Death

Then came the week before Annie’s death.  My husband Rick stayed home from work one morning with intestinal flu-like symptoms (he never stays home sick); the next day Annie reported having thrown up.  She said that she had a strange pain in her stomach; it just didn’t feel right.  We both deduced that it must be a flu since her dad had also been ill.  That night she complained of numbness in her left arm.  Annie and I both thought of her torn back muscle in May and of her neck surgery a couple of years prior and thought that the pain could be related to one of those conditions. I wanted to take her to the emergency room, but she strongly declined.  If only I had insisted; that numbness was most probably a sign of her tiny heart attack.  Months later the medical examiner would explain to me that her heart had showed signs of healing; she must have had a heart attack several days before she died.

The day before Annie died she asked for my input about whether she should attend a special friend’s birthday party the next night or if she should go to a OB/GYN doctor’s appointment.  We both decided on the birthday party.  Again, if only at the time we had known. However, given that her doctors had ignored some of the serious side effects of Yaz that she was already experiencing, it may be that nothing would have been different even if she had gone to the appointment.

She returned from the party late that Friday evening; I got up and we both had the best time watching a particularly funny episode of Jay Leno.  I awoke around 4 am and found her still asleep in the family room recliner. When we awoke around 8:00 am, she had gone to her room and we went out to perform Saturday morning errands.  When we returned, I could not rouse her; her father frantically tried CPR, but it was too late.

Tragedies Caused by Hormonal Birth Control

I have had a horrible time since my baby’s death especially since we have discovered that no one in a position of authority cares enough to stop the production of these dangerous hormonal birth control pills.  And it’s not only Yaz and its sister drospirenone pills that kill and maim (strokes, pulmonary embolisms, and heart attacks occur) but also other hormonal pills and devices put on the market since the early 2000’s cause similar tragedies.  A friend of ours whose daughter died due to Nuvaring-induced pulmonary embolisms, took MEDWATCH reports and worked with a statistician to discover that between 600 and 800 American women die each year as a result of hormonal birth control in the United States.  As we continue to tell our story and to advocate for change, I pray that one day our voices will be heard so that so many lives will not be taken or ruined.

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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Medical Dismissal: Pulmonary Embolism on the Birth Control Pill

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My name is Leslie, and I’m now 35 years old and living in Chicago with my partner and 19-month-old daughter. More than a decade ago, in 2003 when I was just 23, I was living in Washington DC and working my first job after college. I had just joined a small firm that did research, and I was traveling by car to rural areas in the Midwest and South to conduct surveys and focus groups. My partner was living in Ohio, so I also made frequent car trips to visit him. I had never had any serious health problems. I was always in good health, and although I was 5 pounds above a healthy BMI thanks to the unhealthy habits of grad school, I was exercising regularly (three workouts a week at Curves, plus walking as part of my commute each day) and eating well. I was also taking birth control pills, a brand called Mircette that I would later learn is classified as a “3rd generation pill,” which was associated with higher rates of blood clots such as deep vein thrombosis and pulmonary embolism.

The Start of Symptoms

Just six weeks into my job, following a trip that included some 15 hours driving over the course of a few days, I began to feel a soreness across my chest. It was an ache, not unlike the soreness you might feel from doing push-ups, but without the tenderness-to-touch, and I hadn’t been doing chest exercises. I also started to notice I felt out of breath from little exertion, like walking the 50 feet from my desk to the front office. It seemed odd, but it was only when I got a terrible headache a week later that I started to think maybe I should see a doctor.

Dismissed and Misdiagnosed Twice by Medical Professionals

It was a Friday afternoon, and, new to the area, I hadn’t yet established a primary care doctor, so I went to the urgent care clinic at my HMO.  The doctor took an x-ray that came back negative and an EKG that was normal. She said I might be coming down with a cold, which can cause chest soreness and the headache, so to go home and rest and see my doctor if it had not cleared up in a few days or if my symptoms changed. I felt satisfied with that and went home for the weekend.

But the pain got worse.  It transformed into a sharp pain in my side and the back of my shoulder, near my neck.  Still, I didn’t want to go back to the urgent care because I didn’t want to appear silly.  But on Monday morning as I was waiting for the bus to go to work, I coughed a phlegmy cough into a tissue. I was shocked to look at the tissue and see bright red.  I knew something must be wrong, but I had no idea what. When I got to work, I called the HMO and made an appointment with a nurse practitioner, who had an opening the next morning.  It was now a week and a half since the onset of symptoms.

At the appointment, I gave my short description to the intake nurse: earlier chest wall pain that was now pain in my side and upper back, shortness of breath, and a few bloody coughs.  Yet when the nurse practitioner came in, the first thing she said to me was,

“Well, they didn’t find anything wrong with you on Friday, and I’m not going to find anything today, but I’ll examine you anyway.”

