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

Published on October 18, 2016

2524 views

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

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

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

“Of far greater concern to me is the failure of our governmental agencies to exercise their responsibilities in seeing to it that appropriate studies were carried out… Frankly, the required research, although important, is not especially appealing to scientists. It is not fundamental and it is not exciting. It is difficult, it is expensive, and it is fraught with the risk of attack from all sides.
Evidently, for whatever reasons, there is no sound body of scientific studies concerning these possible effects available today, a situation which I regard as scandalous.
If we proceed in the future as we have in the past, we will continue to stumble from one tentative and inadequately supported conclusion to another, always relying on data which come to hand, and which were not designed for the purpose.”

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

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

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

“The problems with Yaz and its sister pills stem from drospirenone, a fourth-generation progestin.
After years of blood clot reports, the U.S. Food and Drug Administration (FDA), reviewed studies on oral contraceptives and found that an estimated 10 in 10,000 women on newer pills will experience a blood clot versus 6 in 10,000 with older pills.
Another study conducted by the French National Agency for the Safety of Drugs and Health Products (ANSM) found that birth control pills were linked to more than 2,500 cases of blood clots annually between 2000 and 2011. But third- and fourth-generation pills were responsible for twice as many deaths as earlier pills.
Two studies appeared in the British Medical Journal in 2011 and indicated newer pills were two to three times more likely to cause blood clots.”

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

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

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

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

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

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

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

Heart Attack and Death While Using Yaz Birth Control Pills

by Dianne Ammons

Published on October 17, 2016

5195 views

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

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

Starting on Yaz

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

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

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

Dealing with Yaz Side Effects

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

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

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

High Potassium Levels Due to Yaz

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

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

The Week Leading up to Annie’s Death

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

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

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

Tragedies Caused by Hormonal Birth Control

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

Real Risk Study: Birth Control and Blood Clots

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

Birth Control and Breast Cancer: A Classic Cover-up

by Mike Gaskins

Published on October 12, 2016

2977 views

“Estrogen is to cancer as fertilizer is to the wheat crop.”

It was the first headline-grabbing quote from the Nelson Pill Hearings, and it threw birth control proponents into a tizzy. They complained vociferously that the hearings were alarming women everywhere, and causing them to stop taking The Pill. Senator Nelson’s reply was simple, if women had been warned about the side effects before being prescribed, they wouldn’t be alarmed hearing it now.

That one little quote about synthetic estrogens catalyzing cancer and the uproarious reaction it inspired epitomize the beauty of the hearings. It was one of the few times in recent history that the pharmaceutical industry had almost no control of the message.

Hormonal Birth Control: Fertilizer for Breast Cancer

Prior to the hearings, Big Pharma managed to suppress knowledge of their product’s link to certain cancers, particularly breast cancer. However, in the hearings, those connections came to light, and stunned viewers as they tuned into the nightly news. (Perhaps I should inform my younger readers that this was a time when our country only had three networks, none of which featured a 24-hour news cycle. Consequently, the nightly news was still a pretty big deal).

Here’s a breakdown of some key facts presented by leading physicians in those hearings:

The American Cancer Society recognized the possible risk of breast cancer as a side effect of hormonal contraceptives as early as 1961. – Dr. Max Cutler, Page 6664
It’s imprudent to prescribe oral contraceptives to a woman with a family history of breast cancer. – Dr. Max Cutler, Page 6666
There was statistical evidence that breast cancer associated with pill takers in the FDA files had been dramatically underreported. – James Duffy, Page 6069
All human carcinogens are latent. And, it could take 10 to 20 years of patient history to determine the cancer impact. – Dr. Victor Wynn, Page 6309
Not only had the synthetic hormones used in The Pill been proven to cause breast cancer in all five species of animals that had been injected with it, but it also caused the very rare condition of breast cancer in human males. – Dr. Hugh Davis, Page 5927
There should be no chronic use of The Pill. It is a cancer time bomb with a fuse that could be 15 to 20 years. – Dr. Max Cutler, Page 6669

The most important statement as it relates to us today came from Dr. Hugh Davis:

“Now, there are some 75 to 80,000 women in this country per year who are developing diagnosed carcinoma of the breast. If the chronic taking of steroid hormones eventually increased this by only 10 percent, we would have a very, very hazardous situation on our hands…” (Monopoly Subcommittee, Page 5931)

I know how easily our eyes can glaze over when someone starts quoting statistics, but please pay attention to these numbers. In 1970, 1 out of every 20 women developed breast cancer sometime during her life (Dr. Max Cutler, Page 6666). You just read that Dr. Davis said it would be ‘a very, very hazardous situation’ if we saw a long-term increase of 10% over the 75 to 80,000 diagnoses each year.

