birth control pill

Why I Made a Documentary About the Birth Control Pill

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I began using the birth control pill in my early 20’s. After 3 years of using the pill, I decided it was time to stop. I didn’t expect the process of coming off birth control to be so harsh. I was wrong. The withdrawal symptoms were unlike anything I had ever felt before. I developed extremely high blood pressure, had tingling and weakness throughout my body, brain fog, and a frightening sense of depersonalization. Not a single doctor could give me any information about what was causing these symptoms, when they would end, or even if they would end. In fact, most of the physicians I saw denied that pill withdrawal was a thing. They said that my symptoms were anxiety and suggested an antidepressant. I knew that couldn’t be the cause of these unique, first-time symptoms. I felt like there was no hope in sight. Through research, I found that I was not alone. There were many women who experienced similar symptoms while withdrawing from hormonal contraceptives, In fact there were thousands of women just like me.

I wrote an article about my full experience coming off the birth control pill and published it on this website, here. Since then, the article has received hundreds of comments from women who developed similar withdrawal symptoms. I decided to make a documentary about hormonal birth control in an effort to help spread awareness, and, to comfort other women who were struggling. Filming a documentary with no crew, no production money, and no experience, will fully test one’s sanity, but I was determined to uncover and document the health effects of hormonal contraceptives. After 4 years of work, I released the documentary entitled, “Hormoneously Alone,” on YouTube.  It can be found here.  I learned a lot from filming this documentary, and over the next few months, I will be writing a series of articles about the topics discussed in the film as well as other information that I was not able to include.

Ninety-eight percent of the female population will use a hormonal contraceptive in their lifetime. This is likely because it is 99% effective at preventing pregnancy when taken regularly. Using the pill alleviates worry and it is easy to use. In the US alone, this means that about 13 million women use hormonal birth control, with 6 million between the ages of 15-24 and 7 million between the ages of 25-34. I also learned that about 60% of women who have taken the pill have done so for other issues unrelated to pregnancy. Acne, bloating, and cramps are some of the main catalysts for using the pill.

What you may not know, and what I did not know before I began taking the pill, is up to 60% women who use hormonal contraceptives, whether for the prevention of pregnancy or for other reasons, stop taking the pill within 6 months because of side effects.  Unfortunately, there is little research on pill withdrawal and why it effects some women and not all. Through my own research, I’ve personally estimated that about 15% of women will experience withdrawal symptoms.  This is troubling because these withdrawal symptoms seem to only be recognized by the women who use these products. There are few experts in women’s health who understand pill withdrawal. Most doctors and gynecologists seem unaware of these effects. This leaves most of us struggling to recover on our own.

If a significant amount of women use hormonal contraception at some point in their lives, and the side effects both on and off the pill are not well studied, do we really know enough about the well-being of the girls and women who use them? With teenagers especially, are we doing more harm to the developing brain and body when we prescribe artificial hormones for things like acne and painful or irregular periods? Given the large number of girls and women who use the pill, do we as a society, not just as women, understand what we are committing to when we take the pill? From what I experienced and what I learned while producing the documentary, even though the pill has been on the market for over 60 years, we still do not fully understand the implications of using artificial hormones. Over the next few articles, I will be tackling some of these big issues that many women wonder about while on the pill, and off the pill. Hopefully, what I have learned will help others make more informed decisions and feel empowered to know what’s right for their body, and their body only.

Hormoneously Alone – A Birth Control Documentary

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The Spin Doctor’s Prescription for Birth Control

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The term ‘Spin Doctor’ wouldn’t be coined until much later, but it was already clear by the time of the Nelson Pill Hearings that some prominent physicians were willing to twist statistics, incorporate doublespeak, and create confusion in any way they could to defend hormonal birth control. They were Spin Doctors in the truest sense. Fortunately, within the context of Senate Hearings, their ‘spin’ was frequently challenged.

Let the Spin Begin

Dr. Robert Kistner from Harvard couldn’t find a bad thing to say about The Pill if his daughter’s life depended on it. However, simple challenges to his testimony made several of his statements seem comical. Consider this exchange with Ben Gordon from Senator Nelson’s staff, when Dr. Kistner compared pill deaths with those of cigarettes:

Dr. Kistner: For every pill-induced death in Britain there are at least 1,500 cigarette induced deaths; based on the total sales of the two products during 1967 one cigarette is three time as dangerous to life as one pill.

Mr. Gordon: Dr. Kistner, may I interrupt for just one moment? Since you compared the risks of smoking with that of the pill, do you know of any cases where smoking three packages of cigarettes has caused either serious illness or death? Three packages?

Dr. Kistner: Smoking three packages?

Mr. Gordon: Right.

Dr. Kistner: Obviously the answer to that question is no.

Mr. Gordon: I have here the proceedings of a conference held… at the headquarters of the American Medical Association… there are case reports, several reports where people have either died or have become seriously injured taking the pill for only 3 months, in other words, three packages of pills.

Dr. Kistner: Is there a cause and effect relationship demonstrated or proved?

Mr. Gordon: Well, it just says “Case reports: Thrombosis and embolism in patients taking the pill.”

Dr. Kistner: There is no cause and effect relationship so far as I can understand.

Mr. Gordon: They said the same thing about tobacco.

Then, there’s this exchange when Senator McIntyre tries to clear up which side effects Dr. Kistner thinks should be shared with women:

Sen. McIntyre: Well, Doctor, there is one thing that occurs to me, could you distinguish for me the difference between a side effect and a complication?

Dr. Kistner: Yes. A side effect of a drug is one that is generally accepted as occurring in some individuals as an undesirable effect other than that for which the drug is given. If one takes estrogen, one frequently becomes nauseated, estrogen “pulls in” sodium and some women don’t excrete the excess fluid and they become edematous and “blow up.” These are side effects: but if a woman takes estrogen and gets a blood clot and dies that is a complication.

Sen. McIntyre: That is more than a complication.

[Laughter]

Dr. Kistner: Well, that is the difference. I think if you asked me to explain the difference, I did.

Today, the spin is just as silly, but the humor is missing. No longer are the distortions challenged. What used to be a laughable punch line is now presented as a valid counterpoint.

Strokes Linked to Hormonal Birth Control

In 2012, the New England Journal of Medicine published the results of an extensive Danish study showing that women on birth control pills or other hormonal contraceptives are up to twice as likely to have a stroke or heart attack than non-users, but a funny thing happened to the story on its way to the press. Industry experts analyzed, mitigated, and diluted it beyond recognition.

