hormonal birth control blood clots Archives

Stroke, Birth Control and the Nelson Pill Hearings: What They Knew Then

Published on November 2, 2023

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I had a stroke from hormonal birth control at the age of 28. Prior to my stroke, I didn’t think much about the side effects of hormonal birth control, or any other medication for that matter. Like many of us, I took for granted that if a doctor prescribed the medication, it must be safe. Especially one as widely used and as cavalierly prescribed as birth control pills. I was so wrong. Nearly dead wrong.

Since that time, I have become increasingly aware of how little we know about the side effects of many medications and how many are under-researched before being “approved.” We can see that in the number of medications that get taken off the market. The pressure of the pharmaceutical companies to make a return on their research investment and their exorbitant advertising budget is putting human safety, and especially the safety of women, at great risk. I wrote my master’s thesis on risk communication, how women are informed of the risks of hormonal birth control, and what they know about blood clots. I’ll write more on that later but suffice it to say, the results were not promising. It appears that we are intentionally misled where drug risks are concerned. “Well, of course,” the cynic in me says. “After all, who is writing the risk communication in the first place?” The very people that need to minimize risks in order to maximize profits.

As mentioned in previous articles, I’ve recently begun a research project involving the Nelson Pill Hearings. Senator Gaylord Nelson scheduled these hearings back in 1970 after a number of reports, books (especially Barbara Seaman’s “The Doctors’ Case Against the Pill”), and studies brought up concerns about the safety of the birth control pill. Feminist groups and women’s health advocates attended the hearings demanding that women who had taken the pill be allowed to testify. To which Nelson responded, “I stated in advance of the hearings that every viewpoint would be heard on this issue… There will be women who testify… I will give you all the time—if you ladies will come to see me—would you girls have a little caucus and decide which one will talk one at a time, we can then decide what ladies will testify. Your viewpoints will be heard, don’t worry about that.” Then they were kicked out. And much of the testimony was never made public.

After a great deal of work from Karen Langhart, with the help of Senator Bernie Sanders’ office, and perhaps an invocation of the Freedom of Information Act, we were able to get a near complete copy of the Nelson Pill Hearing transcripts. (I say “near complete” because I have already found at least one instance of a page missing. But more on that later.)

A Massive Experiment

As someone who has survived a stroke directly related to the birth control pill, you can imagine how strange and challenging it is to read these hearings. Here I am pouring over 1500 pages of testimony from countless doctors who are describing problems, side effects, and dangers of hormonal birth control and as far as I can tell right now, they all seem to agree on two things. One, that putting women on birth control pills was (and I would say, still is) a MASSIVE experiment with millions of healthy women. Two, that there simply wasn’t enough research to understand even the short-term effects, let alone the long-term effects. Though these hearings were 46 years ago, I believe we have yet to discover all the ramifications of this experiment.

They Knew: Pill Induced Stroke

From a personal standpoint, one of the most frustrating discoveries I have made so far was found in the testimony of Dr. David B. Clark, a professor of neurology. Imagine my shock as I read him describing the exact symptoms of my stroke. This was particularly frustrating as my doctors indicated that the reason I was misdiagnosed and left untreated for so long was because my stroke was so highly unusual. And now I’m reading testimony from 1970 that says they knew strokes in young women on hormonal birth control occurred this way. Over forty years ago, these risks (and many more) were identified and, for the most part, ignored. Here is some of his testimony:

“It has been thought for a great many years that spontaneous cerebral vascular accidents are quite rare in healthy, nonpregnant women, especially the younger ones.”- Nelson Pill Hearings, page 6137

So seeing an increase in these should tell us something…

“Further, it was rapidly found, which was embarrassing, I think to all of us, that we did not have a really accurate idea of the incidence of spontaneous cerebral vascular accidents, spontaneous strokes, in young, healthy, nonpregnant women. We did have some comparable information comparing incidence in women with that in men.” -Nelson Pill Hearings, pages 6137-6138

This really isn’t surprising given that women were often excluded from medical research and are still vastly underrepresented in clinical trials.