Today, we have witnessed a 210% increase; 1 in every 8 women will develop breast cancer in her life. Over 246,000 cases of breast cancer will be diagnosed this year. If the vastly underestimated 10% was considered very hazardous, then our reality hit a level of hazard that defies description.

Message Control

The hearings also pulled back the curtain on how the pharmaceutical industry manipulated the message to the media and the medical community.

In 1967, Child & Family Quarterly started a section called, “Recent Setbacks in Medicine,” which seemed to be largely inspired by the introduction of hormonal birth control. Here’s what they had to say:

The Pill quickly became big business, so that drug manufacturers began to manipulate professional opinion at an early date, stressing the wonders of the Pill and minimizing its dangers.

Speaking to this point, Sen. Nelson pointed out the conflicting statements of Dr. Louis Hellman, who chaired the FDA’s study on The Pill. He said:

I doubt whether there is one person, one doctor in a thousand in this country who is aware that [Dr. Hellman] said, “Now, in discussing the chairman’s report, the right statement has to be made. We cannot just hide behind rhetoric. We are going to have to say something, and we have an opinion; that these are not safe, and the Commissioner might have to take them off the market if he believes this. We can say these are safe and our scientific data did not really permit that kind of statement.”

The FDA committee’s official statement ended up being that hormonal contraceptives were “Safe within the intent of the legislation.” This strangely mitigated reference to Kefauver-Harris legislation was all the pharmaceutical industry needed because it contained the word ‘safe.’ Despite admitting they were of the opinion that The Pill wasn’t safe, Dr. Hellman then hit the media circuit to reassure women everywhere that it was.

Further evidence that Big Pharma was seizing control came in the testimony of Dr. Edmond Kassouf. He read the Senators an unnerving conclusion to a New York Times review of Barbara Seaman’s book, A Doctor’s Case Against the Pill. Reviewer, Christorpher Lehman-Haupt wrote, “One wonders why the drug companies have been so exercised about it. In a way, their attempts to warn book reviewers against it are more disturbing than the book itself.” To which, Dr. Kassouf responded:

Mr. Lehman-Haupt has performed a public service in exposing the drug companies’ attempts.

Cures Not Causes

At Big Pharma, manipulation is the modus operandi, but no example is more disgusting and deplorable than Breast Cancer Awareness Month. Yes, that is what I meant to say. Let me explain by first asking you a question. If an organization started promoting Lung Cancer Awareness Month but they never mentioned smoking, would you think there was something fishy in the air?

For all this search for the cure, there is no talk of avoiding the cause. There’s a good reason for that. Jim Hightower festoons the irony amusingly in his book, There’s Nothing in the Middle of the Road but Yellow Stripes and Dead Armadillos.

Breast Cancer Awareness Month is a front that was conceived, funded, and launched in 1985 by a British conglomerate with a name that could come straight out of a Batman comic book: Imperial Chemical Industries. But the $14-billion-a-year multinational behemoth is all too real. It is among the world’s largest makers of pesticides, plastics, pharmaceuticals, and paper. “Organochlorines R Us” could legitimately be its slogan, though “Pollution R Us” would also fit – one of its Canadian paint subsidiaries, for example, has been held responsible for a third of the toxic chemicals dumped into the St. Lawrence River.

In 1993, Monte Paulsen of the Detroit Metro Times wrote, “ICI has been the sole financial sponsor of BCAM since the event’s inception. Altogether, the company has spent ‘several million dollars’ on the project, according to a spokeswoman. In return, ICI has been allowed to approve – or veto – every poster, pamphlet and advertisement BCAM uses.”