ABC News offered the most balanced report. Their story begins with a young woman, a ‘former smoker and birth control pill user’ who suffered a stroke. However, after sharing some of the details of the study, they downplayed the results with the aid of a Spin Doctor, a gynecologist, to be exact, who said, “…pregnancy is far more likely to cause an MI or stroke than hormonal contraception.” Whenever someone dismisses a comprehensive 15-year, peer-reviewed study with a statement like this, they should be required to provide supporting evidence at least as comprehensive as the study itself. In this case, the doctor is repeating an old fallacy – a misinterpretation of statistics that has been around since the beginning of birth control.

Don’t Question Birth Control

One could argue that it is good journalism to seek out a dissenting voice – to effectively present both sides of the story. In this case, I disagree. It’s dangerous. And I have to admit, reading the responses from ‘expert’ physicians frequently brings out my snarky side. Consider the dissenting voices from these spin doctors in articles related to the same Danish study:

Huffington Post interviewed Dr. Diana Petitti, who told them:

“The amount of attention paid to these miniscule risks…detracts attention from more salient issues, like preventing unwanted pregnancy.”

Miniscule risks?! I’m not sure, but I think Dr. Petitti is saying she would rather double her daughter’s chance of having a stroke than risk her getting pregnant.

Later in the same article, Dr. Kathy Hoeger explained:

“The risk might be as much as two times greater, but when you know that the rates are 1 in 10,000, you’re just bringing it up to 2 to 4 in 10,000.”

Those numbers sound so cute, but when you think about an estimated 18 million women in the U.S. currently use hormonal birth control; we could be subjecting an additional 5,400 women per year to strokes and heart attacks.

My favorite may be Dr. Isaac Schiff, who told Boston.com:

“I would say in many ways, this is a good news story. This is a lengthy, large study that helps to confirm that the birth control pill is relatively safe, recognizing that no drug is 100 percent safe.”

He’s ecstatic that hormonal birth control only doubles the risk! He probably turned somersaults when he read that women on The Pill also have a 30% higher risk of developing Multiple Sclerosis, a 50% higher risk of developing Lupus, and could triple their chances of having Crohn’s Disease! (I will talk more about The Pill and the rise of Autoimmune Disease in future posts.)

Dissenting Voices

So, why is it dangerous to present these dissenting voices? Imagine you’re a young woman who’s just been diagnosed with a chronic disease. You begin puzzling the pieces together, and recall that your first symptoms appeared within weeks or months of starting The Pill. You take your suspicions to Google, and stumble upon an article that confirms your fears… or does it?

So, you click on another article. For example, this lupus article that tells you, “The risk was greatest during the first three months after starting “the Pill” — when there was a 2.5-fold increased risk.” You think you’re on to something, but then a prominent doctor from Johns Hopkins is quoted, “One shouldn’t oversell this. Women taking oral contraceptives need to weigh the risk/benefit of unexpected pregnancy versus a very small increase in lupus.” We can’t blame the reader for concluding her diagnosis probably didn’t have to do with The Pill after all.

The Risks versus The Optical Illusions

Optical Illusion - birth control spin

You probably saw this image floating around the internet not too long ago. It reveals a lot about how our brains process information. Our eyes take in all the curves, lighting, and shadows that define Blocks A and B, allowing our brains to analyze the difference in colors. However, when you cover the middle of the image, you discover the blocks are actually the exact same shade.

Only by covering the embellishment do you see the reality.

Media reports on epidemiological studies associated with The Pill often work like this illusion in reverse. They first give us the reality of the image – sharing some of the alarming facts or statistics from the new study. Just as the reader grows concerned that The Pill may be too dangerous, the author bevels the edges, moves the light source, and casts a different shadow.

As laypeople, we tend to assume they know more than us. They minimize the importance of the findings, and we — well, we start to look at it in an entirely different light. We walk away thinking it must not have been as bad as it originally sounded.

We can no longer afford to let reality be obscured by these tactics. Rather than having blind faith in a doctor quoted in some article, we need to consider that we could be dealing with a Spin Doctor. We’ve seen examples of some of these above, but here are five red flags that should make you think twice about the motivation of the speaker:

1) “Those Statistics Aren’t Really That Bad”

Pill proponents will attempt to re-frame numbers so that they seem insignificant. We saw a stereotypical example earlier in this article – “…you’re just bringing it up to 2 to 4 in 10,000.”

Another form of statistical acrobatics seen less frequently today is the attempt to convince us that nature is more dangerous than The Pill. You will recall the gynecologist mentioned early in this article: “…pregnancy is far more likely to cause an MI or stroke than hormonal contraception.”

I believe this method has lost some steam over the years because the mathematical contortions are so easily untangled. Consider this historical example: in his testimony at the Nelson Pill Hearings, Dr. Alan Guttmacher, President of Planned Parenthood/World Population, gave statistics suggesting pregnancy was more dangerous than The Pill (Competitive Problems in the Drug Industry, Ninety-First Congress, Second Session, Page 6565). This was a common argument at the time, but it was refuted beautifully by world-renowned neurologist, Dr. David Clark, speaking to the American Academy of Neurology,

The woman who takes oral contraceptives is, in effect, pregnant and delivering every month. In the normal course of her life, the average American woman has 3.6 pregnancies. She is fertile for approximately 30 years. If she takes oral contraceptives, she will be pregnant and delivering 360 times in that span of time. Expressed differently, she has 90 times more chance of showing the complications of pregnancy.” (Barbara Seaman, A Doctors’ Case Against the Pill, Page 26)

2) “Old Smokers Beware”

Media reports frequently stress that the risk is greatest for women who smoke or are over 35. This is a true statement, but the slight-of-hand comes in the implied message, ‘If you’re young and don’t smoke, you have nothing to worry about,’ which couldn’t be further from the truth.

Sure, they may try to convince you that you have better odds of winning the Publisher’s Clearinghouse than developing a deadly disease, but you don’t want to be on the backside of this one, saying, “That’s what I used to think.”

3) “There is No Proof of an Association”

The US tobacco industry played the ‘Proof versus Evidence’ game masterfully for decades. In 1954, they responded to early lung cancer studies by releasing the ‘Frank Statement to Cigarette Smokers.’ In part, it said:

Distinguished authorities point out…that there is no proof that cigarette smoking is one of the causes.”

As recently as 1998, John Carlisle of the Tobacco Manufacturers Association said:

“There is no such thing as conclusive evidence when you are talking about such a vast subject.”