“In looking at this group of strokes, it seems their time of onset is often prolonged, for days, and even weeks. In a considerable portion of the cases, the onset was marked by premonitory migrainous headache. The patient may have attacks of double vision, they may have transitory weakness in various parts of the body, which recovers for a time: they often report giddiness and fainting attacks, and this finally develops into a full-blown stroke.”- Nelson Pill Hearings, page 6140

These symptoms are almost identical to mine.

He goes on to say that these types of strokes do not appear to be related to arteriosclerosis (hardening or thickening of the arteries) or hypertension (high blood pressure), two normal precursors for stroke. I also had neither arteriosclerosis, nor hypertension.

“So I think it is possible that such premonitory symptoms for days or weeks before the full-blown stroke develops may be a reason for assuming a seeming association with the pill.”- Nelson Pill Hearings, page 6140

Expletives and Indignation

Needless to say, when I got to this testimony, I let fly several loud expletives that served no purpose but to release a decade of frustration and scare my dog. This was 1970! My stroke was in 2006. Where did this information get lost? Why didn’t my doctors know to check for stroke when I presented with an ongoing headache and transitory weakness? Maybe my OB-Gyn wouldn’t have thought I had a migraine and a pulled muscle. Maybe the doctor at the local health clinic wouldn’t have suggested an appointment with a neurologist a week later. Maybe I wouldn’t have been sent home from the emergency room twice. Maybe I wouldn’t have had to suffer the fear and pain of massive seizures. Maybe I wouldn’t have had to relearn how to tie my shoes and relearn how to walk and relearn how to do math.

And as if reading a near-textbook list of my stroke symptoms that no fewer than four doctors misdiagnosed wasn’t maddening enough—the very next doctor to testify at these hearings, Dr. J. Edwin Wood, said the question of whether strokes are caused by hormonal birth control is debatable. He goes on to say that there is “a definite hazard to life while using these drugs because of the side effect of causing blood to clot in the veins” (Nelson Pill Hearings, 6156). Now, I’m definitely not a doctor, but I do know that the majority of strokes are caused by blood clots. More cursing ensued.

So where does this leave us? For my part, I’m going to keep digging. And I’m going to keep telling you what I find.

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This article was published originally on April 18, 2016.

Shattering Myths: Birth Control and Blood Clots Study Early Results

by Philippa Bridge-Cook, PhD

Published on June 2, 2016

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Lucine Health Sciences and Hormones Matter launched an important new research project one month ago. The Real Risk Study: Birth Control and Blood Clots is a multi-phased project designed to assess the breadth and depth of blood clot risks and other side effects associated with hormonal birth control. The current phase of the research involves collecting survey data and case reports from women who have suffered from blood clots while using hormonal birth control. Although data collection is still in the early stages (we have data from 42-50 participants, depending on the question), some important trends are already beginning to emerge.

Are Newer Users Really More At Risk?

One of the statements often made in medical publications, and even stated in the pharmaceutical companies’ own package inserts, is that the risk of developing a blood clot on hormonal birth control is the highest among new users or those restarting (within the first year of use or re-use). In our study, we are asking the question “How many total or cumulative months or years had hormonal contraceptives been used prior to the clot?” In our preliminary data set of 50 women, only 22 percent developed blood clots within the first year of use. The majority of women, 78 percent, developed blood clots after the first year. From our data, it does not seem true that the risk of blood clots is highest within the first year of use.

Seventy-Eight Percent of Hormonal Birth Control Induced Blood Clots Develop After One Year

Birth Control and Blood Clots: Preliminary Results

We further analyzed the data set to refine our understanding of when blood clots were developing relative to length of time on hormonal contraceptives. The chart below shows the percentage of women in our preliminary data set that developed clots after various lengths of time. The size of each box is proportional to the number of women in that group. Because the data is preliminary, and the number of women in each group is still small, we cannot really compare the sizes of the groups to each other until we have more data. However, we can say that women are developing clots after a wide range of time on hormonal contraceptives, even after up to 21-30 years on the medication.

