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A Joint Problem: Rheumatoid Arthritis and Hormonal Birth Control

Published on November 17, 2016

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Rheumatoid arthritis is an autoimmune disorder which causes the body’s immune system to attack the joints, resulting in pain and swelling. About 1.3 million people in the United States have rheumatoid arthritis, and of these, nearly 75 percent are women. “In fact, 1–3 percent of women may get rheumatoid arthritis in their lifetime. The disease most often begins between the fourth and sixth decades of life, however, RA can start at any age.”

At this point in my research into hormonal contraceptives, any disease that affects women so much more drastically than men I find suspicious. While reading the Nelson Pill Hearings (NPH), the testimony of Dr. Giles Boles, a professor of internal medicine, caught my attention. He was discussing oral contraceptives and rheumatoid arthritis. Like diabetes, this is another connection I had never heard about before.

At the hearings, Boles describes a 24-year-old woman who was experiencing mild rheumatic symptoms. After running some tests, she showed three abnormalities commonly associated with lupus. She had been taking oral contraceptives for 8 months and was on no other medication. “She was advised to discontinue her oral contraceptive therapy and within 6 weeks all of her laboratory abnormalities had disappeared.” Doctors continued to monitor her for over 2 years and she remained disease-free.

He also spoke about a two-year study published in 1969 that showed rheumatoid arthritis in women taking oral contraceptives increased more than 50 percent. Another study from the same year reported that 22 women with rheumatic symptoms had their symptoms diminish or disappear after discontinuing the pill (NPH page 6089).

That study, which was originally published in the British medical journal Lancet, was also discussed in Barbara Seaman’s book The Doctors’ Case Against the Pill (page 122):

“Over the past three years we have seen 22 young women who… after beginning oral contraceptives developed [arthritic symptoms]. The joint swelling was usually limited to the hands. On cessation of the oral contraceptive, the symptoms disappeared… We specifically inquire as to the use of oral contraceptives in all young women we see with rheumatic complaints…”

In researching the connection further, my first stop was the Centers for Disease Control. On their page for rheumatoid arthritis under “Risk Factors” is the following:

Oral Contraceptives (OC): Early studies found that women who had taken OCs had a modest to moderate decrease in risk of RA. However, most recent studies have not found a decreased risk. The estrogen concentration of contemporary OCs is typically 80%-90% lower than the first OCs introduced in the 1960s. This may account for the lack of associations in recent studies.

This seems very odd to me for a few reasons. First of all, if oral contraceptives decrease the risk of rheumatoid arthritis, why put it under “Risk Factors?” Secondly, though the “early studies” being cited are from 1993 and 1989, they point to the higher concentration of estrogen from pills in the 1960s as a reason for the conflicting information. Yet in 1970, Dr. Boles testifies about a very real connection between rheumatoid arthritis and the use of oral contraceptives.

Rheumatoid Arthritis on the Rise

A 2010 study from researchers at the Mayo Clinic showed that after four decades of decline, rheumatoid arthritis was on the rise among women. They cited oral contraceptives as one of the culprits:

“The incidence of rheumatoid arthritis (RA) in women has risen during the period of 1995 to 2007, according to a newly published study by researchers from the Mayo Clinic. This rise in RA follows a 4-decade period of decline and study authors speculate environmental factors such as cigarette smoking, vitamin D deficiency, and lower dose synthetic estrogens in oral contraceptives may be the source of the increase.”

Yet this WebMD article discusses a small German study that showed that oral contraceptive use could ease some symptoms of RA. Incidentally, the article also points out, “certain patients with inflammatory arthritis may increase their risk of blood clots by going on oral contraceptives.” This statement makes it seem that only some women are at an increased risk for blood clots when using oral contraceptives. That’s untrue. ALL women who use hormonal contraceptives are at an increased risk for blood clots.

While the German study was small and focused on symptoms, a meta-analysis of 17 studies showed no “protective effect of oral contraceptives on the risk for RA in women.”

Perhaps even more strange are the findings presented at the American College of Rheumatology Annual Meeting in Boston in 2014. The study presented there showed that choice of contraception may influence rheumatoid arthritis autoimmunity risk, with the biggest risk coming from IUDs (intrauterine device), though the research findings don’t specify whether patients used a copper IUD or a hormonal IUD.

According a meta-analysis by Hazes and van Zeben the overall unsatisfactory state of studies relating RA to the contraceptive pill suggest

“that oral contraceptive use may in fact be a marker for some other causal factor.”