The subsequent public release of internal communications from the tobacco industry revealed exactly what they knew, and how they strategized to maintain credibility while continuing to deny the overwhelming evidence. While we can’t assume Big Pharma has been consciously playing the same game, there are signs dating back to the early days of The Pill that eerily parallel the tobacco industry’s stance:

  • Complete denial of the association to cancer and strokes
  • Maintain credibility by admitting danger to a ‘small number’ of consumers
  • Agree to include a warning of the dangers with the product

By 1965, Morton Mintz, in the Columbia Journalism Review, expressed dismay at the ‘significant volume of reporting’ in medical journals that attempted to cast doubt on studies by using the argument that The Pill had not been proven unsafe. This was a 180-degree paradigm shift. The FDA had never been required to prove a drug unsafe. The onus was/is on the manufacturer to prove the drug safe. Clearly irritated by the ‘parroting’ in the press, Mintz wrote:

“…there was no acknowledgement that more was required – a disclosure as to specifically what weight of evidence of harm, in the eyes of the advocates, would add up to proof. Also missing was a recognition that for scientists there is no proof in the black-and-white sense, that all that can be had is evidence in one or another shade of gray.”

4) “It Could Have Been Something Else”

This is essentially a nebulous tangent of the ‘Proof vs. Evidence’ game. Despite the fact that criteria for publishing a study are extremely stringent, naysayers will attempt to cast doubt by questioning other variables that could have influenced the study. I recall one doctor actually asking, “How do we know it wasn’t the breakfast cereal the women had been eating that was causing these strokes?”

I suggest to you very few studies get published if they don’t eliminate Cocoa Puffs as a variable.

5) “The Benefits Still Outweigh the Risks”

Then there is the ubiquitous, “The benefits still outweigh the risks.” This phrase, more than any other, makes my head want to explode.

What kind of scale are they using to measure the benefits and risks? Are they looking at the isolated risk in a vacuum, and forgetting about all of the other associated risks? How do you compare a decreased chance of pregnancy with an increased risk of a deadly disease, regardless of percentages on either side, and determine that the benefits outweigh the risks?

Even if there were no other fertility control options available, I cannot grasp the idea of a healthcare professional saying, “Take this pill. It will greatly reduce the likelihood of you getting pregnant, but it doubles your risk of having a stroke…Did I mention that it will help clear your skin?”

Take Your Thumb Off the Scale

Clearly, when weighing the benefits to risks, someone has their thumb on the scale. The result is that there are many prominent physicians willing to perpetuate a pattern of denial and obfuscation anytime a new study is published. We have already seen how medical dogma can trump scientific evidence. So, whenever you read about a new study linking birth control to a deadly disease, remember that the media has run it through a decades-old filter of dogma and distortion. Isolate the Spin Doctor quotes, and take them with a grain of salt. Then, focus on the findings of the study itself. In other words, remove the embellishments and see the reality.

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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. 

This article was first published on September 13, 2016. 

Oral Contraceptives, Epigenetics, and Autism

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Oral Contraceptives and Autism

Over the last several months, I have published a series of articles exploring the potential connection between the use of oral contraceptives and the increased prevalence of Autism Spectrum Disorder (here, here, here, here, and here). It is my hypothesis that the synthetic hormones in oral contraceptives, which were created to imitate natural human hormones and disrupt endocrine function to prevent pregnancy, may be causing harmful neurodevelopmental effects in the offspring of women who use them [1].

The mechanisms by which oral contraceptives instigate neurodevelopmental changes is slowly emerging. It appears that in addition to preventing pregnancy, synthetic hormones like ethinylestradiol, used in most birth control formulations, initiate epigenetic alterations in the oocytes (eggs) causing persistent changes in expression of the estrogen receptor beta gene (ERβ). When those eggs become fertilized and conception ensues, the changes in the estrogen receptor gene impact the expression of autism and other neurodevelopmental disorders.

Ethinylestradiol is an Endocrine Disruptor

Here is how the ethinylestradiol used in oral contraceptives adversely modifies the condition of the oocyte. Bear with me, this is a bit complicated, but if you are woman who uses or is contemplating using oral contraceptives, this information is important to understand.

Ethinylestradiol is a known endocrine disruptor. Anything that disrupts endogenous hormones can be considered an endocrine disruptor. Evidence is emerging that ethinylestradiol may trigger what is called DNA methylation of the estrogen receptor gene. This then causes decreased messenger RNA resulting in impaired brain estrogen signaling in offspring [2]. Let’s think more deeply about this.

Methylation means that, by way of a chemical process, a gene is turned on (hypomethylation) or turned off (methylation) by an enzyme or protein. Researchers believe that methylation is one of a number of mechanisms by which environmental interactions influence genetic activity. In this case, ethinylestradiol silences or turns off some important processes that are associated with estrogen signaling, namely receptor activity.

Methylation and other epigenetic reactions influence health and disease processes across generations. This is called transgenerational transmission. So, I suspect that the deleterious effects of ethinylestradiol on the estrogen receptor gene are transgenerational. This is possible because the estrogen receptor gene may be an imprinted gene. Imprinting is a dynamic epigenetic phenomenon by which certain genes are expressed in a parent-of-origin manner. If the allele, an alternative form of the same gene, inherited from the father is imprinted, it is thereby silenced, and only the allele from the mother is expressed. If the allele from the mother is imprinted, then only the allele from the father is expressed.

If the estrogen receptor gene is an imprinted gene and silenced, then the oral contraceptive-induced methylation marks could be protected from global demethylation. Global demethylation is a protective process which is believed to occur throughout somatic cell differentiation and happen only twice during development, in primordial germ cells and in the pre-implantation embryo. If the methylation marks are protected from global demethylation, they will be preserved through fertilization and beyond to progeny generations.

To sum this up, durable changes to the function of the cells would be passed on by the aberrant methylation that piggybacks on the normal imprinting mechanism that protects epigenetic markings from reversal or demethylation. Ethinylestradiol, while successful at preventing pregnancy, may be damaging stored oocytes in such a manner that the offspring that emerge from those oocytes carry that same damage.

In addition, deleterious effects of exposure to oral contraception could perpetuate or even increase over generations as a result of both transgenerational transmission of the altered epigenetic programming and the continued exposure across generations. This has the potential to impart disease sensitivity at a later point in time [3,4,5]. While this concept, in the case of oral contraceptive use, is speculative, transgenerational imprinting was first studied in human beings in cases of nutritional factors [6,7,8]. In addition to nutritional factors, animal studies have shown that estrogens, androgens, progestagens, or similar receptor-level acting molecules, such as endocrine disruptors, can have harmful transgenerational effects [4,9,10].