ICI’s pharmaceutical division, Zeneca Group PLC later split off to become AstraZeneca, taking Breast Cancer Awareness Month with them. Kudos to Mr. Paulsen for digging into this. Most journalists who know about AZ’s ‘ownership’ of BCAM see the move as philanthropic. AstraZeneca can’t lose. They actually strategized a way to make breast cancer a win-win situation for their shareholders.

Jim Hightower continues:

It gets gooier. Zeneca’s pharmaceutical arm is also the maker of Nolvadex, the leading drug used in breast cancer treatment. Nolvadex is a highly controversial drug – it does not cure existing breast cancer, but it can help stop it from spreading in some women who are diagnosed early; however, it can also cause blood clots, uterine cancer, and liver cancer in those who take it… What a racket this company has going! It make billions selling industrial organochlorines linked to breast cancer, it finances its BCAM front to divert public attention from cancer causes to cancer detection, then it sells Nolvadex to those who are detected.

Industrial waste and toxic chemicals may be responsible for the spike in breast cancer; and synthetic estrogens may be the fertilizer that feeds it, but, ultimately, it’s Big Pharma that’s spreading the manure.

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Medical Dismissal: Pulmonary Embolism on the Birth Control Pill

by Leslie

Published on October 3, 2016

1998 views

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 “3^rd 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.

Diabetes: Another Problem With Hormonal Birth Control

by Kerry Gretchen

Published on August 29, 2016

2400 views

Diabetes is the 7^th leading cause of death in the United States according to the American Diabetes Association. Tens of millions of people have diabetes and are at increased risk for a whole host of other problems because of it. The estimated economic cost of diabetes is nearly $245 billion each year. BILLION! So shouldn’t we take a look at how to decrease these risks, lessen this economic burden, save lives?

I’ve done a lot of research on birth control pills, their side effects, and how those risks are communicated to women. My interest in the topic is both personal (I suffered a stroke from hormonal birth control at age 28) and professional. I’ve been reviewing the Nelson Pill hearings and what I’ve found is shocking. Beyond the obvious correlation between blood clots and hormonal birth control, even back in 1970 doctors and scientists knew that these medications affected, contributed to, and caused a myriad of health problems from weight gain to stroke. One of the most surprising to me, because I hadn’t come across it in any of my previous research, was the link between synthetic hormones and 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.”

For women with polycystic ovarian syndrome (PCOS), this is particularly troubling. They are already at an increased risk for diabetes. “Researchers in Australia collected data from 6,000 women and found that those who had PCOS were three to five times more likely to develop type 2 diabetes than women who didn’t.” Yet the first treatment doctors usually prescribe for PCOS is birth control pills. It’s unclear whether the PCOS alone increases a woman’s risk or just that most women with PCOS are treated with hormones that make her more likely to develop diabetes.

It begs the question, why are we treating a woman for a condition that increases her risk for diabetes with a drug that increases her risk for diabetes?

Even if you don’t have PCOS, you are still at risk. A recent study showed that “women who used hormonal methods of birth control had higher odds for gestational diabetes than did women who used no contraception.” So using hormonal birth control may prevent you from getting pregnant but at the cost of making a future pregnancy more dangerous? It’s not just dangerous for pregnant women, however. Hormonal contraceptives seem to predispose women to diabetes across the lifespan. For example, another study found:

“The prevalence of diabetes was significantly higher in post-menopausal participants who had taken OCs (oral contraceptives) for more than 6 months than in those who had never taken OCs. The duration of OC use was also positively associated with the prevalence of diabetes. Furthermore, taking OCs for more than 6 months led to a significant increase in fasting insulin levels and HOMA-IR in nondiabetic participants. Past use of OCs for more than 6 months led to a significant increase in the prevalence of diabetes in post-menopausal women, and increased IR in nondiabetic participants. These results suggested that the prolonged use of OCs at reproductive age may be an important risk factor for developing diabetes in post-menopausal women.”

This is further proof that taking hormonal birth control affects women for much longer than the duration they take it. A correlation between synthetic hormones and diabetes was evident to doctors and researchers back in 1970 and we’re still trying to understand those effects today. Dr. Hugh Davis testified (pg 5928) about hormonal birth control:

“While you are accomplishing your contraceptive objective you are producing very, very widespread and generalized changes.”