Another article by William H. James from the Annals of Rheumatic Disease describes the problem with determining the connection between oral contraceptive use and rheumatoid arthritis:

“Over the last decade a dozen large scale studies have offered strikingly dissimilar conclusions on this possibility. An international workshop was held in Leiden in 1989 in an attempt to reach a consensus. It is not unfair to comment that consensus proved evasive.”

Is Rheumatoid Arthritis Connected to Hormonal Contraceptives or Not?

In 1970, the research clearly showed a connection between rheumatoid arthritis and hormonal contraceptives. Further research confirmed that. Then other studies attempted to demonstrate that the pill mitigated symptoms, while a meta-analysis showed no protective effect. Yet recent findings show an increased risk for women who use IUDs. In all of the recent research, the only consensus seems to be that there is no consensus.

The bottom line is that evidence about the connection between rheumatoid arthritis and hormonal birth control is inconclusive at best, incoherent at worst, and sometimes downright contradictory. Once again, I have to ask why. Why were there not conclusive studies conducted immediately after the 1970 Congressional hearings? Who gains by there still being confusion about this issue? Who loses? That one I can answer; women lose.

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Blinded By Side Effects: Vision and Hormonal Birth Control

by Kerry Gretchen

Published on November 1, 2016

14512 views

I don’t know about you but my vision is pretty important to me. I’m using it right now to type this article. I use it all the time, every waking hour of the day (except maybe when I’m meditating). So when I read the Nelson Pill Hearings and I came across the testimony of Dr. Guttmacher, I was shocked.

“Now, in addition to the danger from thromboembolism which has been described to this committee on several occasions by several witnesses, I think that there are other dangers for the pill… such as high blood pressure, headache, depression, interference with vision, and so on.” (page 6566)

Wait… the birth control pill affects your vision??? How can that be? And how could he just say that in passing? Why did no one on the Senate committee stop him and make him explain that that statement? It turns out, just like diabetes, yeast infections and UTIs, depression, weight gain, and so many other side effects, no one had told me that my vision could be affected by using hormonal birth control.

How Hormonal Birth Control Affects Vision

Hormones affect every system of the body so perhaps it should come as no surprise that they can greatly impact your vision. In fact, it is the fluctuation in hormones that is the primary reason for worsening eyesight with age. So of course, manipulating the body’s natural chemistry by using hormonal birth control can cause a variety of vision problems.

Dry Eye

According to the National Eye Institute (NEI), “Dry eye occurs when the eye does not produce tears properly, or when the tears are not of the correct consistency and evaporate too quickly.” While usually more uncomfortable than dangerous, if dry eye is left untreated it can cause pain, ulcers, scars on the cornea, and in rare cases, some loss of vision.

The NEI also states that it can be temporary or chronic and that one of the causes of dry eye is medications such as birth control. Unfortunately, that means dry eye is often overlooked in young women and teen girls using the pill. As Dr. Reiser of the Cornea Institute at the Children’s Hospital of Los Angeles points out, doctors “may not even think of it, but these drugs are frequently prescribed to treat skin problems and dysmenorrhea. Some [ocular] symptoms can mimic what you see in menopausal women.”

We also see dry eyes as a side effect of women who’ve had hysterectomies. Robin Karr details her experience with it here. It’s obvious that eye health is linked to hormones but the vision problems associated with hormonal birth control don’t stop there. Dry eyes may be the least of our worries.

Glaucoma

Dry eye may be uncomfortable and inconvenient but glaucoma, another eye condition linked to hormonal birth control, can be much more dangerous. Glaucoma causes damage to the optic nerve and can lead to permanent loss of vision. Perhaps the scariest thing about glaucoma is that most patients have no symptoms and are only diagnosed when having an eye exam. A researcher and ophthalmologist from the University of San Francisco found that use of birth control pills for three years or longer doubles the risk of glaucoma.

The fact that glaucoma is the second leading cause of blindness and that there is no cure is very disturbing. The American Optometric Association downplays the findings of this study and calls for more research. Yet, that seems to be the response to all of the research about the dangerous side effects of hormonal contraception. How much more research do we need to show that these medications are dangerous and dangerously over-prescribed? A woman could literally go blind from a medication she’s been prescribed to treat acne.