How Impaired Estrogen Receptors and Estradiol Regulation Affects Brain Function

Estrogen receptors affect the regulation of endogenous estradiol concentrations. Estradiol is the primary estrogen our body synthesizes to regulate a variety of reproductive and non-reproductive functions. Estrogen receptors are located all over the body, in the heart, lungs, fat cells, and in the brain.

Maintaining appropriate estradiol concentrations in the brain is critical for mood, memory and a number of other cognitive functions. Estradiol is critically important because it directly influences brain function through the estrogen receptors located on neurons in many areas of the brain. Estradiol has direct protective effects on neurons and helps with the maintenance and survival of neurons. Endogenous estrogens, like estradiol, stimulate creation of nerve growth and viability, repair of impaired neurons, and influence dendritic branching. Estradiol also increases the concentration of neurotransmitters such as serotonin, dopamine, and norepinephrine and affects their release, reuptake, and enzymatic inactivation. In addition, estradiol increases the number of receptors for these neurotransmitters.

Synthetic estrogens, like ethinylestradiol used in many birth control formulations, may adversely affect the equilibrium of the endogenous estrogens like estradiol by disrupting sensitive hormonal pathways and impairing estrogen receptor expression. When the estrogen receptors become impaired, not only are hormone concentrations likely affected, but those functions that this hormone and receptor are responsible for regulating, are altered as well; functions like mood, memory and cognition.

Estrogen Receptors, Mood, and Cognition

Impaired estrogen receptor expression has been associated with altered emotional responses, depression, mood disorders, cognitive dysfunction, brain degeneration, and many other endocrine-related diseases [11-16]. In addition to confirmation that estrogen receptors are a factor in emotional responses [11], there is compelling evidence for estradiol’s involvement in the regulation of mood and cognitive functions [12,13,14]. Because the hippocampus, entorhinal cortex, and thalamus seem to be estrogen receptor beta (ERβ)-dominant areas, this suggests a function for ERβ in cognition, non-emotional memory, and motor functions [13,14]. Children with autism have notable difficulties in all of these areas.

Research also shows that estrogen is able to regulate the serotonin (5-HT) system, which has been associated with affective disorders [13,14]. Furthermore, recent studies using estrogen receptor knockout mice have assisted in defining the function of estrogen receptors in brain degeneration [15]. In vivo and in vitro studies also show that estrogen receptors are mechanistically involved in endocrine-related diseases [16]. Given that ERβ is the main estrogen receptor expressed in the cerebral cortex, hippocampus, and cerebellum [17], it is not difficult to imagine that epigenetic mechanisms cause persistent changes in gene expression of estrogen receptor beta (ERβ) that result in neurodevelopmental disorders like autism.

Interestingly, a recent study discovered a significant association of the lowered levels of the ERβ gene with scores on the Autism Spectrum Quotient and the Empathy Quotient in people with autism [18].

Evidence of Dysregulation of Estrogen Receptor Beta

Motivation for this epigenetic hypothesis comes from a recent study by Pillai et al., Dysregulation of Estrogen Receptor beta (ERbeta), Aromatase (CYP19A1) and ER Co-activators in the middle frontal gyrus of autism spectrum disorder subjects. This study examined the brain tissue of people that had ASD’s. The scientists found that the ASD brain tissue had far lower levels of a key estrogen receptor and other estrogen-related proteins [19]. The scientists measured the expression of proteins involved with estrogen signally pathways in brain tissue measuring levels of estrogen receptor beta and aromatase, an enzyme that changes testosterone to estradiol. Pillai et al. found 35 percent less ERβ. In addition, they discovered much less messenger RNA of estrogen co-regulators SRC1, CBP and P/CAF at 34 percent, 77 percent and 52 percent respectively [19]. Their results provide compelling evidence of the dysregulation of ERβ and co-regulators in the brain of subjects with ASD. Their data suggest that the synchronized regulation of ER signaling molecules has a significant function in ER signaling in the brain and that this coordinated network may be compromised in people with ASD.

Growing research supports the hypothesis that epigenetic mechanisms are causing persistent changes in gene expression of estrogen receptor beta that result in autism in offspring of mothers who use oral contraceptives. What is perhaps most troubling, is that it may be that the adverse effects of DNA methylation of the estrogen receptor gene are transgenerational.

Final Thoughts

We are just beginning to understand how endocrine disruptors can modify the development of specific tissues that lead to increased vulnerability to diseases and disorders. And, we are just beginning to appreciate the critical roles that hormones play in neurodevelopment, including neuroendocrine circuits that control physiology and sex-specific behavior that could result in behavioral and psychiatric conditions. As women, we have a crucial decision to make about which kind of birth control we use. Because there are inherent risks in all medications that we take, it is important that we fully understand all of the risks of the drugs we choose to use. Although this research is in its early stages, there is a growing body of evidence that ethinylestradiol initiates epigenetic mechanisms that cause persistent changes in gene expression of the estrogen receptors that contribute to the risk of autism in offspring.

