thrombosis

Hormonal Contraceptives: Do We Really Know What We Think We Know?

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If you have read any of my posts, you know that this is one of the questions that pervades my work. Do we really know what we think we know? More often than not, the answer is no. Upon examination, what we hold true falls short. In the field of pharmaceutical medicine, where money plays an enormous role in determining what is known about a particular drug, finding the real and honest truth about a medication is difficult and sometimes impossible. Hormonal contraception, because it has been on the market for decades and because as women we really want it to be safe and absent negative side effects, is one of those drugs where what we think we know and what we actually know are two entirely different things.

Over the last few years, we have been commissioned for a two studies on the safety of hormonal contraceptives. One study, the Real Risk project, ended early due to a loss of funding. As a result, Phase 2 data were never analyzed. (We decided to continue collecting data in the hopes of finding funding to complete the study at some point. We haven’t found the funding yet.) Nevertheless, we learned a lot and what we learned should be public. Slowly, some of that information is making its way into blog posts.

Below is a portion of the final report covering the history of the pill, a sort of ‘what they knew when’ of side effects. Looking back at the history of the development of the pill and other forms of hormonal contraception, it becomes clear that the health and safety of the female population was not a primary objective. Indeed, more often than not, the serious side effects were ignored, particularly in the US, setting the precedent for the almost total acceptance of the drug’s safety that we see today. As a woman who used hormonal birth control and developed many of the side effects noted by early researchers, side effects that were ignored by my physicians, reading this is eye-opening. If I had known then what I know now I would have never used this drug.

The History of Birth Control Induced Side Effects

The first case of birth control induced thrombosis, a pulmonary embolism, was reported in 1961, only one year after the drug’s release. This was soon followed by the first contraceptive induced myocardial infarction in 1963. In the years that followed, research groups, primarily in Great Britain, began delineating the risks and mechanisms by which hormonal contraceptives induced the state of hypercoagulability that led to thrombotic events. Much of this research, along with the publication of Barbara Seaman’s book, The Doctor’s Case Against the Pill, formed the impetus for the Nelson Pill Hearings (NPH) in 1970.

Early on, British researchers noted significant changes in blood clotting mechanisms in the women using oral contraceptives compared to those who did not, but also compared to pregnant women. Hormonal birth control, it appeared, increased several pro-clotting factors while simultaneously decreasing anti-clotting factors; changes in hemodynamics that were in many ways, though not entirely, akin to late pregnancy and early postpartum where blood clots are known risks. This was in addition to systemic vessel wall damage that simultaneously set the stage for both clotting and hemorrhage. They also found that clot risk increased over time and was compounded by other variables such as exercise and smoking. In 1967, based upon the results of three studies, the British Medical Research Council issued a preliminary communication that stated:

“The sum of the evidence, however, is so strong that there can be no reasonable doubt that some forms of thromboembolic disorder are associated with oral contraceptives. The association is particularly strong in the group of women with no known medical condition predisposing to thrombosis.”

Politics and Money Rewrite History

These findings, though clearly implicating hormonal contraceptives in thrombosis, became immediately controversial and were all-but-entirely dismissed by American medical societies who argued an inherent difference between British and American women (NPH pages 6222-6259); one that supposedly predisposed British women more strongly towards blood clots than their American counterparts.

Additionally, according to testimony made in the Nelson Pill Hearings, the American Medical Association allowed industry experts to write and publish the early safety statements while simultaneously refusing to publish research and case reports indicative of risk (NPH page 6113). G.D. Searle, one of the early manufacturers of oral contraceptives, went so far as to ‘vote away’ the risk of thrombosis at a medical conference (NPH pages 6108-6133). Sales and marketing materials were designed to dismiss the risk and obfuscate the research (NPH pages 6218-6296). This led American doctors, researchers, and the population as a whole, to presume falsely that the pill was safe and without risks. It bears noting that by failing to publish the evidence implicating the pill in thrombosis and by allowing industry experts to write and publish the safety reports, the American Medical Association set the precedent for what has now become a complete abrogation of scientific and medical ethics, not only regarding contraceptives, but also, for every other drug on the market.