I’m starting to feel like a broken record here, but at what point are these risks not acceptable? And why do we still not fully understand these risks? The goal of the Nelson Pill Hearings was to determine if these medications were safe and they are clearly not. Over and over, experts testified and said the pill should not be taken off the market but that it should be studied more and replaced by something better as soon as possible. As we can see, that hasn’t happened. Women are still having to make the choice between convenient contraception and their health and safety. The risks involved with hormonal contraceptives are still being downplayed, skewed, and hidden. If a serious and potentially life-threatening condition like diabetes is not too high a price to pay to avoid pregnancy, what is? How about loss of libido? Mental health? Weight gain? Blood clots? Stroke? Loss of life? Dr. Davis also said (pg 5925):

“In using these agents (hormonal contraceptives), we are in fact embarked on a massive endocrinologic experiment with millions of healthy women.”

I couldn’t agree more. And the experiment continues.

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.

Photo by Sven van der Pluijm on Unsplash.

Blood Clots: What Women Know Versus What We Should Know

by Kerry Gretchen

Published on August 22, 2016

2903 views

I was on the birth control pill for ten years. I knew that it could cause blood clots in women over 35 who smoked. I wasn’t over 35 and I didn’t smoke. That was all I thought I needed to know. Then I had a stroke. It was caused by the pill and a genetic clotting disorder I never knew I had. In fact, I didn’t know there was such a thing as clotting disorders or that I could have one or that in combination with hormonal birth control, it could kill me. And I certainly had no idea what the symptoms of a blood clot were.

What Do We Know? Not Too Much, It Appears

When I began to do research for my thesis, I wanted to know if it was just me or if other women who took the pill were also unaware of clotting disorders and of the symptoms of a blood clot. Spoiler: I wasn’t alone in my ignorance.

I surveyed over 300 women who had taken birth control pills. Among other things, I wanted to know:

What did women know about the risks associated with the pill?
Were they aware of clotting disorders?
Did they know the symptoms of a blood clot?

Survey Results

Neither Women Nor Their Doctors Understand Risks for Blood Clots

The results of the survey showed that women do not clearly understand the risks involved with taking birth control pills. Many of them believe that certain risks are only associated with being over 35 years of age and/or smoking. This is not surprising given that only a little over half said their doctor discussed the risks with them before giving them a prescription. And for a majority of the women, their doctor never discussed other birth control options with them.

Most of the women were asked about their family history before being given a prescription, but fewer than half of their doctors actually discussed it with them, and fewer than a third of the women actually read the risk information that accompanies their prescriptions. That’s not surprising given how dense and misleading the pharmaceutical companies have made risk communication.

When asked whether they were familiar with the symptoms of a blood clot, most women (60.5%) admitted that they were not. Eight women responded that they had learned the symptoms because a family member or friend had a blood clot, and two participants said they had actually had blood clots. One stated, “When I experienced chest pain and did research online. It turned out that I had pulmonary embolisms (while on BCP- birth control pills).” Only 6 out of 311 women reported learning about the symptoms of blood clots from their doctor. Ironically, more women knew someone who had a clot.

At the end of the survey, the participants were invited to share anything further about their experience on the pill. Here are some of their answers:

My experience on birth control pills, the Nuvaring, or Depo-Provera all proved to be horrendous… I think birth control pills came straight from hell and I hate, hate, hate it. I would rather undergo Chinese water torture daily thank take birth control, and that is the God’s honest truth… My fertility has been affected forever by my under informed choice to go on birth control, and by the irresponsible doctors who encouraged me to switch methods rapidly “until I found what worked for me.”

I’ve had two different GYNs give me completely contradictory information about the side effects and dangers of BCPs… Overall, I’m surprised at how little doctors seem to know about female BCP- I haven’t experienced this amount of ambiguity with any other medical specialty or problem.

I was shocked- and grateful- when I finally found a doctor who discussed alternatives with me, suggested a wide variety of reading, and let me do my own research and make my own decision before wiring[sic] a prescription. After doing the reading, there is no way I will ever take another birth control pill in my life. Every other doctor I had acted like it was giving out Altoids…

I think they’re too often the first option doctors prescribe for reasons other than birth control. That’s frustrating. They’re not a magic pill and some doctors seem to think they are.