References

  1. Strifert, K (2015) An epigenetic basis for autism spectrum disorder risk and oral contraceptive use. Med Hypotheses. 2015 Sep 6. pii: S0306-9877(15)00323-0. doi: 10.1016/j.mehy.2015.09.001
  2. Strifert, K (2014) The link between oral contraceptive use and prevalence in autism spectrum disorder. Medical Hypotheses December 2014 Volume 83, Issue 6, Pages 718–725
  3. Skinner M (2008) Epigenetic programming of the germ line: effects of endocrine disruptors on the development of transgenerational disease. Reproductive BioMedicine Online Vol 16 No 1. 23-25.
  4. Skinner M (2014) Endocrine disruptor induction of epigenetic transgenerational inheritance of disease. Molecular and Cellular Endocrinology Jul 31. pii: S0303-7207(14)00223-8. doi: 10.1016/j.mce.2014.07.019.
  5. Vaiserman A (2014) Early-life Exposure to Endocrine Disrupting Chemicals and Later-life Health Outcomes: An Epigenetic Bridge? Aging and Disease Jan 28;5(6):419-29. doi: 10.14336/AD.2014.0500419.
  6. Kaati G, Bygren LO, Edvinsson S (2002) Cardiovascular and diabetes mortality determined by nutrition during parents’ and grandparents’ slow growth period. Eur J Hum Genet. 2002 Nov;10(11):682-8.
  7. Pembrey ME (2002) Time to take epigenetic inheritance seriously. Eur J Hum Genet. 2002 Nov;10(11):669-71.
  8. Pembrey ME, Bygren LO, Kaati G, Edvinsson S, Northstone K, et.al (2006) Sex-specific, male-line transgenerational responses in humans. Eur J Hum Genet. 2006 Feb;14(2):159-66.
  9. Csoka, A B, Szyf, M (2009) Epigenetic side-effects of common pharmaceuticals: A potential new field in medicine and pharmacology (Article). Medical Hypotheses Vol. 73, Issue 5, 2009, 770-780.
  10. Csaba G (2011)The biological basis and clinical significance of hormonal imprinting, an epigenetic process. Clinical Epigenetics August 2011, Volume 2, Issue 2, pp 187-196.
  11. Amin Z, Canli T, Epperson CN (2005) Effect of estrogen–serotonin interactions on mood and cognition. Behav Cogn Neurosci Rev 2005, 4:43-58.
  12. Berman KF, Schmidt PJ, Rubinow DR, Danaceau MA, Van Horn JD, et. al (1997) Modulation of cognition-specific cortical activity by gonadal steroids: a positron-emission tomography study in women. Proc Natl Acad Sci USA 1997, 94:8836-8841.
  13. Ostlund H, Keller E, Hurd YL (2003) Estrogen receptor gene expression in relation to neuropsychiatric disorders. Ann NY Acad Sci 2003 Dec;1007:54-63.
  14. Osterlund MK, Hurd YL (2001) Estrogen receptors in the human forebrain and the relation to neuropsychiatric disorders. Prog Neurobiol 2001 Jun;64(3):251-67.
  15. Mueller SO, Korach KS (2001) Estrogen receptors and endocrine diseases: lessons from estrogen receptor knockout mice. Curr Opin Pharmacol 2001 Dec;1(6):613-9.
  16. Candelaria NR, Liu K, Lin CY. (2013) Estrogen receptor alpha: molecular mechanisms and emerging insights. J Cell Biochem. Oct;114(10):2203-8. doi: 10.1002/jcb.24584.
  17. Bodo C, Rissman EF (2006) New roles for estrogen receptor beta in behavior and neuroendocrinology. Front Neuroendocrinol 2006, 27(2):217-232.
  18. Chakrabarti B, Dudbridge F, Kent L, Wheelwright S, Hill-Cawthorne G, et.al (2009) Genes related to sex steroids, neural growth, and social-emotional behavior are associated with autistic traits, empathy, and Asperger syndrome. Autism
  19. Crider A, Thakkar R, Ahmed A, Pillai A (2014) Dysregulation of Estrogen Receptor beta (ERbeta), Aromatase (CYP19A1) and ER Co-activators in the middle frontal gyrus of autism spectrum disorder subjects. Molecular Autism 2014, 5: 46. DOI: 10.1186/2040-2392-5-46.

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.

This article was first published on October 15, 2015. 

Hormoneously Alone: Pill Withdrawal Syndrome from Hell

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It was two months since I had stopped taking The Pill.  Might I add, I hate how culturally grammatical we have to be when we write, “The Pill”.  THE Pill is how I read it. It’s 2019, and it all still seems so covertly retro. Anyway, it is hard to go back in time because the thoughts of what transpired the year I came off The Pill still overwhelm me. I had never really agreed with the notion of loading ourselves with synthetic hormone, and in fact, for 70% of my sexually active life, I used other very successful methods. Regardless, I was in my early 20’s, and like most, decided to hop on the Pill for a couple more years until I knew I had found the guy of my dreams. Well, the time came, I was in a great relationship, I felt safe and comfortable emotionally, as well as financially, and I made the choice to come off.  I popped the last little pink pill on January 19th, 2017. Fast forward to March 10th, 2017 and here is where it all started.

Peripheral Nerve Symptoms

I woke up with severe, I can’t stress the word “severe” enough, pins and needles in my hands and feet. That feeling you get when you lay too long on a limb, numb it out, and then feel the tingling- that feeling. So, I thought I had slept weird, and continued on with my day, but by night, the severity hadn’t changed. I woke up the next morning, still feeling this tingling but it was now accompanied by extreme feelings of weakness in my arms and legs. The strange part was that I wasn’t actually weak. I was able to lift heavy items like normal, it was just the feeling of weakness. Did I have a stroke? This is where the anxiety started to kick in. I have struggled with anxiety my whole life but over the next 3 months, I had never experienced such an extreme form of anxiety and depression like this. I was in the prime of my life, 25 years old, and I had never felt worse. I had this intense tingling in my hands and feet, weakness throughout my arms and legs, and an unremitting dismal and gloomy cloud following me. I started to research, and although mistakenly started to self-diagnose with brain tumors, Multiple Sclerosis, Lupus, Autoimmune, I ultimately thought I was deficient in electrolytes or vitamins, and bought a Gatorade. Well, that didn’t help either.

Brain Fog and Depersonalization

I decided to take a few days off from work, get a massage and do a few yoga classes. It was a week since these feelings started, and the brain fog was coming in strong. If anyone has ever had this brain fog symptom, I would almost say it’s more debilitating than depression itself.  The cloud of depression that hangs over your head is now in your head. Brain fog is like depersonalization, you’re really not sure if you’re even here on this earth, you feel so distant and detached from life, it’s scary. The massage helped me feel a bit better, not so tense, I was able to take a few deep breaths and have a few seconds of peace. When I went into the yoga classes, I would sit in the back. My goal was just to breathe and relax my body and my mind.  Well, the second the teacher started, I had waterfalls of tears flowing out of my eyes. Until this day, I couldn’t tell you why that was happening in each class but if that’s not a major sign of depression, I don’t know what is.

Buzzing Bees in My Spine and Brain

The tingling and weakness wasn’t going away. It was now the end of April and my period was two weeks late. I then started to wake up in the middle of the night with a feeling of buzzing bees up my spine and in my brain. The feeling was so off-putting and disturbing, I couldn’t fall back asleep. I would get hot flashes- peri-menopause? At 25? No way. My eyes would randomly hurt. My teeth would randomly hurt. I would have crazy sinus issues. There were times where I was so tired I would take the day off because I couldn’t move. I felt debilitated. I was not myself. I even thought about going on disability.

Could it be the Pill? Absolutely Not, Says Every Doctor.