With an attitude like that, is it any wonder she completely misdiagnosed me? I was in tears from the pain when she asked me to take deep breaths while she listened to my chest. I was freezing cold under the a/c vent in the flimsy hospital gown they gave me. Yet, she lectured me on my huddled posture, told me my exercise regimen was inadequate, and said I had strained a muscle reaching for the telephone at work—that’s how she explained the chest pain; they were merely weakened muscles strained by reaching for the phone. The bloody cough? She couldn’t see a laceration in my throat, so it must be postnasal drip. Her strict instructions were to go home, apply moist heat, take over-the-counter pain killers, and not to return to the doctor for two weeks.

Diagnosis of Pulmonary Embolism

I went home distraught. I knew something was wrong. Google searches for chest pain and bloody cough consistently came back with pulmonary embolism, but I found that so hard to believe.  I called my close friend who was in medical school. “Go to the emergency room now!” she told me.  But I still hesitated—the nurse practitioner was so insistent that nothing was wrong and made me feel like a hypochondriac. I compromised by calling area doctors’ offices until I found a doctor who would see me that day. Thankfully, I had great health insurance so the cost wasn’t a barrier (I was, after all, bearing college debt and had just financed an interstate move).

The doctor was a kind, fatherly man who heard a decreased amount of air in my right lung when he listened to me breathe. “Probably just a collapsed lung—don’t worry, that’s not as bad as it sounds.” He scheduled an x-ray the next afternoon. This time, the x-ray showed a spot on my lung. The doctor called to tell me and said it could be pneumonia and ordered a CT scan for the following day.

I went to the outpatient wing of the hospital and was the last patient to be scanned that day. It was two weeks after the onset of symptoms. After a couple hours of waiting for the CT results (there was a malfunction with the equipment that sent the scan to a doctor in another wing to read), the doctor walked over to our wing to read the scan. While I waited, I walked over to the door where he and the technicians sat looking at my results. I’ll never forget the shocked look on his face.  The technician quickly whisked me to a chair out of view. After a couple minutes she brought me back and the doctor calmly explained I had a bilateral pulmonary embolism blocking most of my right lung and part of my left, showing me an image on the monitor of grayish masses covering my lungs.

One of the techs wheeled over a wheelchair to take me to the emergency room immediately. “Oh, I can walk,” I told him. No, they insisted I be wheeled. I knew it was serious when he wheeled me through a packed emergency room, straight past the nurses’ station, and to an empty bed waiting for me. No one gets a bed in a packed ER unless she is really sick.

Still, when I called my parents to tell them what was going on, I insisted they not make the 8-hour drive until the next morning. I told my partner, busy with his graduate classes, that I was fine and not to come. The gravity of what happened didn’t sink in for several days.

Five days later I was released from the hospital.  I was diagnosed with a bilateral PE and was found to have Factor V Leiden, homozygous, an inherited condition predisposing me to clotting, that I got from both parents. This disorder had been discovered 7 years before my clot and gave me a roughly 80-fold increased risk of clotting. They also diagnosed me with Vitamin K deficiency, although that was later found to be incorrect; the blood-thinning drugs they put me on caused a false positive.

Recovery and Ongoing Risks

My treatment was to take Coumadin, an anticoagulant, and have regular blood checks. My chest continued to hurt for months. Hiccups made me fall to the floor in pain (literally) for the first couple weeks. There was no evidence of a deep vein thrombosis that could have caused a clot to travel to my lung, and I never noticed symptoms of one, but they could say one must have existed in order for the clots to travel to my lungs from elsewhere in my body.

After two years, I went to see a specialist who agreed I could discontinue the Coumadin as long as I practiced excellent prophylaxis, including taking a blood thinning shot whenever I take long car or plane trips. I wanted to get off the Coumadin because, ironically, my father had developed his first DVT while driving the 8 hours to see me in the hospital; his second clot came a year and a half later, and the Coumadin therapy that followed led to a fatal brain hemorrhage. I did not want to be on Coumadin if I could avoid it, and the specialist judged that I had a slightly higher risk of a dangerous bleed on Coumadin than I had of a clot off of it.

12 years later, I’m living a normal life, but I can never go on hormonal drugs again. It was several years before I learned not to panic every time I felt a twinge in my lungs.

When I was prescribed hormonal contraception, there was no family history to tell me I had a hereditary clotting condition, and it wasn’t even a thought to avoid traveling for work for health reasons (what healthy person would think of that?). Going onto hormonal birth control made my body a ticking time bomb, but no one knew that until the bomb went off.  I’m lucky to be alive.

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 Study Final Week: Add Your Data Now

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Birth Control Blood Clots Study

A few months ago, Lucine Health Sciences and Hormones Matter began a pilot study looking at risk factors and warning signs/symptoms in women who have developed blood clots while using hormonal contraception. This study consists of a survey questionnaire, and a personal story/case report, which is shared on Hormones Matter with the study participant’s permission. We would like to thank all of the women who took the time to complete our survey and who courageously shared their stories to help inform our research.