The bottom line is that most women do not fully understand the risks involved with taking birth control pills and they are not familiar with the symptoms of a blood clot.

At my thesis defense, when I mentioned that most women (over 60%) did not know the symptoms of a blood clot, my advisor asked, “Well, I don’t think that’s so unusual. Do you think most people know what the symptoms of a blood clot are?”

“No, but I think people who have been prescribed a medication that greatly increases their risk of blood clots should be informed of the symptoms,” I responded.

Who Is Responsible?

This is a simple question with a complicated answer. Who is responsible for making sure women who use hormonal contraceptives, especially women who are at a much higher risk for blood clots, understand the symptoms and when to get help? Is it the responsibility of the doctor who prescribed the medication? Or is it the responsibility of the pharmaceutical company to provide clearer information? Or is it the responsibility of the patient?

From my personal experience, I now know that I cannot trust my doctor to always make the right diagnosis and provide the right treatment. Most of their information comes from the pharmaceutical industry who have clearly demonstrated that they put profit first. And our research is showing that their information is not correct. Therefore, I cannot rely on the drug companies to make sure they provide me with accurate and straightforward information about their medications.

So that leaves me. And you. Until we demand a system that puts patients first, a system of health and transparency, we have to put ourselves firsts. How? We do that by listening to our bodies, doing the research, and learning to trust our intuition. That may mean we have to disagree with our doctors. That may mean we have to ask for a second opinion. That may mean we have to insist on being heard. We can’t be afraid of offending someone or “rocking the boat.” We can’t be afraid of being considered hysterical or melodramatic. We can no longer sit back and hope others are making the best decisions for us. We have to educate ourselves. We must be our own advocates. Our lives depend on it.

And we can start by learning the symptoms of a blood clot.

What Are the Symptoms of Blood Clots?

Blood clot in leg:

swelling
pain
tenderness
an unusually warm sensation in the affected area
an unusually cold sensation in the affected area (this is per our research, more details to follow)
pain in your calf when you stretch your toes upward
a pale or bluish discoloration

Blood clot in chest:

sudden shortness of breath that can’t be explained by exercise
chest pain, may feel like extreme heart burn
palpitations, or rapid heart rate
breathing problems
coughing up blood
dizziness (per our research)
uncharacteristic fatigue (per our research)

Blood clot in the brain:

severe headache
loss of speech
numbness or tingling of limbs
difficulty seeing or changes in vision
difficulty speaking or finding words

For more information about blood clots, especially in conjunction with hormonal contraceptive use, click here.

The Feminist, the Crusty Old Reporter, and the 102-Year Old Man: Antiheroes of the Pill

by Mike Gaskins

Published on August 18, 2016

4399 views

After a well-known physician unwittingly sparked my interest in birth control, I dived into the rabbit hole of hormonal contraceptive research. The number of diseases linked to The Pill shocked me. What’s more, some of these associations dated back over 50 years.

There’s a tendency to discount early research on The Pill because we’re told the first generation pills were completely different. They contained very high doses of estrogen, but today’s pills are safe because of the lower dosage. At least, that’s how the story goes. It’s a faulty premise I will discuss in future posts. Even if it were true and today’s pill was 100% safe, it would still be important to remember the pioneers who fought for a safer pill.

The Pill met virtually no resistance on its path to FDA approval thanks to impeccable timing. The sexual revolution had just crossed paths with fears of a looming population explosion. People across the political spectrum were excited about the promises of this little miracle pill. Consequently, all eyes focused on The Pill’s efficacy. Safety didn’t even register as an afterthought until three courageous people turned the spotlight on the growing chasm that separated The Pill’s promises from its reality.

The Antiheroes of Birth Control

Barbara Seaman was a feminist and a tenacious journalist whose groundbreaking book, A Doctor’s Case Against The Pill, inspired the Nelson Pill Hearings. These congressional hearings, called by Senator Gaylord Nelson, examined whether The Pill had been proven sufficiently safe before being released to the masses. Another author who covered The Pill extensively and was frequently cited at the hearings was Morton Mintz, medical reporter for the Washington Post.