Retinal Occlusion

As someone who had a stroke while using hormonal birth control, this risk probably shouldn’t have come as a surprise to me. Retinal occlusion is a stroke of the eye caused by a blockage in the blood vessels of your retina. These blockages can be caused by blood clots, a well-researched and documented side effect of hormonal contraception. Like with a stroke of the brain, recovery isn’t guaranteed. Some people who suffer these retinal occlusions will never see again.

In fact, the risk with oral contraceptive use is so substantiated that you can find it in the “Practicing Ophthalmologists Curriculum Core Ophthalmic Knowledge” on the American Academy of Ophthalmologists website.

It should also be said that many of our Real Risk: Birth Control and Blood Clots study participants experienced vision changes before and during their blood clots. This was the case not just in the women who had had strokes but surprisingly also in the women who suffered pulmonary embolisms.

Seeing Clearly

I used birth control pills for 10 years and I never once had a healthcare professional- not my gynecologist, not my general practitioner, not my ophthalmologist- tell me that vision problems were a side effect. That Dr. Guttmacher mentioned it in passing at Nelson Pill Hearings seemed to indicate that the risk was well-known, even back in 1970. Current research supports that hormonal contraceptives adversely affect vision. Where does that leave us? What would you be willing to give up for a medication? Your physical health? Your mental health? Your libido? Your vision? Your life?

What else do we need in order to see that hormonal contraception is not worth it?

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.

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

by Kerry Gretchen

Published on October 18, 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Endometrial Ablation – Hysterectomy Alternative or Trap?

by WS

Published on June 16, 2016

73313 views

Endometrial ablation seems to be the latest “bag of tricks” in the treatment of women’s gynecological problems. It is an increasingly common procedure used to treat heavy menstrual bleeding. The procedure is premised on the notion that if the endometrial lining is destroyed – ablated – bleeding can no longer occur. Problem solved. But is it? Does endometrial ablation work? Does it resolve the heavy menstrual bleeding and prevent the “need” for a hysterectomy as it is marketed, or does endometrial ablation cause more problems than it solves? The research is sketchy, but here is what I found.

Short-term Complications Associated with Endometrial Ablation

For any surgical procedure there are risks associated with the procedure itself. Here are the short-term complications for endometrial ablation reported in PubMed: pelvic inflammatory disease, endometritis, first-degree skin burns, hematometra, vaginitis and/or cystitis. A search of the FDA MAUDE database included complications of thermal bowel injury (one resulting in death), uterine perforation, emergent laparotomy, intensive care unit admissions, necrotizing fasciitis that resulted in vulvectomy, ureterocutaneous ostomy, and bilateral below-the-knee amputations. Additional postoperative complications include:

Pregnancy after endometrial ablation
Pain-related obstructed menses (hematometra, postablation tubal sterilization syndrome)
Failure to control menses (repeat ablation, hysterectomy)
Risk from preexisting conditions (endometrial neoplasia, cesarean section)
Infection

Long Term Complications of Endometrial Ablation

Endometrial ablation to block menstruation. In order to understand the long-term risks of endometrial ablation, one must understand the hormonal interaction between the uterus and ovaries. The endometrial (uterine) lining builds and sheds in response to the hormonal actions of the ovaries. Ablation scars the lining impeding its ability to shed. But ovaries continue to send the hormonal signals necessary for menstruation and the uterus attempts to function normally by becoming engorged with blood. The problem is, the blood has nowhere to go. It is trapped behind the scar tissue caused by the ablation. This causes all sorts of problems.

Retention of blood in the uterine cavity is called hematometra. If the blood backs up into the fallopian tubes it’s called hematosalpinx. Hematometra and hematosalpinx can cause acute and chronic pelvic pain. Some data suggest that about 10% of the women who have had endometrial ablation suffer from hematometra. The pelvic pain in women who’ve undergone both tubal sterilization and ablation has been coined postablation-tubal sterilization syndrome.

“Any bleeding from persistent or regenerating endometrium behind the scar may be obstructed and cause problems such as central hematometra, cornual hematometra, postablation tubal sterilization syndrome, retrograde menstruation, and potential delay in the diagnosis of endometrial cancer. The incidence of these complications is probably understated because most radiologists and pathologists have not been educated about the findings to make the appropriate diagnosis of cornual hematometra and postablation tubal sterilization syndrome.” Long term complications of endometrial ablation.

So although ablation can have the desired effect of reduced or even absent bleeding, it can be a double-edged sword. This relief from heavy bleeding may, in the long-term, be overshadowed by chronic, debilitating pain caused by the ongoing, monthly attempts by the uterus to build and shed the lining.