This phase of the study will close on July 25, and we will then perform a full data analysis on all of the results. In the mean time, we have already written about some of our early results here and here. What we have learned so far from our survey results suggests that some information that is commonly accepted about the risks for blood clots on hormonal birth control may not be true, and that the risk information is not communicated to women in a realistic and truthful way.

What We’ve Learned So Far

Early Survey Results

Many blood clots develop after years of use. Although it is thought that the risk for developing a blood clot is highest in the first year after starting or restarting hormonal contraception, our data to date show that 75% of women developed clots after the first year on the medication, and only 25% developed clots within the first year. Many women developed clots even after significant lengths of time on the medication, in some cases, even after up to 21 to 30 years.

Smoking is a risk but not THE risk. Many women are led to believe, by information provided to them by pharmaceutical companies and their doctors, that they are only at risk of a blood clot if they are over 35 years old, and smoke. However, 94% of women in our study were not smoking at the time of the blood clot, and 78% had never been smokers. Smoking does increase the risk, but the idea that you are only at risk of you are a smoker is false.

Clotting disorders are not identified. We also discovered that women are not being tested for blood clotting disorders that significantly increase their risk of developing a blood clot while on hormonal contraception. Fully 89% of the women in our study did not have such testing prior to starting hormonal contraception, and a further 9% did not know if they had any testing. Only 2% of the women were able to state with certainty that they had been tested.

These results, as well as additional results, will be explored further when the study is complete. We will be looking at women’s ages when they developed blood clots, warning signs and symptoms, other side effects from hormonal birth control, additional risk factors, and more.

Personal Story Findings

At Hormones Matter, we believe strongly in the power of the personal story. Like case reports, they give us a breadth and depth of information that cannot be captured as well in the more quantitative results. As part of this project, we have been collecting and publishing these stories. In addition to the trends emerging from the survey results, we’re seeing several disturbing trends regarding whether and how risks for blood clots are communicated, tested for and/or identified. In most cases, there appears to be a significant disconnect regarding these risks.

Risks for blood clots are not communicated. What do these stories have in common? The women who developed clots were not aware that these serious complications could develop as a result of hormonal contraception. Laura Buccellato, whose daughter Theresa died at age 16 from a pulmonary embolism, said in her story

“Our doctor did not go over any of the side effects with us or what to look for if something were to go wrong. I trusted my OBGYN because I have been with her for most of my life and she had four children so I never felt she would put Theresa in any kind of harm.”

If women are taking a medication with the possibility for serious injury or death, they should certainly be informed of risks. They should also be educated about early warning signs and symptoms of blood clots.

Signs of blood clots are not recognized by physicians. Another common and disturbing trend has emerged from the personal stories: in the early stages, and sometimes even in the later stages of the blood clot event, blood clots are not considered in the differential diagnosis. More often than not, when women approach their physicians with signs pointing to blood clots, they are dismissed.  The possibility of having a blood clot is not investigated or even considered, and most doctors do not even ask the patient about their use of hormonal birth control. For example, Kerry Gretchen was suffering from the symptoms of a blood clot in her brain for a month, and was sent home from the emergency room twice and told that her symptoms were due to a migraine. This resulted in even more severe effects from her stroke. Susan Eklund McKenzie had taken her daughter Marit to the doctor twice for symptoms related to a pulmonary embolism, but unfortunately this was never investigated, and Marit died at age 18.

Blood clots are devastating. Another commonality is just how catastrophic these blood clots can be. The women who have had strokes (stories are here, here and here) all had to relearn how to perform the daily functions of life, such as walking, writing, showering and dressing themselves, and some of the women have lasting disabilities.

It is known that pulmonary embolism has a high mortality rate, and the women whose stories we have shared who suffered from a pulmonary embolism, all died as a result (stories are here, here and here). Brittany Malone had a massive blood clot in her leg, and as a result suffered pulmonary hemorrhage, respiratory failure, heart attack, irreversible brain damage, and death.

We would all like to think that this could never happen to us, but as Detrease Harrison said, in her story of having a stroke after 23 years on the birth control pill:

“I used to tell people I had no risk factors for having a blood clot, but almost everyone has some kind of risk factor.”

Participate In The Birth Control and Blood Clots Study

There are two weeks left in this phase of our study, and then the survey will be taken down and to analyze the results fully.

If you are a woman who has suffered from a blood clot while using hormonal birth control, we urge you to participate in our study to help us learn more about this important women’s health issue.

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.

If you know someone who might like to participate, please share this article with them.

If you have begun the survey and haven’t yet completed it, please do so in order to enable us to use your data. We cannot use your data, if the survey is not complete.

If you’ve completed your survey but haven’t yet sent us your story, please do so.

We will be continuing to share women’s stories over the next few months, so please continue to follow the study on the Hormones Matter website, on our Facebook page, and on Twitter.

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