Barbara Seaman: The Feminist

Barbara Seaman’s passionate investigation of synthetic estrogens began as a young woman after her Aunt Sally died of uterine cancer at the age of 49, presumably from taking Premarin. The doctor warned the women in her family that they should never take such drugs. The warning inspired her to build a career fighting synthetic hormones and the “Don’t worry your pretty little head” mentality that prevailed in the medical industry. She continued the mission until her death in 2008. Along the way, she learned that there were many prominent physicians who shared her concerns about The Pill.

As her classic book went to press in 1969, Ms. Seaman wrote a letter to Sen. Nelson. She suspected he would be interested because he was the chairman of a committee currently investigating the drug industry. Her letter can be seen in full at the Jewish Women’s Archive linked above, but here are some key excerpts:

“Never before in history have so many millions of people taken such a powerful and unnecessary drug.”
“You cannot long knock any natural system out of balance without doing some harm, – whether it shows up immediately or years later. Furthermore, many of these pill-caused metabolic disturbances are progressive. The longer a woman stays on the pill the more her laboratory tests are altered.”
“I believe that many of the women using the pill would switch to alternative methods if they knew the extent of the already-documented body pollution the pill is causing.”
Why has the suggestive evidence about the two most frightening possibilities – cancer and genetic damage, been generally withheld from the public, including physicians?

She bolstered her argument with quotes from revered physicians like Dr. Harry Rudel, one of the developers of The Pill, who admitted: “The pill is something we entered into with the best of faith, something we truly believed affected only ovulation and fertility. It was a relatively small dose of a drug, and it appeared that it was not affecting anything except fertility. Then as we began to look, we began to see that we are influencing many systems in the body.”

She carried things a step further with a quote from Dr. Philip Corfman of the National Institutes of Health, who said, “There is no organ or system of the body which, upon examination, has not been found to be affected by the pill.”

Morton Mintz: The Reporter

As medical reporter for the Washington Post, Morton Mintz won many prestigious awards for his 1962 reports on birth defects caused by Thalidomide. In 1965, he turned his attention to The Pill. Many of his stories were referenced and can be found in the appendixes of the Nelson Pill Hearings. His dispassionate, ‘Just the facts, ma’am’ approach provides the perfect counterbalance to Ms. Seaman’s style.

When I first contacted Mr. Mintz, he began the conversation with a caveat. “I’m 93 and have forgotten mountains of stuff.”

However, the mountains of stuff he did remember were fascinating. He said that, as a reporter, he had no opinion of whether The Pill was safe or unsafe. “What concerned me was the stunning inadequacy of the evidence of safety that the FDA had in hand when it approved the pill.”

In fact, he famously called it a “scientific scandal” in one of his Post columns. When he presented the facts of the approval to the new FDA Commissioner Robert Goddard on Face the Nation in 1967, the commissioner admitted that the evidence had been insufficient, and that he couldn’t say whether he would have made the same decision. This was a stunning admission that Mr. Mintz recalled fondly, “I was invited on such shows to challenge the likes of the Commissioner of the FDA and the chairman of Philip Morris with, I egoistically thought, wonderful results… Now all we get is Newt Gingrich and the like.”

Long after the television lights faded and the headlines about the Nelson Pill Hearings disappeared, Mr. Mintz was the only major press member to stay on the story. His pill coverage continued until 1977, when he was moved back to the Supreme Court. He learned later, from a friend at the New York Times, that he had been reassigned because a well-connected woman at the Post had gone to the editor and said she was “sick and tired” of his stories on The Pill, “…she and her friends used it and knew it was safe.” Her anecdotal ‘proof’ was enough to have the final committed journalist taken off the beat.

The authenticity of Mr. Mintz’s work resulted from a true desire to be able to say The Pill had been proven safe. In the introduction to his book, The Pill: An Alarming Report, Mr. Mintz explains that he and his wife are members of Planned Parenthood, and,

“Nothing could have pleased me more than to have found that The Pill was free of hazards. However, the answers made it overwhelmingly clear that safety had not been established.”

I’m grateful to Mr. Mintz, not only for his enduring work, but for putting me in touch with Ben Gordon. As he passed along the contact information, he told me that Mr. Gordon was the lead staffer for Senator Nelson, and had put together the pill hearings. He added, “Ben’s 102-years old, but still sharp as a tack.”