Beyond Thrombosis: System Wide Side Effects

A persistent notion in contraceptive research is that progesterone and estradiol, the two hormones mimicked in contraceptives, are singularly involved with reproduction. What follows is a presumption that these hormones have no impact on other tissues and altering them affects nothing but the intended target. Contrary to this popular belief, these steroid hormones are not solely involved in reproduction. Hormone receptors are distributed throughout the brain and the body, on every organ, in every tissue, and in every fluid. Hormones, thus, regulate every physiological system. When synthetic hormones bind to endogenous or native hormone receptors, they effectively override the body’s natural regulatory functions in ways we have yet to comprehend fully. It is not unexpected then that the use of hormonal contraceptives would have broad based effects. Thus, in addition to the higher incidence of thrombotic events in otherwise healthy women, physicians and researchers testifying at the hearings noted clear associations between the use of hormonal contraceptives and a broad array of disease processes. Some of those effects are highlighted below.

Metabolic Disturbances

Perhaps some of the least well-recognized effects of these hormones include those to a woman’s general metabolism. Hormonal birth control induces wide ranging metabolic disturbances in insulin and glucose regulation, lipid control, and in heart rate, rhythm and pressure leading to weight gain, diabetes, high blood pressure, and cardiovascular disease. One researcher testified accordingly:

“There are more than 50 ways in which the metabolic functions of the body are modified, and to say therefore that normal physiological function has been demonstrated in the years of oral contraception is to overlook a very large amount of information (Dr. Victor Wynn, NPH page 6311).”

“When I say these changes occur, I mean they occur in everybody, more in some than in others, but no person entirely escapes from the metabolic influence of these compounds. It is merely that some manifest the changes more obviously than others (Dr. Victor Wynn, NPH page 6303).”

And yet another said:

“These alterations, which have been demonstrated, include changes in carbohydrate metabolism, fat metabolism, protein metabolism, and the endocrine, liver, nervous and vascular system, among others. The findings are straightforward and reproducible (Dr. Hilton Salhanick, NPH pages 6382).”

Impaired Reproductive Capacity

Impaired reproductive capacity, likely due to the pill’s effects on the pituitary gland and its ability to prevent ovulation was noted (Dr. James Whitelaw, NPH pages 6009-6019). Case studies presented by the physicians indicated use of hormonal birth control often delayed fertility while the body re-adjusted to its non-pill state. In at least 1-2% of the women who used the pill, however, it caused permanent infertility. Ovulation never resumed. Additionally, women who used the pill were more prone to miscarriage, stillbirth, and chromosomal abnormalities in the offspring; abnormalities that as one researcher indicated were:

“…completely incompatible with live birth…”

Sadly, much of this research was disregarded and there has been very little work since. In fact, the use of oral contraceptives to regulate cycles in advance of fertility treatment is now commonplace. Despite research suggesting it is contraindicated.

Beyond the immediate effects to fertility and reproduction, early researchers postulated potential transgenerational effects. That is, when women use hormonal contraceptives, ovulation is suppressed unnaturally and germ cell damage to the ovarian follicles is possible: damage that may not only express itself in the first generation, but also in subsequent generations, e.g. in her grandchildren and great grandchildren.

“An unequivocal abnormality produced by estrogen-progestogen is the suppression of ovulation itself. It is only reasonable to consider the ultimate fate of the ovum that would have been normally released from the ovary. We do not know whether the ovum dies or survives. If it survives, is it altered in any way?”

Cancer

One of the most damning, but again disregarded and disputed, findings of the early researchers was the association between hormonal birth control and cancer. Researchers testifying at the Nelson Pill Hearings noted that cancer developed in all animal models tested when oral contraceptives were administered. In fact, the use of synthetic estrogens is banned in animal husbandry in Europe because it causes cancer in the animals and also in the workers. In the US, there is no such ban, owing partly to the decades delay in cancer onset but mostly to industry lobbying.