Ablation leads to hysterectomy in younger women. The younger a woman is at the time of ablation, the greater the risk of long-term problems that can then lead to hysterectomy. A 2008 study in Obstetrics & Gynecology found that 40% of women who underwent endometrial ablation before the age of 40 years, required a hysterectomy within 8 years. Similarly, 31% of ablations resulted in hysterectomy for 40-44.9 year old women, ~20% for 45-49.9 year old women and 12% of women over the age of 50 years required a hysterectomy after the endometrial ablation procedure.

Another study, reported a similar link between endometrial ablation and hystectomy. “On the basis of our findings one third of women undergoing rollerball endometrial ablation for menorrhagia (heavy menstrual bleeding) can expect to have a hysterectomy within 5 years. If the linear relationship noted during the first 5 years is extrapolated, theoretically, all women may need hysterectomy by 13 years.”

Post ablation tubal sterilization syndrome. A 1996 study of 300 women who underwent ablation found an array of pathological changes in the uterus including: hematosalpinx, endometriosis, chronic inflammation of the fallopian tubes, and acute and chronic myometritis. Eight percent of the women developed intense cyclic pain that necessitated a hysterectomy within 5-40 months post endometrial ablation.

Informed Consent That Isn’t

Recently, Hormones Matter has begun to explore the legalities of the medical informed consent, here and here. With all the adverse effects associated with endometrial ablation, especially the need for hysterectomy later, one must question whether women are informed about those risks. As I have found when investigating this topic, there are few long term studies on endometrial ablation. Many of the articles cited for this post come from paywalled journals that are not readily available to either the patients or the physicians – the costs are prohibitive for both. So it is not clear whether the physicians performing these procedures are aware of the long-term risks associated with ablation. And as one physician suggests, neither the pathologists nor radiologists responsible for diagnosing post ablation pathology are trained to recognize these complications. Without data or access to data and without training, one wonders whether it is even possible to have informed consent for a procedure like ablation.

You know the sayings “never mess with mother nature” and “you never know what you’ve got ’til it’s gone?” We need to heed those words at least when it comes to treatments that can’t be reversed or stopped! At the very least, we have to become thoroughly educated about the risks and benefits of any given medical procedure.

This post was published originally on Hormones Matter in May 2013.

Weight Gain and Hormonal Contraceptives

by Kerry Gretchen

Published on June 8, 2016

6526 views

Once upon a time, a 26-year-old woman went to her doctor and asked to be put on the new birth control pill that allowed women to only have four periods a year. She had seen it advertised on television. Four months later, 15 pounds heavier and suffering from mild depression, she returned to the doctor feeling miserable. The doctor told her the weight gain and depression were not from the pill because those were not side effects of hormonal birth control. This left the young woman feeling like it was her fault she had gained weight. Needless to say, that didn’t help with the depression. But she switched back to her original birth control pill and lived happily (but heavily) ever after. Well, until it gave her a stroke two years later.

I’ve written a lot about my stroke and about blood clots and birth control pills, but there are many other side effects from hormonal birth control. More often than not, we are told that these side effects do not exist; that they are all in our heads. Are they? Or are we simply being ignored and lied to?

What Does The Research Show?

When researching my thesis, I was interested in finding out what women knew about the risks associated with birth control pills. I created a survey based on a published study by researchers in this field. The original study outlined which side effects were and were not associated with birth control pills. The survey used in my thesis demonstrated the following:

“When the women were asked to select which risk factors were associated with birth control pills, most women, 76.7% of the 313 who answered the question, selected blood clots. Weight gain, which is not considered a health risk or even a side effect of birth control pills, was the selection most chosen (79.9%).”

The number one answer most women chose was weight gain, yet all the research I read said that weight gain was not a side effect of birth control pills. My own doctor had told me it wasn’t a side effect when I stood before her 15 pounds heavier after switching pills. Even as I wrote my thesis, I wondered how we could all be so wrong. Well, it turns out we weren’t. The pill can cause weight gain. And they knew it could, even back in 1970. The following is testimony from the Nelson Pill Hearings.

Dr. Francis Kane (page 6453): [In a Swedish study of 344 women] Of the 138 women who stopped using the medication, weight gain and emotional disturbances were the most frequently reported, 26.1 percent and 23.9 percent.

Dr. Louis Hellman (page 6203): My private patients… come off the pill because of a host of minor reactions. The most prevalent one is weight gain. The modern American girl just does not want to gain 5 or 10 pounds if she can help it.