Ben Gordon: Lead Staffer for Senator Nelson

Senator Gaylord Nelson inherited Ben Gordon along with the Subcommittee on Monopoly from Senator Russell Long. Mr. Gordon had spent ten years on Capitol Hill prior to working with Senator Nelson, and the senator trusted him implicitly.

Mr. Gordon assembled the roster of doctors to testify at the hearings, wrote the opening statements, and generally did all the legwork behind the scenes. Throughout the proceedings, he sat at the table next to Chairman Nelson, and frequently chimed in with questions and comments. With Senator Nelson passing away in 2005, Mr. Gordon is one of the few living people who can give a first-person account of the inner workings of the hearings.

He told me about his first meeting with Ms. Seaman after they received her letter, and how he had thought he would call her to testify. Upon reading her book, he decided it would be better to go with the doctors whose studies she cited. He said he has always had a policy to avoid indirect testimony because it is too easily picked apart.

If you’ve followed Kerry Gretchen’s posts on the hearings, the excerpts read like a who’s who of Ms. Seaman’s favorite doctors. Even with ‘direct testimony,’ Senator Bob Dole eagerly tore into physicians who suggested The Pill had safety issues. According to Mr. Gordon,

“Dole was on our committee, and when he came, there was no question he was representing the industry.”

Taking Up the Torch

As a result of the hearings, The Pill became the first medication ever required to include an information booklet for patients. Unfortunately, the oft-ignored booklet also meets informed consent requirements, and may explain why so few doctors take the time to personally warn patients about side effects.

In the aftermath of the hearings, drug manufacturers also rolled out new, lower-dose versions of The Pill, and claimed they were safer. Again, these statements were made without adequate testing, but this time, the claims went unchecked.

As proud as he is of the hearings, Mr. Gordon admits he is surprised that no other politician has ‘taken up the torch.’ When I asked Mr. Mintz whether he thought today’s journalists shared his sense of duty to protect citizens, he replied,

“Have you ever seen an editorial condemning corporate misconduct other than financial shenanigans? I can’t recall any.”

Perhaps you’re thinking, “It’s been 50 years! Surely, today’s pill has been proven safe.”

That’s a reasonable assumption. However, it’s dead wrong. The maker of today’s most popular brand of birth control pill paid out $1.69 BILLION to settle over 8,000 lawsuits as of February 2014. You needn’t go any further than the personal stories shared on this site to know the number of injuries and deaths continues to grow.

The truth behind Dr. Corfman’s statement remains,

“There is no organ or system of the body which, upon examination, has not been found to be affected by the pill.”

Yet, our politicians and journalists are no longer interested in the conversation. Sadly, neither are the feminists or even the women who take The Pill. It seems as though we have forgotten that these are in fact very strong medications – synthetic chemicals with serious side effects.

We clearly can’t count on our ‘thought leaders’ to lead on this topic. The only way they will care again is if we, the people, reignite their interest. I’m just a single voice on a small stage (a man no less), but I’ve decided to do my part to take up the torch. And that begins with these posts on Hormones Matter.

Next, I will look at a forgotten history of synthetic estrogen that should have warned us The Pill is unsafe at any dose.

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Why Am I Here? Thoughts on Survivor’s Guilt

by Kerry Gretchen

Published on July 25, 2016

2230 views

“I’m so glad to see you. I didn’t think you were going to make it.”

If you’ve read my story, you may remember that is what the emergency room doctor said to me a few weeks after I had a stroke. I had only been out of the hospital for a week when I developed a rash from the seizure medication I was taking. Because it was a Friday night, my neurologist told me I needed to go to the emergency room. I cried as my in-laws drove into the parking lot of the little local hospital. It was the very same hospital that had sent me home twice before finally discovering, days later, that I had blood clots and was bleeding into my brain.

“You’re a miracle.”

One of the advantages of having a stroke at 28 is that when you return to the ER, they finally take you seriously. I was ushered into an examination room within 5 minutes of checking in. As I waited to be seen by the doctor, a nurse came in. She was very excited and a little emotional.

“Hi,” she said. “Don’t you remember me?” I did not. “I sat with you for hours when you were in here a few weeks ago.”

