pulmonary embolism birth control

Death by Hormonal Birth Control: Countless Stories

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When you write about hormonal birth control, it becomes a sort of self-perpetuating torture. Women who have been injured frequently reach out to share their stories with you, and it never stops being painful. Each story pierces your soul as they recount their devastating experiences related to The Pill.

How could your heart not ache as you speak with a young woman who used to be healthy but now awakens to pain every day? Some deal with the fear of knowing their liver adenoma could rupture at any moment, and they would die instantly. Others wake up knowing the chronic pain of an autoimmune disease will be with them until their final days.

Their lives look very different than they imagined as little girls. Even the act of telling their story brings new pain to the surface, but there is also a redemptive quality in sharing their story. These women are warriors. They continue to battle against the permanent damage done to their bodies. And, despite the pain it causes, they share their stories because they want to warn other young women about the real dangers of hormonal birth control.

Shattered Families

Perhaps the only thing more devastating than their stories are those of families whose sisters, wives, and daughters lost their lives to birth control. Imagine losing your young daughter to blood clots. You never even entertained the idea that she could die before you, but suddenly she’s gone without warning.

THAT is unspeakable pain.

Thankfully, there are families who fight through the pain and muster up the strength to talk about it. Once again, they do it out of the very selfless desire to warn others. I have been blessed to meet many of these families on my birth control journey. Some of them have shared their stories publicly. These stories embody the reason women need to be warned about the real risks. I encourage you to seek out their stories and read them.

Here are a few of them: 

Next Level Shock

By reading and hearing these stories, we can only grasp a small taste of how agonizing it must be to lose a loved one who was so young and vibrant. For me, the stories feed my passion to help spread the word about the dangers that are not being fully presented. The individual twists and unique aspects of each story, each family, each woman stir my motivation in different ways.

I would like to share another story I recently came across that left me feeling gut-punched unlike any other. 

A Dark Day in the Black House

Raymond Black knew that his wife, Betty Jo, had not been feeling well as he traveled back to Indiana from a business trip. Still, he was surprised to find his mother-in-law taking care of their five young daughters when he arrived home from the airport. He had expected that the shot the doctor gave Betty Jo would be taking effect by now and her flu-like symptoms would be getting better. Instead, his wife was feeling even weaker. 

By the next morning, the situation had declined to the point that Raymond drove her to the Emergency Room at St. Joseph’s Hospital. The doctor reviewed her tests and chest x-ray before assuring the couple that it was nothing more than an “influenza type of bronchitis.” He sent them home with an antibiotic prescription and instructions to rest.

For the remainder of the day, Betty Jo writhed back and forth in bed. Raymond felt hopeless as she described a burning feeling in her chest and back. Then, around 8:40 pm, she grabbed her chest and wheezed, “I’m having trouble breathing – get an ambulance!”

Her ER doctor from earlier that day, Dr. Dolezal, said they would have a “Code Blue” team awaiting her arrival. She coughed and convulsed the entire trip. Riding in the ambulance, Raymond held the oxygen mask as the EMTs had instructed, but still felt helpless as he watched Betty Jo pass out.

Once at the hospital, doctors and nurses worked feverishly. Her brain wasn’t getting enough oxygen. An internist pushed a tube down her windpipe, another counted out loud as he compressed on her breastbone. This exhausting scene continued for what must have seemed like an eternity until Dr. Dolezal eventually pulled Raymond to a quieter area of the ER at around 10:55 pm to tell him his wife wasn’t going to make it.

Stunned and Confused

Raymond was stunned and confused. He was quite sure the mild bug that his children had passed around could not have killed his healthy 29-year-old wife. In the eight years they had been married, Betty Jo had only been treated by a doctor for two sore throats and irregular periods. 

For the latter, her doctor suggested hormonal birth control to help regulate her cycle. Being Roman Catholic, Betty Jo felt uneasy but sought permission from her priest before taking the synthetic steroids as a medical treatment.

She was the very definition of a healthy young woman, but something changed – something that literally decimated her health within just a few short days.

The weight of the world suddenly rested on Raymond’s shoulders. He was still the supervising engineer at a hectic workplace overseeing the biggest project in his company’s history. His five daughters were all below the age of seven, and were mourning the loss of a mother they loved dearly. Yet, while trying to maintain an impossible balance between work and home amongst all this turmoil, his engineering mind could not stop trying to piece together what could have killed his beautiful bride.