What About Today’s Birth Control Pills?

I took another look at what I could find out about weight gain and hormonal contraception now. According to WebMD:

“When birth control pills were first sold in the early 1960s, they had very high levels of estrogen and progestin. Estrogen in high doses can cause weight gain due to increased appetite and fluid retention. So, 50 years ago they may indeed have caused weight gain in some women. Current birth control pills have much lower amounts of hormones. So weight gain is not likely to be a problem.”

Maybe larger doses of hormones cause more weight gain. But I don’t think that means that smaller doses cause none. And what about taking that smaller dose for a decade or more?

Most current medical information dismisses weight gain completely. On the Mayo Clinic website’s FAQ page for birth control pills it says:

“Do birth control pills cause weight gain? Many women think so. But studies have shown that the effect of the birth control pill on weight is small — if it exists at all.”

That’s right, ladies. Just like your menstrual cramps, weight gain on the pill probably doesn’t exist. But wait, the Mayo Clinic says there are studies that show hormonal contraceptives don’t cause weight gain. Where are these studies?

Inconclusive? Or Incorrect?

A recent meta-analysis (2014) conducted by Cochrane (an independent group that reviews randomized controlled trials and organizes medical research information) found the following:

Available evidence was insufficient to determine the effect of combination contraceptives on weight, but no large effect was evident. Trials to evaluate the link between combination contraceptives and weight change require a placebo or non-hormonal group to control for other factors, including changes in weight over time.

You mean to tell me in the 40+ years since the Nelson Pill Hearings we haven’t been able to conduct one conclusive study to determine how hormonal contraception affects weight? Perhaps it’s time to start asking why. All those studies that provided insufficient evidence, who funded them and who might stand to lose if they were conclusive? I don’t know for sure but I do know that one of the few things women fear as much as an unintended pregnancy is weight gain. Even the staunchest feminists among us often fret over our figures.

According to Naomi Wolfe’s The Beauty Myth, “thirty-three thousand American women told researchers that they would rather lose ten to fifteen pounds than achieve any other goal.” Setting aside how disturbing that is, we can easily see how the fact that hormonal birth control can cause weight gain might adversely affect the pharmaceutical industry’s bottom line (pardon the pun).

At the Nelson Pill Hearings, there were at least a half dozen experts–doctors specifically chosen to testify before Congress–that mentioned weight gain as a side effect of the birth control pill. Including ones who admittedly worked for the pharmaceutical industry. But now, nearly five decades later, the research is inconclusive. Doctors are telling patients that hormonal contraceptives are not responsible for weight gain, yet 80% of women surveyed thought that weight gain was a side effect. Like so much surrounding the pharmaceutical industry, something doesn’t add up here. And who is paying the difference? Women. Yet again we are being told that it’s all in our heads. Have you had experience gaining weight on hormonal birth control?

Further Testimony on Weight Gain

This testimony from the Nelson Pill Hearings just scratches the surface of the side effects caused by hormonal contraceptives. I’ll be expanding more on a lot of this testimony in future articles. But perhaps Dr. Victor Wynn explained most succinctly how these side effects manifest when he testified (page 6303):

When I say these changes occur, I mean they occur in everybody, more in some than in others, but no person entirely escapes from the metabolic influence of these compounds. It is merely that some manifest the changes more obviously than others.

Dr. Robert Kistner (page 6082): I tell her about the side effects plus a weight gain edema and I may even give her a prescription for this.

Dr. John Laragh (page 6165): We do not have any firm clues. But it does look as though those who accumulate salt and water and gain weight on the oral contraceptives might be especially vulnerable [to increased hypertension].

Dr. Francis Kane (page 6449): Complaints of moodiness, being cross and tired, alterations in sexual drive, weight gain, edema, and insomnia were commonest in the group using the estrogen-progestin group.

At the hearings, Dr. Herbert Ratner (page 6737) was asked by James Duffy, minority council:

Mr. Duffy: You use the word “disease” here. Disease to me seems to be a pretty strong word and I am just curious why you would consider weight change to be a disease?

Dr. Ratner: You realize that obesity is one of our major problems in this country.

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.

Sharing My Story, Feeding the Hope

by Kerry Gretchen

Published on May 31, 2016

6866 views

When I took this job—combing through the Nelson Pill Hearings, researching and writing about the risks with hormonal birth control, working on the Real Risk study—my mother said to me, “Are you sure you want to do that? Are you sure you want to dig up all that stroke stuff?”