I immediately began to feel very guilty for not remembering this lovely woman who so obviously cared about me. She took my hand in hers. “You’re a miracle,” she said reverently.

Confused about what the appropriate response to that was, I smiled meekly and said, “Thank you?” When she left the room, I could hear her talking to people up and down the hall. “The miracle girl is here!” she said over and over.

Later, I would lay in bed, or sit on the couch, or ride in the car and wonder, “If I’m such a miracle, why am I here?” What was an enthusiastic and loving sentiment from that nurse turned into a real mindf*@k (pardon the language but there was really no phrase that worked as appropriately here) as my poor, broken brain puzzled over why I had survived.

What is Survivor’s Guilt?

Trying to understand your purpose in this world is a tough enough task. Nevermind trying do it while you’re struggling to just tie your shoes and feed yourself. I wanted to put it out of my mind and just take things one day at a time. But it was hard to do that. There is so much uncertainty during and after a health crisis like a stroke. What will my life look like now? Will it ever look like my life before? Do I want it to look like my old life? Of what kind of life am I even capable?

At the time, I wouldn’t have called it survivor’s guilt, but that may have been what I was dealing with. Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.

Though more common, or perhaps more noted, in survivors of combat and natural disasters, it can also occur in patients who have overcome a health crisis (cancer survivors, HIV/AIDs patients, etc.). It was originally identified in the 1960s in survivors of the Holocaust and since been re-categorized as a symptom of Posttraumatic Stress Disorder.

Treating the Whole Patient

Because we don’t usually think of health crises as causing PTSD, the guilt and other mental health conditions that accompany these situations are often left untreated. I was treated for my stroke physically, but not really mentally, except in the capacity that it affected my actual cognitive abilities. I was sent home from the hospital with prescriptions for blood thinners, seizure medication, and a whole host of other drugs to counteract the side effect of the other two (despite the fact that I had not exhibited any of those side effects). Yet no one asked how I was dealing with the emotional side of what happened to me.

And it’s not just stroke survivors that have trouble processing what happened to them.

“Depression is 3 times more common in patients after a heart attack than in the general population, with 15% to 20% of heart attack victims qualifying for a diagnosis of major depressive disorder, and a far greater proportion experiencing increased levels of depressive symptoms.”

According to the Lung Cancer Alliance, 63.9% of lung cancer survivors have experienced feelings of survivor guilt.

“While survivorship is often portrayed as an over-the-moon, happy feeling that all people battling cancer set as their goal, many lung cancer survivors feel burdened by it, experiencing emotions of guilt, anxiety and stress.”

Yet it seems that once the physical body is out of danger, many patients, myself included, are left on their own to unravel the emotional impact—to make sense of the new and unfamiliar life in which they find themselves. Often this process can take years.

For example, this project I’m working on is a staggering reminder that I have survived while so many haven’t. Though my stroke was 10 years ago, it is difficult to read the stories and interact with the families of the women who were killed by hormonal birth control. It brings me face to face with questions I thought I had long ago answered. Why me? Why did I live while so many others did not? And am I doing what I’m supposed to with this life?

“I really needed you.”

About a year after my stroke, I told my dear friend Jamie about what the nurse said. I told her how much it weighed on me, about the pressure I was putting on myself. Her response was beautiful and simple and a good reminder for us all. “What if you’re here because I really needed you not to die?” Mind blown. Maybe some survivors are supposed to achieve great things and change the world. Or just maybe our purpose is as subtle and as profound as being there for someone else.

That message was enough for me for a long time. But when I was contacted about working on this project, I knew there was a reason. This work is important. Women need to understand the side effects of hormonal birth control, the symptoms of a blood clot, and that their options are not just the pill or pregnancy. We need to start asking why life-threatening blood clots, emotional issues, loss of libido, weight gain, as well as many other side effects are considered “acceptable.” We need to hold the pharmaceutical companies to a higher standard. We need to value human life above corporate profit. We need to take women seriously when they discuss their medical concerns. We need to fully research women’s health issues. The entire paradigm of women’s health care and contraception needs to change. The conversation has been started. And I think I may be here to add another voice to it. The voice of a survivor.

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.

hormonal birth control - Page 3

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

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Blood clot in chest:

Blood clot in the brain:

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