“I think here is the proper place to point out that when we talk about the pill being used by 18 million people in the prime of life throughout the world, we are in fact considering an internal pollution, the extent of which is not yet known, but the nature of which is indeed known. And we are threatening the destruction of a large segment of one of our most precious natural resources, the young women of our society (Dr. J. Harold Williams, NPH pages 6219).”

Liver

Liver function, because of its role in drug metabolism and detoxification, is inevitably altered by the use of any medication. To what extent the liver is impacted, is a key safety issue reviewed during drug approval considerations. As one might expect, hormonal contraceptives degrade liver function. At the hearings, researchers testified to four key changes in liver function.

  • A 40% reduction in the ability to clear sulfobromophatalein (a compound used to test liver function)
  • An increase in liver enzyme activity (a marker of liver damage) in 20% of the women who use hormonal contraceptives
  • Jaundice in 1 in 10,000 women that subsided after discontinuation of OC (Dr. Philip Corfman, NPH Pages 6391-6426)
  • Reduction in total plasma protein level (Dr. William Spellacy, NPH Pages 6426-6445)

Overall, the changes in liver function were summed up as follows:

“The immediate effects include the alteration of several of the laboratory tests used in medical diagnoses. Aggravation of existing liver disease, if present, to the point where jaundice may be seen has also been shown. There is no answer to the query of will permanent liver damage result from the use of the oral contraceptives.”

We have yet to answer the question of permanent damage, although a large study in 1997 suggests that liver damage abates upon cessation.

Disturbed Immune Function

One of the most commonly recognized but simultaneously disregarded effects of hormonal contraception include disturbances in immune function. Autoimmune diseases such as lupus and rheumatoid arthritis are significantly more common in women than men, especially in women who use hormonal contraceptives. Once again, the onset and increased incidence post-pill use was noted as soon as these medications hit the market, but because of the complexity of these diseases, all but disregarded. Early researchers noted that with new onset cases once contraceptive use ceased, symptoms resolved and most patients remained symptom free for at least the 2.5 years of the study period (Dr. Giles Boles, NPH pages 6086-6108). In recent years, awareness of this connection has increased somewhat.

“Over the past three years we have seen 22 young women who… after beginning oral contraceptives developed [arthritic symptoms]. The joint swelling was usually limited to the hands. On cessation of the oral contraceptive, the symptoms disappeared… We specifically inquire as to the use of oral contraceptives in all young women we see with rheumatic complaints…”

In addition to the increased incidence of autoimmune diseases associated with hormonal contraception, other immune system changes were noted, and again, dismissed.

“The Pill, by interfering with the natural secretions of the vagina, leaves women susceptible to a variety of infections, including syphilis and gonorrhea. Those who use the Pill develop VD, other sexually transmitted infections, and vaginitis twice as often as the female population as a whole.”

Namely, the use of hormonal contraception increases the incidence of bacterial and fungal infections and the risk for developing sexually transmitted diseases. More recently, researchers have identified the mechanisms by which contraceptives initiate these disease processes – via changes in cervical immune composition that increase a woman’s vulnerability to infection.  Hormonal contraceptives also predispose women to persistent MRSA infections.

Psychiatric Illness

Perhaps one of the more disturbing findings regarding hormonal contraceptives is their role in new onset psychiatric illness and their capacity to induce suicide. In the original trials, at least one women committed suicide while taking the pill. Her case, along with at least 18 other deaths (Dr. Edmond Kassouf, NPH pages 6108-6133), was omitted in the reports filed to the FDA.

“There is considerable incidence of mild to moderate psychiatric morbidity [disease] associated with the use of combination oral contraceptive agents… In three of the four studies, there seems to be agreement that those who have required psychiatric care in the past will be more at risk for the development of morbidity, including psychosis. One study also suggests that there may be some increase in the depth of illness the longer the medication is taken (Dr. Francis Kane, NPH page 6457).”

“The emotional or psychiatric problems are the complications which seem to me to have the most serious potential danger. Three patients have stated that they were desperately afraid that they were going to kill themselves… After the pills were omitted, the depression and suicidal fears of the three patients disappeared, as did the depression of the other patients (Dr. John McCain, NPH page 6473).”