When the autopsy report came back, the first jigsaw piece fell into place and the mystery began to unravel. The report said Betty Jo died from a “large, solid blood clot that had formed in her right ovarian vein and passed through the heart before lodging – and closing – the pulmonary artery leading to the lungs.”

Unraveling the Mystery

Recognizing that The Pill’s primary function is to prevent a fertilized egg from leaving the ovaries, Raymond felt like he had just made eye contact with the primary suspect.

You might think it would be a pretty easy process to connect the dots at this point. There is no shortage of data supporting the link between hormonal birth control and deadly blood clots. But, there is another important fact that added to the difficulty of Raymond’s situation. This entire episode happened in 1965.

At that time, all the voices of authority, from the FDA to the media to local doctors were saying The Pill was completely safe. However, it didn’t take long for Raymond to find a doctor in South Bend who, after reviewing the autopsy report, admitted he personally knew of two patient deaths and another patient who almost died that he attributed to The Pill. However, he feared that he could be sued for contributing to the death of those patients, and said that he would not be able to testify for any pending legal proceedings.

Raymond persisted, combing through newsletters and letters to doctors from the drug companies. He found a newsletter from Searle that revealed: “As of this date in the United States there have been reported to us 272 cases of thromboembolic disease in Enovid users. In these reports are 31 fatalities.”

The newsletter detailing their knowledge of this complication had been printed two years before Betty Jo started birth control.

Pause and Reflect

This hurts.

This really hurts.

For two years, they knew about the clotting issues, but Betty Jo didn’t. In fact, all Betty Jo did was become another statistic. The general public continued believing The Pill was completely safe. It would be another three years after her death before the British Medical Journal would begin to blow the lid off their cover with the Inman-Vessey study. 

That study focused on another blood clot-related outcome. It demonstrated that young women taking The Pill experienced a 7.5-fold increased risk of death from a stroke. Who knows how many others died when their clotting blood led to a pulmonary embolism as had Betty Jo’s.

Too many… whatever the number. 

Think how different things could have been if the drug companies or their regulators had taken appropriate action when this news came to light. Think how many parents, husbands, and children in the 1970’s alone could have been saved from the devastating aftermath of losing a young woman they loved. Now, add on the lost lives and grieving relatives of each subsequent decade. My God, the carnage mounts exponentially.

That’s 60 years of dead women – 60 years of regulatory inaction – nearly 60 years where something could have been done that might have saved the women whose families’ stories I shared above. 

That’s why this story knocked the wind out of me.

Evidence Mounts

But, it took another newsletter to really trigger Raymond’s rage. He could not believe it when he read that researchers had identified that women with a tilted uterus might be “predisposed to thrombosis” when they used hormonal birth control.

Betty Jo had a tilted uterus. Combined with her misgivings about The Pill, this little bit of information could have been enough to convince her not to take it, and could have ultimately saved her life. Instead, the only “warning” she encountered in the information pamphlets from the manufacturer said that some women experienced temporary nausea and breast tenderness.

Raymond was convinced the drug companies were downplaying the risks. He consulted a couple of attorneys who warned him that his chances of winning a lawsuit were highly improbable. They reasoned that the drug companies would have an endless supply of physicians and researchers with financial ties who would be willing to testify on behalf of The Pill, while he would be able to offer little more than hearsay as evidence.

Unfazed, Raymond filed a suit for $750,000 in damages against G.D. Searle & Company on the second anniversary of Betty Jo’s death. He told the press, “I don’t care if I win the case or not. I want this underreporting out in the open.”

Is There a Doctor in the House

Contrary to the previous attorneys’ opinions, Raymond was able to locate numerous doctors eager to testify about their concerns surrounding hormonal birth control. It turned out that not every doctor operated purely on financial motivation. The trial garnered a lot of attention because it marked the first time the division in the medical community came to light, and it was happening in such a public forum.

One of the most adamant physicians to testify on behalf of the Black family was Dr. John F. Hillabrand, Director of Obstetrics and Gynecology at St. Vincent’s Hospital in Toledo. After Dr. Hillabrand emphatically stated that he believed The Pill had been the cause of Betty Jo’s death, the attorney for Searle, James Pankow, tried to undermine his credibility by suggesting Dr. Hillabrand hadn’t published many articles in leading medical journals.