Hormonal Birth Control Induced Blood Clots Develop More Frequently in Years 1-10

Birth Control and Blood Clots: Preliminary Results

Cigarette Smoking as a Risk Factor for Blood Clots

We are also asking survey questions about known risk factors and possible risk factors, to try to get a clearer picture of all of the factors contributing to a woman’s risk of a blood clot while on hormonal contraception. Cigarette smoking is known to increase the risk of developing a blood clot, and it is referenced in the package inserts that come with birth control pills. In the information for Yaz, the most popular birth control pill in the U.S., the warning states:

WARNING TO WOMEN WHO SMOKE: Do not use YAZ or Beyaz if you smoke and are over age 35. Smoking increases your risk of serious side effects from the Pill, which can be life-threatening, including blood clots, stroke, or heart attack. This risk increases with age and number of cigarettes smoked.

However, it has been pointed out that the risk communication by pharmaceutical companies in these inserts employs language that is misleading about the true level of risk, and the message most women who read the inserts come away with is that if they don’t smoke and are not over age 35, they are not really at risk.

In our survey we are asking the question: “Were you a smoker at the time of the blood clot(s)?” So far we have collected data from 42 participants for this question. In our data set, 79 percent of women who suffered from blood clots while on hormonal contraception had never been smokers. Another 12 percent had smoked previously, but were not smokers at the time of the blood clots. Altogether, 91 percent of women in our study were not smoking at the time when they develop the blood clot(s). This means that women cannot be confident that they are not at risk just because they do not smoke.

While these results are very preliminary and will have to be confirmed with the larger sample pool and the additional validation studies we anticipate, the data collected thus far seem to suggest that risks described by the industry do not correspond to the reality of what women experience. Although some women develop clots soon in the weeks and months after initiating hormonal birth control, the vast majority do not. Similarly, although smoking is certainly a risk, not smoking does not equate with lack of risk. So what causes the blood clots in some women and not in others? That is what we are trying to determine with this study.

Birth Control and Blood Clots Is about the Chemistry

We know from the basic chemistry that hormonal contraceptives skew coagulation factors in favor of blood clotting in all who take them. The research on this is pretty clear. These synthetic hormones increase the coagulation factors by 170%, almost three times their normal levels. Simultaneously, hormonal contraceptives decrease the anti-clotting cascades by 20%. This alone is sufficient to create blood clots and yet, not all women who take hormonal birth control develop clots or develop them very quickly. In some cases, it is years before the clotting becomes problematic.

What causes some women to develop clots soon after starting hormonal contraception, versus those who develop clots after many years? What causes some women without any known risk factors to develop massive DVTs and/or massive bilateral pulmonary embolisms, and die in their twenties? Is it determined by genetics, by medication interactions, by lifestyle variables, or by various combinations of risk factors? We do not know. No study to date has been sufficiently comprehensive to determine those risks. The Real Risk Study is.

Participate in Research

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

by Kerry Gretchen

Published on May 31, 2016

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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.

What Everyone Needs to Know About Hormonal Birth Control

by Laura Femia Buccellato

Published on May 23, 2016

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My only child, Theresa, came to me a month before her sixteenth birthday and told me she had sexual intercourse for the first time. I was not happy about it, but I was very happy we were close enough that she knew she could come to me about it. I spoke my mind about how I felt she was too young, but I also knew deep down my words would not prevent her from having sex again. Theresa asked about going on the birth control pill. I had been on the pill in my 20’s and had no side effects from it. I told her I would make an appointment with my OBGYN that also delivered her, and we would discuss the options with her first.

Starting the Birth Control Pill

Theresa had an exam by the doctor and then I joined them in the doctor’s office to discuss birth control. Our doctor mentioned the pill first. My first reaction was to ask about other contraceptives but the doctor felt the pill would be the best for Theresa. She said she would put her on one of the lowest dose pills, called Ortho-Cept. I was aware of some of the side effects of the pill like gaining weight, blood clots, and danger if you smoke (Theresa did not smoke). 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. She also was aware of my family medical history and that my mother had a stroke at 32 years old.