All my life healthy, I was a kickboxing instructor, an everyday gym goer, something was just not right. It was time to go to the doctor. Getting an urgent appointment with the Gyno is nearly a battle in itself, especially when you call and say, “Something weird is going on in my body, I’m not sure what it is”.  Next appointment, 3 weeks away. So I went to the walk in clinic near my house, blood pressure: 150/110. I had never seen such high numbers. Diagnoses – anxiety, solution-anti depressants. No thank you. Something more was going on inside. I have been getting my period almost to the day since I was 12 years old, that’s 13 years of consistency. I’m not pregnant and 2 weeks late? No, something is wrong hormonally. I went to my primary care physician. They did blood work, checked me up and down – nothing. Again, my blood pressure read: 145/108, diagnoses-anxiety, solution-relax. I went to the Gyno, and was told “there’s no way these symptoms are from coming off The Pill.”  Shocked, I asked why it couldn’t be, she replied, “The Pill is something that needs to be taken every day because it gets metabolized within 24 hours, so if you haven’t taken a pill since January, it’s no longer in your system. You should get other testing done.”  I know that, I did that, but trying to convince someone with a much higher education in this field, an expert in fact, was going nowhere. I knew it was up to me to do my own research and trust what my body was telling me.

Women Know Better

I hopped back online and googled, “hormonal imbalance symptoms”, “after the pill reactions”, “what birth control really does to you”- the list goes on. It had been four months since these symptoms started. I finally came across an amazing blog post where there were 10 pages of women expressing the same symptoms as me after coming off the Pill. It was the most comforting moment of my life. I knew I wasn’t making these symptoms up. This wasn’t all anxiety. This was real; for me, for them, for everyone who had come off the Pill and felt a huge difference in their body. In my adult years, I shied away from publicly posting my feelings and connecting with people virtually, but, I felt like if I didn’t participate, if I didn’t help, that would just be immoral and unethical.

What was interesting to me was that we all initially thought MS or brain tumor. All of our symptoms happened about two months after we took the last pill and all of the symptoms lasted on average 8-9 months. Almost all of us had blood work, CT scans, MRI’s, and all of us came back negative on every test. We exchanged advice about best foods, herbs, and practices that were helping us, and consoled each other in this grueling sea of unknown. Every one of us were told that it wasn’t due to coming off The Pill, and every one of us didn’t believe it. It was from The Pill, it is from The Pill.

Ultimately, this takes time, a healthy lifestyle and patience. Some doctors will say, go back on the Pill to help it, but that seems counter-intuitive to me. When this reaction becomes so real and tormenting, the Pill is the most frightening thing and the furthest from the cure or the answer. I’ve researched endlessly for the past two years, and only recently see the term coined, “Post Birth Control Syndrome”.  It’s catchy, for sure, but the description isn’t quite as accurate.  There are weirder, stranger symptoms that happen than just the irregular periods, acne, and weight change; that to me seems like it skims the surface, that’s easy stuff comparably.

I’m happy to report that I feel back to normal, but this experience will never leave my mind. Through it all, I feel the injustices for women are brought about because of a terrible patient care system with limited time and awareness in an ever turning patient revolving door. I produced a documentary entitled, “Hormoneously Alone,” now out on YouTube, to shed light on these issues among others involving The Pill.

 

We’re all in this together, but with the lack of education, awareness and openness, we all may as well be alone.

If you or someone you know has had similar experiences coming off of the Pill, or if you would like to share your story, message me here, I would love to hear from you.

In Health,

Raquel Latona

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Diabetes: Another Problem with Hormonal Birth Control

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Diabetes is the 7th 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.

 

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.

Can a Man Weigh in on The Pill?

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After many months of intense research, I firmly believe the birth control pill stinks, but who am I to say? I’m not an M.D. or a PhD. Even worse, I’m not a woman.

At the risk of being counter-cultural, I’d like to be completely transparent. I’m a bald, middle-aged, Catholic, white man from Texas. Clearly, I’m not allowed to have an opinion on The Pill, but I do. And, I’m passionate about it!

Now that I’ve given you every label you could possibly need to dismiss what I’m about to share, I plead with you to hear me out. My passion for this subject is not driven by a moral or political agenda. I have no deep-seated desire to tell women what they should or shouldn’t do. In fact, I have only one agenda – to expose the very real dangers of hormonal contraceptives.

I’m telling you who I am up front because we live in a culture of extremes. We’ve lost the art of moderation. It seems we are all either Conservative or Liberal; Pro- or Anti-; Us or Them… Defined by extremes, there is no middle ground. Regardless of which side we’re on, when someone offers a different perspective, we assume they are ‘one of them.’

I never dreamed I would be a women’s health activist, but that’s what I’ve become. I’m not even sure that label can stick to me, but I’m eager to wear it, even if I have to clip it on with safety pins.

My Distaste for The Pill

My distaste for The Pill predated any religion or spirituality in my life. For that matter, it also predated being bald, middle-aged, and Texan.

My wife and I were young and deeply in love. Somehow, that fact came up in a discussion with her doctor. She had gone in with allergies, but came out with The Pill. That was fine by us. We hated condoms, and this sounded like the perfect solution. The doctor didn’t mention any side effects, and since it had been on the market for decades, she never thought to question its safety.

On about the fourth month, a little pamphlet fell out as she opened the package. I picked it up, and started reading. I was horrified. “Honey, did the doctor mention any of these side effects to you?”

“What side effects?”

We sifted through the complicated text, and discussed some of the warnings — breast and cervical cancer, strokes, and heart disease. They were especially disconcerting given her family history. She asked whether the doctor would have given it to her if he thought it was dangerous.

Ultimately, it was a long, thoughtful conversation that ended with me saying, “I can’t tell you what to do, but for me, if taking this pill means I get to spend even one less day with you at the end of our lives, it’s not worth it.”

It surprised me how much relief that statement brought her. The pills had apparently been making her feel crazy, and she decided to stop taking them immediately. Beyond my wife, my attitude about The Pill was indifferent. I never thought to ask my sisters if they had read the pamphlet, or if their doctors had warned them. It didn’t seem like my place.

Was it my place? Am I even allowed to talk about that with women beyond my wife? Where do my rights and responsibilities end?

Years passed. Then, a series of events brought me in contact with information that left me a little smarter than the average bear… at least where The Pill is concerned. When you’re privy to information that you know most women haven’t been told about The Pill, does your responsibility change? I think it does. I have sisters and nieces who suffered consequences because I didn’t discuss The Pill with them sooner. I believe anyone who learns the truth about The Pill should act on the urge to shout the news, and drown out the silence of the doctors.

My Focus on The Pill

As a writer and media producer, it was work that first inspired my pill quest. Writing requires a natural curiosity. Whether I’m developing a documentary or creating a marketing piece for a corporate client, I’m always looking for an interesting story.