“It is disturbing to consider the patients on the pills whose depression may have ended in suicide and/or homicide with no recognition of any association with the contraceptive pills… Personality changes could be a factor in other conditions such as automobile accidents and divorces (Dr. John McCain, NPH page 6473).”

Despite the early research, connections between hormonal contraceptives and mental health have been largely ignored. In fact, since the nineties, hormonal contraceptives have been marketed specifically for depression and anxiety in direct opposition to the data suggesting these medications cause and/or exacerbated psychiatric illness. As recently as three years ago, an epidemiological study suggested,

“…a protective association between hormonal contraceptive use and depressive symptoms, as well as suicide attempts, in a population-based sample of young, sexually active US women.”

Fortunately, the tide appears to be changing. Fifty years after the release of these medications and after generations of women have complained of serious mental health issues while using hormonal contraceptives, a large study published definitive data indicating that hormonal contraceptives did indeed induce depression, especially in adolescents. No doubt, industry sponsored studies will surface shortly and contradict these findings.

Hormonal Contraceptives Today

Today, 80% of American women will use hormonal contraception at some point in their lives, mostly oblivious to their risks for thrombosis or any other of the side effects. Indeed, most women and physicians consider the side effects extremely rare, if they consider them at all. This is largely due to the fact that the American College of Obstetrics and Gynecology and other medical associations routinely claim they are safe. At any given time, 62% of women of reproductive age are using at least one contraceptive method. In contrast to the perceived lack of side effects, the numbers tell a different story. Fully 60% of women will cease using hormonal birth control within six months of initiation because of side effects and 30% will try up to five different types of hormonal contraceptives, switching between brands to temper side effects.  Given that most brands may vary in name only, switching between brands is often a fruitless endeavor, something prescribing physicians seem not to appreciate.

That there are over 200 brands currently available on the market worldwide, suggests an abundance of options, but from a pharmacological standpoint, not much has changed in hormonal contraceptive technology over the last half century. The predominant estrogen used in contraceptives remains the same as was developed decades ago, a compound called ethinyl estradiol (EE2). With the exception of the fourth generation progestins, the progestins used in modern contraceptives involve only slight modifications to the original compounds. Even the ‘newer’ delivery methods, like the intrauterine device and the cervical ring, were developed decades ago, in the 1950s and 1960s. For all practical purposes, contraceptive technology remains as it was over half a century ago. Therefore, today’s contraceptives carry as many or more of the side effects and risks as their predecessors did.

Only now, our increased familiarity with these drugs has fostered a deeply ingrained but false sense of safety. Phrases suggesting that after 50 years on the market these are among ‘the most studied medications’ pepper the literature. When in fact, these medications were never studied properly before their release:

“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 (Dr. Paul Meier, NPH pages 6548-6560).”

And they have not been studied conclusively since. For all intents and purposes, safety issues associated with hormonal birth control remain largely under-investigated and unrecognized. What research exists generally favors commercial interests, and if we’re honest, our interests as women. We want easy, safe and effective birth control. We need it and so we ignore the side effects and ignore any research that confirms our suspicions. We allow ourselves to accept the risks. Maybe it’s time we didn’t. Maybe it’s time we dig in and find out what is really going on and then fix the problems.

Share your Story

If you have a birth control story, please consider sharing it on Hormones Matter.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Image created in Craiyon.com 

This article was published originally in June 2017. 

Covid Notes: Thiamine Reduces Thrombosis and Mortality

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A recently published retrospective study showed ICU patients receiving thiamine therapy had a significantly reduced thrombosis and mortality rate compared to patients not treated with thiamine. The study, conducted in two hospitals in Saudi Arabia reviewed the cases of 738 critically ill Covid patients admitted to the ICU. As this was a retrospective study looking solely at electronic medical records, there was no determination of thiamine deficiency or clinical criteria to determine who received thiamine or at what dose. This was simply a review of all cases during a defined period of time that were admitted to the ICU and who, based upon clinical judgement of the treating physician, may have been prescribed thiamine.