Dr. Hillabrand shot back that he had never worked for a medical school that sought grants and published papers just to stay in business. Rather, he stated, “I have delivered eight thousand babies and not lost a mother, and I’d kind of like to keep it that way.”

He went on to describe the changes he had personally witnessed as a surgeon since women started taking The Pill, specifically the effects from the blood’s artificially slowed circulation and enlarged “veins in the genital organs and chest so that the blood congeals, much the same way that water freezes in a leisurely flowing stream.” When Mr. Pankow called into question the veracity of this claim, Dr. Hillabrand retorted, “…had you been in the operating room with me on any number of occasions when you tried to perform major surgery – either vaginal or abdominal – on some of these people, you will have the most exciting time trying to control bleeding because of the dilation [expansion] of these vessels.” He went on to explain that he had actually started the practice of having women stop taking The Pill to “simmer down” before performing such procedures.

In one final attempt to mitigate Dr. Hillabrand’s contempt for The Pill, Mr. Pankow pivoted, “Obviously, you will admit that there are competent gynecologists and obstetricians who prescribe The Pill for contraceptive purposes.”

Dr. Hillabrand replied, “No, I will say they do it, but to the extent they do it, in my opinion, their competence should be questioned.”

The Verdict

Anyone who had ever had any issues with The Pill or knew of anyone who had was removed from the jury pool during the selection process along with anyone who professed any preconceived notions about birth control. So, when it came time for deliberation, Leroy Skodinski, the lumber salesman who was ultimately elected to be the jury foreman, and the other jurors, who came into the trial knowing nothing about birth control, struggled with interpreting all the competing medical arguments they had heard.

When they discussed whether Searle had been negligent, the conversation kept coming back to the fact that the company was now warning doctors about side effects, but they wondered how many doctors were actually telling their patients. Mr. Skodinski pointed out that when Betty Jo died four years earlier no one was being warned.

Ultimately, the jurors agreed that they could not say that The Pill had killed her “beyond the shadow of a doubt,” nor could they hold the drug company responsible for the stronger evidence tying their drug to blood clots that came out after Betty Jo’s death. Still, they felt uneasy about the company’s history of downplaying the risks to doctors and the women taking the drug. So, they agreed to a compromise.

Back in the courtroom, Mr. Skodinski read the verdict finding for the defendant on all charges, but everyone was shocked when he continued reading, “Further, it is the recommendation of this jury that, effective immediately, G.D. Searle and Company, in instruction literature both to doctors and patients, advise the dangers of the possibility of phlebitis, thrombotic, and embolic phenomena.”

The judge sternly informed the jury that this was not how the system works, and their stipulation could not be enforced. The court records simply show that G.D. Searle was exonerated, period. In reality, the jury who exonerated them walked away knowing the system had failed the victims.

No One Answered the Wake-Up Call

In so many ways, this is a fitting ending to this moment in time. Betty Jo’s death and her husband’s tenacious fight woke some people up. Their story may have inspired a few more advocates to jump on board. Even the media started paying attention as this was the first time anyone questioned the mighty Pill. You can find a detailed account of Raymond and Betty Jo Black’s story in Good Housekeeping, January 1970.

But, in the end, as so often happens, the drug company walked away virtually unscathed. Soon, things returned to normal and most people stopped paying attention again. For starters, whatever happened to the whole tilted uterus thing? I have been unable to find any continuing research on this important detail.

I still have hope. Each time the drug companies are challenged like this, more people wake up to their game. Raymond may have lost the case, but he did raise eyebrows simply by bringing the underreporting out into the open. He succeeded at his stated goal.

I am all about celebrating the small victories, but at the same time, I can’t help but wonder how much progress we have really made in educating women about blood clots from hormonal birth control – not to mention any of the other truly dangerous side effects. Are we any further along than when Betty Jo died 60 years ago?

Postscriptum

Not long after I finished the first draft of this article, a woman in the Facebook group I started to encourage discussions about birth control posted this query:

Got a question about leg swelling that won’t go down but literally gets bigger, severe dizziness, blurry vision that’s getting worse, back pain on lower right, severe anxiety and panic attacks… I have the Nexplanon and wondering if it’s related.

