My headache started on a Saturday night in the middle of December. I wasn’t admitted to the hospital until a Monday morning in the middle of January. From the start of my headache until my diagnosis, I saw a chiropractor, an OB-Gyn, a doctor at the walk-in clinic, three emergency room doctors, and several emergency room nurses. I was mostly dismissed by all of them. Though I was presenting with symptoms of a blood clot in my leg as well as the headache, the OB-Gyn prescribed migraine medicine and told me I had a pulled muscle (despite the fact that I hadn’t been doing anything to warrant a pulled muscle in my thigh). Even the ambulance drivers were skeptical of my symptoms. It occurred to none of them that I might have a life-threatening blood clot. By the third time I went to the emergency room (the second time in an ambulance), I was having massive seizures and the doctor on call decided to investigate my condition further.
If you’ve read any of my other articles, you probably know by now that I had a stroke at 28 from a combination of birth control pills and a genetic clotting disorder that I didn’t know I had. You may also remember that I ended up researching clotting disorders, birth control pills, and risk communication for my thesis. To make a long story short, my thesis ended up in the hands of some wonderful people who have begun a grassroots campaign to help make women aware of the dangers of hormonal birth control. Their aim was not to take choice of birth control methods from women but simply to give them a complete picture of their personal risk so that they could make the most educated decision. They asked me to look into the Nelson Pill Hearings and find out what information about these medications has been buried for nearly 50 years. I was scared and excited and overwhelmed by the job, so I knew I had to do it.
It Wasn’t Just Me
The research I found for my thesis declared that most women who will suffer blood clots will do so within the first year of using hormonal contraception. I had been on the pill for 10 years. According to research from the first phase of our study, the women surveyed who had bloods clots while on hormonal contraceptives had been using these medications for longer than a year as well. In fact, 78 percent of the women developed blood clots AFTER the first year.
Another part of the first phase of this research project was to document the stories of these women because we believe case studies provide valuable clues about the development of blood clots that are often overlooked. What we found was that many of their stories sounded like mine:
- at best, women were misdiagnosed, sometimes several times, and sometimes fatally
- at worst, women were dismissed completely
A nurse gave me a very strong lecture about the “tension headache” I had and how I needed to learn to manage my stress. A doctor told another study participant that she should take an ibuprofen when she actually had pulmonary embolisms. She describes the conversation:
I explained that this was no normal pain; in fact, I had never felt anything like it. He acted very annoyed, sighed, looked off to the side, and said ‘Do you have Advil at home?’ I said that I was already taking three ibuprofen at a time, and that it didn’t really do anything for the pain. He said, ‘Just go ahead and take four and that should work.’ And then he walked away.
For Julia West Ross the misdiagnosis of sepsis was fatal. She was actually experiencing cascades of blood clots caused by the Nuvaring, but the doctors didn’t even know to look for that. Misdiagnosis proved fatal for Annie Ammons as well. Sadly, when she complained to her doctors about the side effects she was experiencing from Yaz (a more dangerous 4th generation birth control pill), they simply put her on even more medications until she had a heart attack.
Leslie was told by a nurse practitioner that the blood she was coughing up was due to post-nasal drip. “Well, they didn’t find anything wrong with you on Friday, and I’m not going to find anything today,” the nurse told her. “But I’ll examine you anyway.” In her own words, Leslie explains:
With an attitude like that, is it any wonder she completely misdiagnosed me? I was in tears from the pain when she asked me to take deep breaths while she listened to my chest. I was freezing cold under the a/c vent in the flimsy hospital gown they gave me. Yet, she lectured me on my huddled posture, told me my exercise regimen was inadequate, and said I had strained a muscle reaching for the telephone at work—that’s how she explained the chest pain; they were merely weakened muscles strained by reaching for the phone. The bloody cough? She couldn’t see a laceration in my throat, so it must be postnasal drip. Her strict instructions were to go home, apply moist heat, take over-the-counter pain killers, and not to return to the doctor for two weeks.
Leslie was actually experiencing bilateral pulmonary emboli that would have killed her if she hadn’t continued to seek medical treatment.
Gaslighting
I could go on and on and on with examples of women who were dismissed, ridiculed, and continually misdiagnosed. These stories are both heartbreaking and infuriating. It has become clear to me that women are being gaslighted by the medical profession.
Gaslighting is a term used to describe manipulating someone by psychological means into questioning their own sanity. I can tell you from experience, when you are in tremendous pain and a medical professional suggests that it may be in your head, you seriously begin to question yourself. You become confused, lose faith in your own body, and stop trusting your judgment. These effects are damaging and often deadly.