Study Details

Among 738 patients, 83 had received IV or oral thiamine in doses ranging 50-200mg per day for an average of 7 days. This was in addition to whatever medical or pharmaceutical interventions provided. Using a statistical tool called a propensity score, the researchers then selected pair matches to those 83 patients for further analysis of several endpoints. The endpoints evaluated included:

  • Association between thiamine use as an adjunctive therapy with in-hospital and 30 day mortality
  • Duration of mechanical ventilation, length of stay and complications such as
    • Acute kidney injury
    • Thrombosis
    • Respiratory failure
    • Acute liver injury

Results

Across all variables, patients who received thiamine faired significantly better than those who did not. The most striking findings included mortality and thrombosis reduction. Thiamine reduced in-hospital and 30-day mortality by 61% and 63%, respectively compared to propensity matched controls. Additionally, critically ill ICU patients who received thiamine were 81% less likely to develop thrombosis, and non-significantly less likely to develop kidney damage or liver damage. Inasmuch as thrombosis is major contributor to mortality with COVID, this finding is huge.

Things to Consider

As this was a retrospective study and there were no determinations regarding deficiency or guidelines regarding dosing or other treatment protocols given concurrently, it is difficult to fully appreciate the role of thiamine in COVID recovery by traditional research parameters. Nevertheless, if we look at the role of thiamine in energy metabolism, in immune function, in controlling hypoxia, it makes sense that no matter what other confounding variables may detract from or enhance recovery prospects, thiamine, by its very mechanisms of action, would improve outcomes; something that we have been proposing since well before the pandemic began. Maybe now, more will listen.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

5 Surprising Reasons Not to Use Hormonal Birth Control

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The following is a list of some the health factors that increase your risk of side effects from taking hormonal birth control. It is by no means a complete list of contraindications but you may find some of these surprising. I know I did.

Five Reasons You May Want to Reconsider Hormonal Birth Control

Reason 1: Smoking and Age

You are probably familiar with these warnings. You may have heard them on television commercials or seen them on magazine advertisements. Or maybe you read my article about risk communication and saw them there. The problem with these warnings is that the wording makes it seem like you are only at risk if you are over 35 and a smoker. But the truth is that these two risk factors stand independent of each other. You are at increased risk if you are over 35 years of age. You are at increased risk if you are a smoker of any age. And if you are a smoker who is over 35, you have an exponentially higher risk for blood clots when using hormonal birth control.

Reason 2: Migraines

According to a 2010 article in the Reviews in Obstetrics and Gynecology, 43% of women in the United States suffer from migraines. That’s a huge number of women. Also, according to the same article, 43% of women using birth control are using hormonal contraception (the pill, rings, shots, implants, etc.). I’m not a statistician but I’m guessing there is some overlap between the women that suffer migraines and the ones using hormonal birth control. This is problematic for two reasons:

  1. A great deal of evidence suggests that migraine, particularly migraine with aura, is associated with an increased risk of ischemic stroke, and that this risk may be further elevated with the use of hormonal birth control. But if you don’t believe me, both the American College of Obstetricians and Gynecologists and the World Health Organization advise that women who suffer migraines with aura should not use hormonal contraception.
  2. Reevaluation or discontinuation of combination hormonal contraception is advised for women who develop escalating severity/frequency of headaches, new-onset migraine with aura, or nonmigrainous headaches persisting beyond 3 months of use.

A 2016 meta-analysis of seven research studies demonstrated “a two- to fourfold increased risk of stroke among women with migraine who use combined oral contraceptives (COCs) compared with nonusers.” But once again, like so many other things about hormonal birth control, the authors of the study report that research is lacking in this area and more studies need to be done.

Reason 3: Family Clotting Disorders

Many people have a clotting disorder and simply don’t know it. When I had my stroke while on birth control pills, I had no idea that I had the fairly common clotting disorder Factor V Leiden (FVL affects between 3-8% of people). But what I did know was that my grandmother had had two strokes. And my aunts and uncle had all had blood clots.

Unfortunately, women are not systematically tested for clotting disorders before they begin using hormonal birth control. This is very dangerous and why it’s so important to give your doctor a thorough family history; something I know I wouldn’t have considered that vital when I was 18 years old.