A medical project early last year brought me in contact with one of the world’s leading authorities on a certain disease (I will be more specific about the disease in future posts). I sat in on a meeting as this revered doctor spoke to a group of young specialists about the basics of the disease.

He said, “We’ve known from the beginning that estrogen plays a key role… because 75- to 80-percent of diagnoses are women, and we know the role estrogen plays in a woman’s immune system.” He explained how environmental estrogens get into our system, and mimic natural estrogen.

My ‘interesting story’ radar went off even though it had nothing to do with the project at hand. I pulled out my phone. A quick Google search revealed that the incidence of this disease began climbing rapidly in the early 70’s.

I benefited from limited knowledge. All I knew of the disease was a time frame, and what triggered it – chemicals mimicking natural estrogen. The only example I could think of was birth control pills. Based on what the good doctor had said, I assumed the connection must be well known in the medical community, but was surprised I had never heard about it.

I struck up a conversation with him after the meeting, and asked exactly what role The Pill had played in all of this. He replied, “None at all.”

I was dumbfounded. “That seems impossible.” I wasn’t doubting him. In fact, I completely believed him, regardless how impossible it seemed. After all, he was the world-renowned authority.

He doubled down, “There hasn’t been any evidence linking The Pill to [the disease].”

The conversation continued for a while, but didn’t advance. It concluded with him saying, “Certainly, there are more questions than answers. And more research needs to be done.”

I walked away feeling confused – as if he had waved his hand and said, “These aren’t the droids you’re looking for.”

That Nagging Feeling

I was still thinking about the encounter when I got back to my hotel room that evening. I pulled out my computer and did a search for the disease, plus “oral contraceptives.” Among the top results was an article about a new study that found women who take The Pill are 50% more likely to have this disease than nonusers.

I wondered whether the doctor had been unaware of this study. The question didn’t linger long. He was quoted halfway through the article. In black-and-white, the world-renowned authority told women they shouldn’t stop taking The Pill because of this study, and that they needed to weigh the benefits against a very small increased risk of developing the disease.

Had he lied to me? At best, he had certainly obfuscated the facts. Maybe he just thought it would be too deep for a simpleton, and it was easier to say that no connection existed.

During the next few weeks, I continued my search, and found several studies over the past 50 years that had linked The Pill to this disease. And for each study, it seemed there were always leading authorities who were eager to say the benefits still outweighed the risks. This was a pattern I observed frequently as I broadened my search to include other ailments.

Questions About The Pill

Those early searches left me with two burning questions that drove me to dig deeper:

  • Are doctors being forthright with women about hormonal contraceptives so that they can make truly informed decisions?
  • Why is the medical community always eager to downplay studies that find risks associated with birth control pills?

Answers to the second question tend to dance around the political landscape. So, for the purposes of my posts on Hormones Matter, I will focus more on the answers to the first question. However, I do think it’s important to lay a little more foundation to explain how I formed my opinions.

In my next post, I will tell you how a feminist, a crusty old reporter, and a 102-year old man fueled my continued interest.

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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. 

Risk Communication and Hormonal Contraceptives

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When it comes to the dangers associated with hormonal contraceptives, how is risk communicated to women? Back in the 1960s when the pill first came out, only the doctors and pharmacists received the information pamphlet included with birth control pills. The burden was on them to decide what information to share with women and what information to omit. This was a central theme of the 1970 Nelson Pill Hearings. What are the risks of the birth control pill and how do we inform women of these risks? Here is testimony from several experts about the issue of informed consent.

Dr. Hugh Davis (page 5928): “In many clinics, the pill has been served up as if it were no more hazardous than chewing gum. The colorful brochures, movies, and pamphlets which are used to instruct women about the pill say next to nothing about possible serious complications. The same can be said for the veritable flood of articles in popular magazines and books which have convinced many women that there are few satisfactory alternatives to these steroids and that careful studies have proved there is little or no risk to life or health in the pill… It can be argued that the risk benefit ratio of the oral contraceptive justifies their use under certain circumstances, but it cannot be argued that such a powerful medication should be administered without the fully informed consent of each woman.”

Dr. Roy Hertz (page 6039): “My view would be that the application of these medications in their present state of knowledge constitutes a highly experimental undertaking. That the individual called upon to take these materials, particularly for prolonged period of time, should be regarded as, in effect, a volunteer for an experimental undertaking. I think she should be so informed.”

Dr. John Laragh (page 6167): “I think we have to do everything we can to simplify communication, to use education, to use techniques of repetition, to simplify the package insert. We can only go ahead in this area, and with many other powerful drugs… by full disclosure.”

With so many doctors insisting that women be informed of the risks of using hormonal birth control, we now have concise, unbiased, and easy-to-read risk information that comes with every package. Or do we?

Modern Risk Communication for Hormonal Birth Control

Because of my experience of having a stroke caused by hormonal birth control, I used my master’s thesis to investigate how drug manufacturers communicate the risks of taking birth control pills with respect to blood clots. Specifically, I was interested in determining whether the package inserts fully disclosed the risks for blood clots and whether/how women were informed of these risks by their physicians. The first part of my research assessed the risk communication, provided by the manufacturers, for three different types of hormonal birth control. This included reviewing the warning materials included with each packet of pills and determining whether the following information was included:

  • Did the information state that blood clots are a risk of taking this medication?
  • If so, did the information state that genetic disorders can increase the risk of blood clots?
  • Did the information list symptoms of a blood clot?
  • Did the information tell women with symptoms of a blood clot what to do in that situation (i.e. go to the emergency room, etc.)?

In addition to these questions, each insert was given a general overview of content, design, and language. Language and design play important roles in the understanding of risk and benefit. “Risk information typically is presented in often-ignored smaller print; as part of a large, undifferentiated block of text… or simply hidden in plain view… Even when found and read, risk information often is missing key pieces of information that consumers need to evaluate drug risks” (Davis). Unfortunately for women, this is the case with oral contraceptives.

How are Risks Communicated?

  • All of the inserts were text heavy, used extremely small font, and were designed in such a way that the paper would need to be rotated at least twice to access all of the information.
  • All three inserts had a larger portion and a smaller, perforated portion (presumably for a woman to tear off the larger section and keep the smaller) which means a woman would have to thoroughly read both sections of the inserts fully for all of the risk information (something that is unlikely due to the redundancy of much of the rest of the information).
  • Technically, each of the inserts lists all four points of information that were examined in this study, however, clotting disorders are only mentioned in the smaller sections, while symptoms of blood clots are only listed in the larger sections.
  • Each insert has statistical information about the risks involved with taking the medication but without the disclaimer that it is based on studies run by the very company who makes the medication. (Research has shown that studies funded by pharmaceutical companies that make oral contraceptives produced more favorable results than independent studies of the same medications.)

