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

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

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

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

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

A Massive Experiment

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

They Knew: Pill Induced Stroke

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

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

So seeing an increase in these should tell us something…

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

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

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

These symptoms are almost identical to mine.

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

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

Expletives and Indignation

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

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

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

 

Real Risk Study: Birth Control and Blood Clots

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

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17 Comments

  1. This is secind or third-hand information. Please direct me to the resources that support this conclusion (i.e. the actual scientific method journals of these experiments and findings).

    1. Hi Natalie, Thanks for your comment. These quotes from Dr. David B. Clark are directly from the Nelson Pill Hearings. His sworn testimony can be found on pages 6135-6156. The symptoms are also confirmed in a more recent article in Stroke, a journal from the American Heart Association and the American Stroke Association which you can find here. Let me know if you have any other questions!

  2. Kerry, I am sick reading this! My beautiful daughter is almost 22. She was diagnosed at age 15 with endometriosis and has been on the pill since then. She takes it without a break, because any bleeding intensifies her pain 10-fold. She is in constant pain due to the endo, and the pill is the only thing that prevents her from being in bed for several days a month. What else can we do?!

    Thank you for this article, and for your work.

    1. Hi Claire, I have endometriosis also. Many gynecologists don’t really know how to treat this condition effectively. Birth control pills may suppress symptoms but they don’t treat the underlying disease. The most effective long term relief is from excision surgery (not cauterization or ablation, the type of surgery most gynecologists do). Some women are able to be free of endo symptoms for many years or even permanently after excision surgery. There is a Facebook group called Nancy’s Nook that is a great resource for finding effective care for endo: https://www.facebook.com/groups/418136991574617/.

    2. Hi Claire, If my daughter or I had endometriosis there would only be one type of intervention I would trust: It is the surgical expertise of near contact laser surgery and suturing techniques that dramatically decrease the chance of adhesions (scarring) developed by Dr. Thomas Hilgers. If you google “surgical NaPro Technology” Natural Procreative Technology you will be able to track down a fellowship trained NaPro Technology surgeon, whose goal it will be to eradicate the disease from the patient (much like an oncologist would make sure that there is no cancer left in one of his or her patients). NaProTechonolgy is not about reducing the pain and make this awful disease manageable; it’s about curing it. In the last paper I read by Dr. Hilgers his technique has an only 6% recurrence rate in open surgery and a 20% recurrence rate when done laproscopically. That’s better than anyone. The good news it that your beautiful daughter does not HAVE to be on the pill and her endo CAN be cured. Best from Agnes

    3. Claire, thanks so much for your question. My friend and colleague, Philippa is really an expert in endometriosis so I definitely defer to her. There are many endometriosis stories and articles on this site, too. I’m so sorry your daughter is having to deal with this. I have endometriosis as well, but am so very lucky to have only mild symptoms (except the infertility). I wish you both the best!

  3. I always felt as if women were being used as guinea pigs for medical science with the birth control pill. I took it for a very short time in the early 1970’s and quit… My doctor did explain the higher risk of stroke and I didn’t think it was worth the risk; plus I had other complications.

    Thank you for your bravery and I’m so sorry this happened to you.

    1. Mary Anne, thanks so much for sharing. I wish my doctors had described the risks to me, especially that I could have a clotting disorder and not even know it! What was your experience when you took it in the 70s?

  4. I went to Planned Parenthood for the pill shortly before my wedding. I became pregnant on our honeymoon. After the birth of my daughter I went to my GP for another go at the Pill. (This was 30 years ago. He told me he would prescribe it if I wanted but here are the risks. He knew & he told me. I never touched it again!

    Over the past few years, as all the research has been more readily accessible, I’ve thanked God my doctor cared enough to research and tell hid patients the truth.

  5. I was also on Birth Control for years…starting as a teenager to regulate my period, later for BC purposes. From 18 until late 40’s?? So say, 30 years. I had a mild stroke in 2014 at the age of 60. It started with lightening bolt headaches that lasted 4 days. I kept popping Aleve. I woke up with numbness on my right side and was in denial. I was walking and talking, eventhough in the shower I couldn’t feel the water hitting my right side. When I told my sister what was happening on the phone, she freaked out. She said I was having a stroke and had to get to the hospital. I called my ex-husband and he immediately came and took me to the hospital. I was admitted for 2 days. I had CAT scan, MRI and Echo and it was discovered I had a mild blockage of the left cerebellum. I was lucky it was mild, but have residual effects and will never have 100%…I lost strength, depth perception in my right eye and when I get exhausted, I am symptomatic. I went back to work after 6 months of therapy; physical, occupational and speech. I work less and less. I get tired much more easily. I am often dizzy or “gimpy”. I was unable to read initially after the stroke and had NO reading comprehension. I was 2 points above dementia. After therapy, I tested out normal but went from pre school to high school in 5 months. I repeat myself and still do have memory issues. I am living a healthy lifestyle, clean diet and exercise and feel well. I have a really good neurologist but this subject…the pill…never came up. This makes a lot of sense.

    1. Terri, wow! I’m so sorry you had to go through that. Thank you for sharing. I found that I continued to recover for many years (even past the time the doctors said I would), so hang in there. How long were you on birth control pills?

  6. I’ve been thinking about this over the past few days, it’s still hard to understand why no one saw the warning signs in me or realized that I was experiencing were minor strokes.

    I was at the doctors constantly with daily headaches/migraines, as well as these ‘attacks’ (minor strokes) – I was a heavy smoker with a family history and showing warning signs, why didn’t it occur to my doctors that the pill was to blame or that these were strokes?

    At the time I remember rather than asking me about my symptoms each new doctor just looked at their computer and saw the doctor before them had prescribed X painkiller, if that hadn’t worked then in the flow chart in the doctors mind the next step would be to try another painkiller and not go over symptoms to figure out what it was I was actually experiencing.

    I was put on the pill for heavy flow, despite the fact it didn’t help this was coercive as I had no idea how the pill worked or the risks involved (if I’d been an adult that would’ve been my responsibility, but I was a child). Even when I started to question the pill I found doctors unwilling to discuss other treatment or birth control options, it took until I was in my twenties to realize I could take control of my health by coming off the pill myself.

    I put my health in my doctors hands, my doctors let me down and clearly I’m not the only one – it’s not just the pill but the culture of how the pill is used and our trust of doctors.

    1. Kay, it’s unfortunate that it seems to take a horrible event like this for us to learn to trust our bodies and question the doctors’ authority. When did you have your strokes? Were your symptoms similar to mine? I’m so sorry you had to go through this.

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