Theresa was on the pill for a month and a half and never complained to me about it. On August 15th, 2010, Theresa and I spent the whole day at the mall putting the final touches on her Mardi Gras Sweet 16 party. She was having her party in October instead of her birthday month in July because she wanted all her friends back from summer vacation so they could attend. Theresa always dreamed about her sweet 16 party; it was the day she felt she would be a princess and her start of becoming an adult. That night after shopping we stayed up all night ordering the masks for her Mardi Gras party. When I went to bed that night I had no clue our lives would end the very next day. That instead of watching my daughter’s dream party happen, it would be a memorial concert on her party date instead.

The Day that Changed our Lives Forever

August 16th, 2010 started out as a normal day. I woke up and got ready for work. Theresa was still asleep so I did not wake her to say goodbye. Around 1:00 in the afternoon she called me at work to ask if she could go out with two of her friends. I said yes and that her dad or I would pick her up at 9:00 PM. I told her I love you and we hung up. Those were the last words ever spoken with her.

Her dad decided he would pick her up that night. I remember just getting out of the shower when my phone rang. It was her dad telling me Theresa was sick and he had called an ambulance. I did not even wait for details; I got in my car and headed to the pizzeria he told me they were at. We later found out that Theresa had complained of a headache about an hour before the ambulance was called, and then became delirious, and vomited. I was there within 10 minutes and saw a huge crowd outside the pizzeria along with an ambulance. I rushed into the pizzeria and saw Theresa on the stretcher out cold. I remember looking around the pizzeria and it being packed with people. As soon as we got into the ambulance I saw the paramedics rip open Theresa’s shirt and start CPR. I was in a daze and in shock. I had no clue what was happening, but I knew I was losing my child.

When we got to the hospital the doctor on call continued CPR and made my ex-husband and I leave the room. A couple of minutes later the nurse came out to tell me to come in and hold her hand. I already knew Theresa was gone. The doctor then had me go out of the room and told us Theresa was gone. He said her pupils were not dilated, and there was no indication it was caused by any kind of substance. That I already knew: Theresa hated drugs and did not do them.

I remember walking back in the room to be with my daughter. She was lying on the table with her eyes wide open. I will never forget that picture. Theresa had the most beautiful green eyes and she was so proud of them. I remember blurting out I wanted to donate them. Everything after that is a total blur. My 16 year old daughter was dead and I had no clue why. She was a very healthy, athletic, young girl. I always thought we were blessed because if I took her to the doctor more than once a year for feeling ill, that was a lot.

I called our OBGYN the next day to tell her Theresa died. I still had no thought in my head that the pill had anything to do with her death. I actually thought she had an aneurysm because her friends said she complained about a headache an hour before she died. Two days after her death our OBGYN called me that the autopsy results were already in. She said Theresa died from a blood clot that burst in her leg and caused a pulmonary embolism.

Factor V Leiden, The Risk Factor that We Were Not Aware Of

I was then told Theresa had a blood clotting disorder called Factor V Leiden. Dr. Melgar told me that everyone in my immediate family and my ex-husband’s immediate family had to be tested for it because this disorder is genetic. She told me a simple blood test would determine if anyone in the family carries this disorder. I immediately went and had blood work done and found out I have Factor V Leiden also. Theresa got it from me, and I never even knew this disorder existed. My sister had her four children tested for it and two of her children turned out to be positive. My nephew has it and one of my nieces has it from both her parents, which is very serious.

I started doing research on this and that was when I found out the pill Theresa was put on was not the same kind of pills I was on in my 20’s. Hormonal contraceptives now have different types of progestins in them, and classified into second and third generation pills by the type of progestin. Women using third generation progestins have an even higher risk of developing a blood clot than women using second generation progestins. I also learned if Theresa had a blood test before she went on the pill, the doctor would have known about her having a blood clotting disorder, and she would have never been allowed on any kind of birth control.

After reading all this I drove straight to the doctor’s office to find out why the blood test was never mentioned. Dr. Melgar explained to me that the medical opinion is that blood clotting disorder is rare and insurance companies will not pay for the blood work so doctors do not mention it to their patients. She did not even give us the option to pay for it out of pocket. The insurance companies feel it is not cost effective to run this test on people going on birth control cause only 5-7 out of 10,000 die from it.