Why doesn’t the medical community take women more seriously? The problem has many facets that Dr. Chandler Marrs talks about more extensively in this article. As for doctors and nurses, I don’t think they are dismissing women because they don’t care. They truly believe hormonal contraceptives are perfectly safe, that blood clots are extremely rare, and only happen to overweight smokers, not to young healthy women. Our research shows otherwise.
My work on the Nelson Pill Hearings has proven that convincing doctors that these drugs are safe has been an ongoing and completely intentional manipulation by the pharmaceutical industry. Every witness that testified on behalf on the pill had financial ties to drug companies. Those that did not profit from drug companies, like Dr. Williams, warned us of these dangers (NPH, page 6277):
Prominent physicians long identified with pill promotion have actively advanced the cause, often with dogmatic denials of the pill’s dangers, often with exaggerated rebuttals of the danger alarms—for example, the pill is safer than pregnancy—and often with irrelevant analogies and misstatements of facts, calculated to obfuscate the issues.
He also warned us of the reach of the pharmaceutical industry in educating our physicians (NPH, page 6220):
the average practicing physician relies upon the drug companies for much, if not all of his information about drugs… the Physician’s Desk Reference is no more than a compendium of drug company advertising.
Dr. Williams was not the only one concerned. Dr. Spellacy testified that (NPH, page 6437):
One of the problems is keeping physicians informed of the tremendous expanding literature on this particular subject… I believe that relying solely on the pharmaceutical industry to inform the physicians of these things is shedding our responsibility as a medical group to keep ourselves informed.
Among the non-pharmaceutically funded experts to testify was Dr. Victor Wynn who pointed out in his testimony (NPH, page 6302) that “it is the greatest medical dilemma that confronts us at this moment… the deep division between doctors about the safety and the advisability of the use of oral contraceptives.”
What Now?
That was in 1970. I would say that while this is still a grave medical dilemma, the division is no longer deep. Pharmaceutical company rhetoric has effectively permeated the medical profession and most doctors believe that these medications are totally safe. They are not. Yet for the drug industry, there is no benefit to explore this issue further.
That is why we have been doing it ourselves. Until now, I think we have been making slow but steady progress. This project was planned out in several phases that were to take place over the course of 2-3 years. Unfortunately, our funding was cut two weeks ago. We still have so much yet to explore, including data from the hundreds of women who have taken our Phase 2 survey. So, I leave you with this final article and the old chestnut: “Fool me once, shame on you. Fool me twice, shame on me.”
We know that gaslighting is happening to women, especially women suffering blood clots from hormonal contraceptives. We have documented it. We know that the pharmaceutical industry is corrupt and places profit over human life. We also know that no one is coming to save us. We have to fight this battle ourselves—or shame on us.
We need your help. If you can help, please contribute. If you know of funding available for a project like this, please contact us. We want to keep fighting. For you. For me. For all women.
Crowdfund Hormones Matter: Contribute Today!
Photo by Nicole Mason/Unsplash.
A similar situation occurs when you are medically knowledgable about your own condition and history. I had a doctor be unbelieving and dismissive of me even though I had a history of deep vein thrombosis myself and a family history of death from clotting disorders. She said I did not need any sort of blood thinner therapy. About a year later I lost my first child due to a clotted placenta, and at age 45 suffer a massive stroke.
Beware using correct medical terminology. You will be secretly labeled an attention seeker, or a Munchausen patient.
Ramona, that’s a great point. I didn’t even think about that! We’re damned if we are educated and damned if we’re not.
Kerry, gaslighting is intended. You don’t need to be “kind” to an unprofessional, abusive hired hand. I went to a physician for a painful side effect from a drug. He asked if I felt like I was in a deep, dark pit with no way out. Then he prescribed a steroid which further complicates these side effects.If we are blind it’s because we have been lied to. information is withheld, or we are given misinformation.
My daughter had similar treatment from physicians, specialists, ER doctors, her psychiatrist, etc. when she had excruciating abdominal pain, hives, tachycardia, loss of bladder and bowel control, etc. etc. After two colonoscopies, an endoscopy, 5 or 6 CT scans, ultrasounds, oodles of blood tests that found nothing, and even on the sly drug testing at an ER, which amounted to a ton of medical bills, she was misdiagnosed with IBD, Gastritis, Polycystic Ovary Disease . . . Turns out when she went off her Abilify, (her own decision, rather than continue being a guinea pig) that she had been on for 5 years, she got well! Not one of those doctors had bothered to question the meds she was on. They would’ve just let her die. What can we do about this?? Doctors and drug companies are killing people!
Sally, I’m so sorry about your daughter. That is terrifying! I think we have to keep sharing our stories and doing our own research and supporting unbiased sources of information like Hormones Matter.
Been there, so true!