In general, the most highlighted information on any risk communication for birth control pills is a version of this:

Do not use [pill type] if you smoke and are over age 35. Smoking increases your risk of serious side effects from the Pill, which can be life-threatening, including blood clots, stroke or heart attack. This risk increases with age and number of cigarettes smoked.

I didn’t smoke and I was only 28 when I had my stroke from birth control pills. But the way this is worded leads women to believe that they are only at risk if over 35 and smoke. Which is patently false. All women who use hormonal contraception are at risk for blood clots. In fact, “the reality is that the estrogenic effects of combine hormonal contraceptives increase the risk of a potentially life threatening blood clot (venous thromboembolism or VTE) by between 400% – 700% for ALL women at any age including those that don’t smoke and those that do smoke. (Comparing Annual VTE Impact across 2nd-4th Generation CHC’s in the U.S. 2013).”

As Joe Malone points out in Five Half-truths of Hormonal Contraceptives, these types of warnings (being over 35 and a smoker) infer that if you are neither, hormonal contraceptives are perfectly safe for you. They are not. They weren’t safe for me and they weren’t safe for his daughter.

Another problem with these warnings is the conditional language stating that serious side effects “can be life-threatening.” A stroke, a heart attack, a blood clot—these things ARE life threatening. But as the research shows, conditional language like that helps give the patient confidence in the medication. After all, something like that can’t happen to me…

Would women feel as confident in their choice to use hormonal birth control if the warning accurately read: “This medication increases your risk of life-threatening blood clots by 400-700%”? Doubtful.

The Right To Know

Over 40 years ago, Dr. Edmond Kassouf testified at the Nelson Pill Hearings (pg 6121) about the information the drug companies were providing about birth control pills:

“Some of the pamphlets mislead and misinform, others are frankly dangerous, but all have one thing in common—they all seem to disparage the reader’s right to know.”

I wonder, how much has really changed?

By creating documents that are so text heavy, with dense language couched in conditional terms, in font barely large enough to read, pharmaceutical companies are clearly not designing for their audience, or any audience for that matter. But perhaps that is their intention.

 

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.

Pill Bleeds Are Not Periods

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The Pill is not just contraception anymore. It has become standard treatment for everything from acne to endometriosis to irregular periods. Yes, hormonal birth control can mask symptoms, but it cannot “regulate” hormones or periods in any meaningful way.

Hormonal birth control does not augment or regulate hormones. Instead, it suppresses ovarian function and shuts down hormones completely. It replaces endogenous hormones with synthetic steroids, and that’s not good enough for women’s health. Real hormones have many benefits for health that synthetic steroids simply cannot deliver.

Real Hormones versus Synthetic Hormones

Our real endogenous hormones are estradiol and progesterone. In contrast, synthetic steroids are ethinylestradiol, levonorgestrel, drospirenone, and many others. Real hormones and synthetic steroids are similar molecules, but they’re not identical and as a consequence, synthetic steroid have many different effects on the body, some of which we are only now beginning to understand.

For example, estradiol improves insulin sensitivity. Its synthetic counterpart ethinylestradiol impairs insulin sensitivity [1] (which is one of the ways the Pill causes weight gain). Progesterone is beneficial for hair, brain health, and bone density, but its synthetic analogues  levonorgestrel, drospirenone, and medroxyprogesterone have quite different effects. They cause hair loss, depression [2], and reduced bone density.  Moreover, the drospirenone progestin found in the Yaz, Yasmin and Ocella series of birth control pills, increases the risk of heart attack and stroke six fold. Its modified shape blocks what are called the mineralocorticoid receptors. These receptors are responsible for salt and water balance (think swelling) and blood pressure.

The only way that ethinylestradiol and progestins are similar to real hormones is that they induce a uterine bleed. They can even induce it monthly, but only if they’re dispensed that way.

Why Bleed?

Who really cares about a bleed for its own sake? If women can’t have real hormones, then why have a monthly bleed at all? It is merely to give the appearance of a period, and reassure women that they’ve had a period (when they haven’t). A bleed does prevent excess build-up of the uterine lining, but it does not have to be monthly. It can be quarterly or yearly or any time we withdraw from the synthetic steroids. Regardless of when we choose to bleed, the pill bleed is not the same as menstruation. Remember, the purpose of oral contraceptives is to block ovulation and prevent pregnancy. Without ovulation, our bodies do not produce endogenous hormones. Indeed, as any woman who has gone off of the pill after a long period of usage will tell you, it takes some time for ovulation and hormone production to begin again.

Normalizing our Periods: A Myth

Interestingly, the “regulation” of periods was the Pill’s earliest cover story. When the Pill was first developed, it could not be sold as contraception because contraception was not legal. Instead, the Pill was ostensibly prescribed to “normalize” periods. “Normalize” was a quaint euphemism which really just meant to be “not pregnant” (wink-wink).

Five decades later, and the Pill’s early cover story has now taken hold as a kind of weird counterfeit reality. Doctors readily prescribe oral contraceptives for all manner of female reproductive disorders, the most common of which is to ‘normalize’ the menstrual cycle. What they, and most women, fail to realize is that the monthly bleed precipitated by the withdrawal of synthetic steroids, is not a real period. It is simply a withdrawal bleed.

It’s time to end it. It’s time to bring back real periods.

There Is Another Way

As a naturopathic doctor working in women’s health for twenty years, I want my patients to have real periods. More precisely, I want them to have a follicular phase and make estradiol. I want them to ovulate, so they can then have a luteal phase and make progesterone. In short, I want my patients to make real hormones and to enjoy their many benefits.

There’s another reason I want my patients to have real periods. A healthy, regular period tells me that all is well with her underlying health. If a woman does not have healthy periods, then I keep working with her until she does. We use her period as a helpful, useful marker guiding her health decisions. We think of it as her monthly report card.

It’s not always easy to restore healthy periods, but it can be done. But with a little perseverance, natural treatments such as diet, supplement and herbs work well, and they give women what they deserve: A real period rather than a pharmaceutically induced bleed.

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.

References

  1. Kojima T et al. Insulin sensitivity is decreased in normal women by doses of ethinyl estradiol used in oral contraceptives. Am J Obstet Gynecol. 1993 Dec;169(6):1540-4. PMID: 8267059
  2. Kulkarni J et al. Depression associated with combined oral contraceptives–a pilot study. Aust Fam Physician. 2005 Nov;34(11):990. PMID: 16299641