A simple blood test (that I would have paid for) would have saved Theresa’s life. Instead, she died from this. Theresa’s life, to the medical and pharmaceutical industry, did not matter. She is now just a statistic to them. For Theresa she lost her life, her future. She was a promising young woman that wanted to either become a veterinarian or work as a social worker with Project Children. She wanted to make a difference in this world.

As for her father and I, we might be living, but we are both dead inside. We lost the only important person in our life. We will not see our daughter graduate from college this year, get married, or ever have any grandchildren. The medical/pharmaceutical industry stole everything from Theresa and us, just by not mentioning a simple blood test.

Since Theresa’s death I have been trying to spread the word to others about this blood test. I am not against birth control at all, but I am against the facts not being revealed. I feel people need to know about this blood test. In Theresa’s memory I will tell people about this test over and over again. Many people I have talked to have had this test done after hearing of Theresa’s death. So many people have turned out positive for Factor V Leiden. I have come to find that this disorder is not as rare as the medical industry wants us to believe it is.

Actually talking to different doctors, I have found they are very ignorant about this disorder, and they have not been educated about it. It is up to us to fight for this blood test and make it mandatory for all females to be tested for it. Unfortunately a lot more people will probably die before it does become mandatory. I am hoping by telling Theresa’s story, this will bring awareness to others. Please insist on the blood test if you or anyone you know is going on any kind of hormonal birth control. Being a carrier (having one mutation, instead of two) also increases your risk of having a blood clot.

You need to watch all signs in your body for complications. Have you had many miscarriages? A swollen leg, that’s painful, red, and warm to the touch? Trouble breathing? These are all signs that you might have this disorder or a danger sign about your birth control. The number of people having strokes, pulmonary embolism, and dying have been increasing every year and the third generation birth control pills are contributing to this problem. The medical industry no longer cares about saving lives. They have teamed up with pharmaceutical companies to get as many profitable drugs on the market so they can benefit from it, instead of patients benefiting from it. They need to be stopped and only we can do that with our voice being heard.

Since Theresa’s death I have met many other parents that have lost their children to birth control and we are all trying to spread the word together. In conclusion, if one person’s life is saved from sharing Theresa’s story, then at least her death will not be in vain. I miss my child every second of every day. I lost my future, my best friend, my child and WHY? Because the medical industry felt she was not important.

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

by Kerry Gretchen

Published on May 5, 2016

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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.

A Stroke From Hormonal Birth Control: Part 3

by Kerry Gretchen

Published on March 31, 2016

2925 views

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. For more of this story, see Part 1 and Part 2.

Trying to Look Normal

One of my final tests in outpatient rehabilitation was to walk around town without falling down or getting lost. The day I passed that test was also the first day that I went somewhere in public by myself. It was a Subway and I stood in line, my heart pounding. I stared up at the menu to keep from looking around me, trying to ignore the sensation that everyone was staring at me. I was also desperately trying to remember how to order things, pay for things, and appear normal. In my head, I practiced ordering my sandwich over and over. I felt like if I made even a tiny mistake that everyone would be able to tell how broken I was, like they could somehow see the brain damage. I’ve never forgotten that feeling and for a long time I was afraid to tell people about the stroke, scared they would look at me differently. But really I was the one who looked at myself differently. I saw myself as broken. Like my body had failed me. And for a long time I didn’t trust my body.

Living With Fear

What no one tells you about life after something like a stroke is the ongoing fear. I’m going to be on blood thinners, which increase my risk for bleeding out, for the rest of my life. The first time I cut myself, I thought I might die. Panic overtook me and I started sobbing, a paper towel clutched to my finger, too afraid to look at the damage. When I finally peeked and found it was just a nick, I felt like an idiot. But I still avoid melons and gourds, instead buying my butternut squash pre-cut. Just in case.