A lot of health professionals don’t take the time to review your family history, making it even more important that you mention your family history of blood clots and your concerns about hormonal contraception. You might even insist on being tested for clotting disorders before increasing your risk of a dangerous and sometimes deadly blood clot.

Reason 4: Depression and Mental Health

I explore this further in this article but the basics are:

  • Hormonal contraceptives can cause mental health issues
  • Women who suffer from mental health issues are much more likely to suffer from increased symptoms when on hormonal contraception
  • Often the longer hormonal contraception is used, the greater the symptoms
  • Discontinuation of hormonal contraception can usually alleviate mental health symptoms

Reason 5: Diabetes

Dr. Hugh J. Davis, the first doctor to testify at the Nelson Pill Hearings said the following (page 5930):

“A woman, for example, who has a history of diabetes or even a woman with a strong family history of diabetes is not an ideal candidate for using oral contraceptives… [they] produce changes in carbohydrate metabolism which tends to aggravate existing diabetes and can make it difficult to manage.”

Hormonal birth control elevates blood glucose levels, can increase blood pressure, increases triglycerides and cholesterol, and accelerates the hardening of the arteries, among other things. They knew this in 1970. But what about the research now? Well, if you’ve read any of my other articles it probably won’t surprise you that the current research is… wait for it… you guessed it… INCONCLUSIVE! Here’s a look at what I’ve found:

“Cardiovascular disease is a major concern, and for women with diabetes who have macrovascular or microvascular complications, nonhormonal methods are recommended.

There is little evidence of best practice for the follow-up of women with diabetes prescribed hormonal contraception. It is generally agreed that blood pressure, weight, and body mass index measurements should be ascertained, and blood glucose levels and baseline lipid profiles assessed as relevant. Research on hormonal contraception has been carried out in healthy populations; more studies are needed in women with diabetes and women who have increased risks of cardiovascular disease.”

And:

The four included randomised controlled trials in this systematic review provided insufficient evidence to assess whether progestogen-only and combined contraceptives differ from non-hormonal contraceptives in diabetes control, lipid metabolism and complications. Three of the four studies were of limited methodological quality, sponsored by pharmaceutical companies and described surrogate outcomes. Ideally, an adequately reported, high-quality randomised controlled trial analysing both intermediate outcomes (i.e. glucose and lipid metabolism) and true clinical endpoints (micro- and macrovascular disease) in users of combined, progestogen-only and non-hormonal contraceptives should be conducted.

Not enough evidence is available to prove that hormonal contraceptives do not influence glucose and fat metabolism in women with diabetes mellitus.”

As a side note, a recent study demonstrated a link between hormonal contraceptives and gestational diabetes.

Contraception is a very personal choice. I believe all women should research the risks associated with using hormonal contraception, but especially if you experience any of the health conditions above. Should you weigh the risks and benefits of using hormonal birth control and decide it’s still the right choice for you, please take a moment to review the symptoms of the blood clot and seek help immediately if you notice any of these.

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.

Sharing My Story, Feeding the Hope

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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.

5 Things Not to Say to a Stroke Survivor

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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.

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

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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.

A Stroke from Hormonal Birth Control: Part 2

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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 the first part of my story here.

Recovering from a Stroke

The repercussions of what having a stroke meant began to sink in after I was moved out of the intensive care unit.

Once in a regular hospital room, a therapist came by to do some tests. She pulled my blankets aside and asked me if I could take off my sock. This test seemed ridiculously easy, but I was willing, just happy that my head no longer hurt. I leaned forward and confidently pulled the sock off my foot. “Great,” she said. “Now put it back on.” So I put the sock back on my foot. Only I didn’t. Because I couldn’t. I stared at the sock in my hand and then I stared at my foot, knowing that I should be able to complete such a simple task, yet unable to.

This was the first of thousands of tests during my recovery. And it was the first of a thousand times when I knew I used to be able to do something that I could no longer do. It is one of the strangest sensations I have ever experienced.