We still have a lot of work to do, but the more we can encourage open communication about birth control the better chance we have of saving the life of the next woman.

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Medical Dismissal: Pulmonary Embolism on the Birth Control Pill

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

The Start of Symptoms

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

Dismissed and Misdiagnosed Twice by Medical Professionals

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

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

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

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

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

Diagnosis of Pulmonary Embolism

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

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

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

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

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

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

Recovery and Ongoing Risks

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

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

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

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

Real Risk Study: Birth Control and Blood Clots

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

Pulmonary Embolism after 10 Years on the Pill

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I’m a 27 year old woman who was diagnosed on March 18, 2016 with blood clots in both lungs and a pleural effusion in my left lung. I’ve always been pretty active, and enjoy running, hiking, HIIT, spin, and yoga, among many other activities. I have never had any major health issues or been hospitalized. I’ve never even broken a bone before, so having a problem this serious came as quite a shock to me.

I’ve been taking oral contraceptive pills since I was 16. I started with Tri-Cyclen Lo, and was on that up until a couple of years ago when I switched to Alesse. Most recently, I switched to Alesse’s generic brand, Alysena 21, in order to save money on my prescriptions and had been on those pills for about a year before my pulmonary embolism.

I had been experiencing some pain in my back/chest for a couple of days prior to my diagnosis, which got worse when I lay down. I thought I just was experiencing really bad heartburn, as I had previously seen my doctor complaining of heartburn and she prescribed some stronger medication. The fact that the pain wasn’t going away even after trying to take the medication made me a bit concerned.

On the second night when I tried to sleep, I had severe pain in my upper back and left side of my chest, which started to radiate up to my neck and left shoulder. I also experienced more pain in my chest if I tried to inhale deeply. It almost felt like I just needed to breathe deeper and I would get relief, except it never came. The only way I could possibly lie down was on my stomach with my left arm hanging off the bed, and even then it hurt a lot. My fiancé suggested that it might just be a pulled muscle, but I finally decided that something wasn’t right so I went to emergency.

Once I got to the hospital, I explained my pain and then had an EKG, chest X-ray and blood work done. My D-dimer blood test showed that I had a high risk of blood clots, and my X-ray showed fluid in my left lung. They then scheduled me for a CT Scan, which I had to wait many hours for. I was given a Percocet to help ease the pain and I tried to lay down while I waited for the CT Scan. After getting the scan done, the doctor told me that I had blood clots in both my lungs and a pleural effusion in my left lung.

I was shocked and didn’t really know how to process the information. My mom, who is a nurse, was with me and she seemed worried as well. After speaking to a bunch of different doctors, and waiting around to see a few specialists, I was finally given a prescription for Xarelto, an anticoagulant, and sent home to rest.

The days and weeks following were pretty difficult. I felt useless, and for the first few days it was a struggle to even walk around my neighborhood. I had extreme shortness of breath, and walking around made it a lot worse. It also still hurt to lie down for the first few days, so I was pretty uncomfortable and tired.

I had follow-up appointments with my family doctor, and was scheduled for more chest X-rays to monitor the fluid in my lung. Eventually the fluid went away after a few weeks, and I was slowly starting to feel like myself again. After about a month or so, I started trying to exercise again – starting slowly at first. I’m now almost back at the point where I was prior to the pulmonary embolism, and even managed a seven kilometer run this past weekend. I’m still on Xarelto, and will be for a minimum of 6 months. Once I stop taking that, I can be tested for blood clotting disorders, including Factor V Leiden.

For the past couple years I had been wanting to stop taking birth control, as it was an inconvenience to take a pill every day at the same time, and it just didn’t seem healthy or natural. However I never ended up going through with it, as I felt like I needed to be on them in order to avoid pregnancy. Now that I’ve stopped taking them because of my pulmonary embolism, I feel healthier and will never take hormonal birth control pills ever again. There are better options for birth control out there that don’t involve hormones and are much safer for your well-being. A few of my friends have actually decided to stop taking birth control pills after this happened to me. I hope to get the word out to other women about how potentially dangerous and unnecessary birth control pills are.

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.