The first time I had a cold, I thought my sinus headache might be another stroke. The first time I pulled a muscle, I thought I might have a DVT (deep vein thrombosis). The first time I had an asthma attack, I was scared I had a PE (pulmonary embolism). If I hit my head on something, which I’m prone to given how klutzy I am, I would wonder if I might suffer another stroke. After all, the doctors said that once having suffered a stroke, my risk for another was that much greater. At least 25-35% of stroke victims suffer a second. Recurrent strokes often have a higher rate of death and disability because parts of the brain already injured by the original stroke may not be as resilient.

Stressing About Stress- Oh, The Irony!

But those aren’t the only things that scare me. I also worry about stress. When I had the stroke, I was newly married and had moved away from my family for the first time so that my husband could attend graduate school. Before we moved, I had a challenging and exciting career, an identity, and a network of friends and colleagues in a large, diverse city. The small college town in the deep south felt like a foreign country—one where I was known only as “Josh’s wife.” When I had the stroke, I had no close friends and for the first time since I was 16 years old, I was unemployed and having no luck finding work. I was under more stress than I had ever been at that point in my life. Until now.

In the past six months, I’ve been going through a tremendously stressful period. I’ve been tested not by one of the major life stressors, but several at once. And I only recently realized that part of the overwhelming anxiety associated with these situations is the nagging fear that my body “fails” me when I am under so much stress. I’m terrified that I might have another stroke. Because now I actually know what having a stroke means. It means more fear, frustration, stress, self-doubt, identity crisis, feeling helpless, being helpless—and that’s only if you survive.

Getting Off the Blame Train

The on-going message from my doctors, armed with studies funded by the drug manufacturers, was that I was an anomaly. That what happened to me almost never happens. So I figured I must be weaker than other women. My body couldn’t handle birth control pills when millions of other women have no problem with them. At least that’s what the pharmaceutical companies want us to believe.

The consequence of that line of reasoning is that I blamed myself, something I didn’t even realize until I was in a yoga class last year.

When my teacher said, “Forgive yourself for something you think you did wrong,” I wondered what that might be. Then a voice came to me very clearly. “You blame yourself for your stroke,” it said. I sat with that sentence and turned it over in my head, looking at it from all directions. I did blame myself. And I had been blaming myself for nearly 10 years.

I thought writing my thesis had helped close the chapter on what happened to me. But somehow it only reinforced the narrative that I was weak and couldn’t trust my body. Really, I had been living in fear and babying myself for nearly a decade. After class, I made my way to my car, buckled my seatbelt, and cried all the way home.

The repercussions of having a stroke at 28 caused by hormonal birth control and a common clotting disorder still affect me today, in big decisions and little ones—from switching to a new blood thinner (so I no longer have to give myself shots) to wearing a helmet while biking around my neighborhood (since I can’t really afford another brain injury). I may have to live with the fear of having another stroke and the fear of bleeding out. I may have to get my blood checked every six months, wear a medic alert bracelet, use compression socks. But I don’t have to blame myself. The stroke was not my fault. I was failed by a greedy pharmaceutical industry, a society that values profit more than human life, and an overworked and under-informed medical community.

A New Story

I’ve learned that we are the product of the stories we tell ourselves and I have been telling myself the wrong story. I was not failed by my body. I was not weak because I had a stroke. The real story is that I am strong. Unbelievably strong. My body survived a stroke. For a month! My body survived being given medication that should have killed it. My body survived being sent home from the emergency room twice, massive seizures, clots, bleeding, and brain damage. My body recovered. And I am thriving. I am not weak. In fact, I’m stronger than ever and I’m ready to finish the work that I started back in graduate school. I’m ready to stand up and fight for the health and safety of women. And I’m not alone.

These first three articles are just the beginning of my research and exploration of the dangers of hormonal birth control, as well as other women’s health topics. I hope you’ll keep coming back to learn and share what I’ve found. Because despite what the pharmaceutical companies want us to believe, we ARE strong. And we are even stronger when we work together.

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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1. “Hold this.”

2. “Lift your leg.”

3. “Write this down.”

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

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

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Trying to Look Normal

Living With Fear

Stressing About Stress- Oh, The Irony!

Getting Off the Blame Train

A New Story

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