I spent a week in the hospital and another week in an in-patient rehabilitation facility. Before I was discharged to go home (for another month of out-patient rehab), the psychologist told me that things would feel like “Christmas at the mall” instead of say, an ordinary Tuesday afternoon. It was an appropriate analogy for how overwhelming everyday life would be and one that I would come to understand the first time I broke into sobs when I dropped a bowl of cereal on the floor. I was cautioned against trying things like swimming alone, as I might not remember how and accidentally drown myself. They also told me that I had lost millions, maybe billions, of brain cells that I would never get back. And that I might never be able to work a “real” job again.

At home, I set about re-learning things like how to hook my bra, tie my shoes, and wash my own hair. Once I mastered these, I began to wonder what else I could do. I was extremely lucky that I made progress every day, but some days it felt like I’d never be back to normal. I wasn’t sure what normal even was anymore. After the warning from the psychologist, I was scared that I wouldn’t be able to handle a full-time job. And because of the seizures, I could not drive for six months which was devastating and isolating, especially for someone as independent as I had always been. Since I was stuck at home, it seemed like a good time to force myself to relearn math (yet another thing I knew I had been good at but could no longer do). I began to study for the GRE and less than six months later, I was accepted to graduate school.

Searching for Answers

When it came time to write my thesis, I decided to use my stroke as an inspiration for my research. I wanted to know why I had had a stroke, why no one had ever told me the risks involved with taking hormonal birth control, why I never knew there was a possibility that I had a clotting disorder which would greatly increase my risk. In short, I was looking for a smoking gun; someone or something I could point my finger at and say, “Aha! That is where the breakdown occurred. This is who should be blamed!”

But what I found was much more complicated. What my doctors had told me, that I was an anomaly, seemed to be supported by the research that I found. Studies show that most people get a blood clot within a year of starting hormonal birth control. Mine happened 10 years later. I learned that Factor V Leiden is fairly common but that women aren’t tested for it before being prescribed hormones because testing that many women would be expensive. I also found research that said pregnancy is more dangerous than birth control.

Putting aside the false dichotomy that the only two choices a woman has are to be pregnant or be on hormonal birth control, the message I took away from all of my research was that my stroke was an acceptable risk to save countless women from pregnancy. That even though my stroke could have been prevented by a simple blood test before I was even prescribed birth control pills, my value as a human woman was not worth the greater expense. As a child of the 80s and a product of American capitalism, this didn’t shock me as much as it probably should have. After all, I lived in a world of the Ford Pinto. What I didn’t realize at the time and would only come to understand years later, was that I began to internalize the blame for what happened to me. Maybe it was my fault for not knowing the dangers, for not understanding the risks, for being so stressed out that my body failed me.

Was It My Fault?

In researching my thesis, I discovered that pharmaceutical companies intentionally make the risk communication in advertising, and especially in the package with the birth control, dense and confusing. And I also found that women who have taken hormonal birth control don’t adequately understand the potential side effects, nor do they even know the symptoms of blood clots. There is very little accurate information about clotting disorders online. Even if my situation was rare, these facts are extremely troubling. But what I have since come to learn is that my stroke was actually not so rare.

Recently I’ve been contacted by an amazing group of people; researchers, families who have lost their daughters to hormonal birth control, fellow survivors, writers, and scientists. They’ve helped make it clear to me that I’m not just an anomaly. As you can see from the other stories on this site, hormonal birth control has very real, very harmful risks. And we have lost far too many amazing young women to stand idle any longer. Our standard must be higher than accepting these women’s lives as collateral damage. Together with this group of health advocates, we are embarking on a journey to give women what they need-information to make the right choice for them. Because what happened to me was not my fault. It’s time to stop blaming myself. Yet even as I write these words, I still have some doubt. And that doubt shows me that I haven’t fully recovered from my stroke yet. I still have work to do on this journey. And that work may take me the rest of my life. For more on what long-term recovery from a traumatic brain injury looks like, see Part 3 of the series.

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.

A Stroke from Hormonal Birth Control: Part 1

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I opened my eyes and saw my husband, Josh, holding my hand, looking very serious. He was telling me that we would get through this, that even if I had to learn to walk again, that whatever it took, we would be okay. I remember thinking, “It’s okay, honey. I just have a headache.” We had been married for a year. The next time I opened my eyes Josh was leaning over me. I was on my side in the emergency room and the doctor had just asked him to hold me steady while he gave me a spinal tap to check for meningitis. Josh held me so firmly, terrified by the risks of a misplaced needle, that his arms were shaking from the strain. I tried to tell him, “Don’t worry about holding me. I can’t move anyway.” I had lost the use of my limbs hours before, maybe even days. And now it seemed my power of speech was gone, as well.

The headache had started a month earlier. I remember exactly when because it woke me in the middle of night and I had never had that happen before. We were visiting friends in New York right before Christmas. I got up and took some ibuprofen and didn’t give it much more thought. But it never really went away. I saw a chiropractor. I took more ibuprofen. I checked out a book on meditation. By the time I saw a gynecologist, I also had an unexplainable pain in my left thigh. The gynecologist told me the pain in my leg was probably just a muscle strain and she prescribed Imitrex for the headache, a migraine medication that shrinks the blood vessels in the brain.

The migraine medication made the headache go from dull and persistent to unbearable. I visited a health clinic where the doctor suggested an appointment with a neurologist the following week. That night my left arm started to go numb. I called a local pharmacist who said it might be my birth control pills. That’s crazy, I thought. I’ve been on them for 10 years. I slept on the couch because I couldn’t bear the thought of having to move to the bedroom. The music that had been on the television roared in my head like it had been trapped there on repeat. The next day I called the health center again and they told me to go to the emergency room.

Over the course of the next two days I would take 3 ambulance rides, be sent home from the emergency room twice, begin to lose all control of my body, and be given a very stern lecture by a nurse who thought I needed to learn how to “manage my stress.”

The spinal tap in the emergency room was not the first time Josh had to hold me down. Earlier that day, he tried to restrain me while my body thrashed wildly. During the seizure, I told myself that if I just calmed down, it would stop. It must all be in my head since the doctors said it was just a “tension headache.” We locked eyes, both of us terrified of what was happening to me. When the shaking finally subsided, he asked me if he should call 911. Again. All I could do was nod.

I did not have meningitis. There were blood clots in my brain and because they had not been treated right away, one of the veins in my head had burst and was bleeding. I was having a massive stroke.

Later, Josh would tell me about overhearing the neurologist and the neurosurgeon arguing. The neurologist thought they should operate. The neurosurgeon thought it was too risky. Neither wanted to be there. It was Martin Luther King, Jr. day. (I have since learned never to get sick on a holiday weekend.) In the end, they didn’t operate. I don’t remember exactly when they told me that I had had a stroke. But I know I had no understanding of what that meant. (I find that even now, ten years later, I am still learning.) As far as I knew, that was something that happened to old people. I was 28 years old.

At some point, they told me that I had a clotting disorder and that this genetic anomaly coupled with the hormones in my birth control had caused my stroke. This wouldn’t mean much to me until after I learned how to walk again, do math again, shave my own armpits again.

Not long after I was discharged from the hospital, I had an allergic reaction to the anti-seizure medication. I returned to the emergency room at the request of my neurologist. This time they immediately took me to an examination room. When the doctor walked in, the same doctor who had finally diagnosed my stroke, he said, “I’m so glad to see you. I didn’t think you were going to make it.”

That statement stayed with me throughout my recovery. Because though intellectually I understood that the stroke could have killed me, I never really understood the gravity of the situation until he said that to me. And it made me begin to really consider what happened to me and why.

I was first prescribed birth control pills at the university health clinic my freshman year of college. I wasn’t even sexually active at the time, it just seemed like a rite of passage. Why did no one tell me about the dangers of the pill? I wondered. And why didn’t anyone tell me that I could have a clotting disorder without knowing it? How many other women have this clotting disorder? How many other women have had blood clots? How many have actually died from hormonal birth control? Throughout my recovery, I struggled with these questions. Eventually, I even tried to answer some of these questions with my master’s thesis. For more on my recovery and thesis work, see Part 2 of A Stroke from Hormonal Birth Control.

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.