“Mom,” I said, a little exasperated. “It’s been 10 years. I’m fine with it.” Duh was close to what I was thinking but didn’t say. The weird thing is, my mom may have been right. Okay, that’s not entirely fair. My mom WAS right. (NEWSFLASH: My mom is right sometimes!) This job has been hard, and not just because reading congressional testimony is draining and because I’m so passionate about this work. It has been hard because it has forced me, nearly every day since November, to examine what happened to me.

I had a stroke because of hormonal birth control and for a long time I believed my doctors (and much of the research I found when writing my thesis) when they said that I was special. That this sort of thing didn’t happen much. Because I thought I was an anomaly, I was able to bury my head comfortably in the sand and call that “dealing with it.”

It hit me that I had not been dealing with it when I sat in a room with Karen Langhart and the parents of four other young women who had died while using hormonal birth control. As they shared their stories, tears slid down my face. I knew I was not an anomaly. It could have easily been my mom sitting in that room and not me.

I’ve written about how important it is to share patient stories. And we’ve written about the importance of the Real Risk Study. I’ve participated in the study. I’ve written my story (all three parts of it: Part 1, Part 2, Part 3). But it has not been easy for me. Which means it has taken unfathomable courage and strength for the families who have lost their daughters. I had to face a sadness that was buried deep under a layer of “getting on with life.” But for these families, the sadness isn’t buried because there is no “getting on with life.” It’s right there, out in the open, raw and exposed. Their lives will never look remotely the same.

When we publish an article about a health crisis or a death related to hormonal birth control it is not because we are alarmists. It is not because we are whiny or dwelling in the past. It is because this work is important. This study is important. I was not an anomaly. The young ladies who were killed by hormonal birth control are not anomalies. They are daughters, wives, sisters. They could be you or someone you love. We share because we are not alone. We are a group of survivors and advocates.

One of the most amazing things that has happened to me from taking this job is that, despite the challenges, it has helped give meaning to what happened to me. I’ve met and connected with amazing people. While much of it has been cloaked in sadness, the thing that shines even brighter in these interactions is hope. And hope is healing. By sharing my story and participating in this research, I am feeding that hope.

It is my wish that you will help feed that hope, too. If you are a survivor of a blood clot or a family member of someone killed by a blood clot and you have been hesitant to participate, now is the time. If you aren’t, I guarantee that you know someone (a friend or relative or a friend of a friend) who has been affected by a blood clot while on hormonal birth control. Now is the time to share this link. Because there is hope in sharing. And healing in hope.

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.

A Stroke from Hormonal Birth Control: Part 1

by Kerry Gretchen

Published on March 15, 2016

7274 views

Stroke from hormonal birth control - Kerry Gretchen

I opened my eyes and saw my husband, Josh, holding my hand, looking very serious. He was telling me that we would get through this, that even if I had to learn to walk again, that whatever it took, we would be okay. I remember thinking, “It’s okay, honey. I just have a headache.” We had been married for a year. The next time I opened my eyes Josh was leaning over me. I was on my side in the emergency room and the doctor had just asked him to hold me steady while he gave me a spinal tap to check for meningitis. Josh held me so firmly, terrified by the risks of a misplaced needle, that his arms were shaking from the strain. I tried to tell him, “Don’t worry about holding me. I can’t move anyway.” I had lost the use of my limbs hours before, maybe even days. And now it seemed my power of speech was gone, as well.

The headache had started a month earlier. I remember exactly when because it woke me in the middle of night and I had never had that happen before. We were visiting friends in New York right before Christmas. I got up and took some ibuprofen and didn’t give it much more thought. But it never really went away. I saw a chiropractor. I took more ibuprofen. I checked out a book on meditation. By the time I saw a gynecologist, I also had an unexplainable pain in my left thigh. The gynecologist told me the pain in my leg was probably just a muscle strain and she prescribed Imitrex for the headache, a migraine medication that shrinks the blood vessels in the brain.

The migraine medication made the headache go from dull and persistent to unbearable. I visited a health clinic where the doctor suggested an appointment with a neurologist the following week. That night my left arm started to go numb. I called a local pharmacist who said it might be my birth control pills. That’s crazy, I thought. I’ve been on them for 10 years. I slept on the couch because I couldn’t bear the thought of having to move to the bedroom. The music that had been on the television roared in my head like it had been trapped there on repeat. The next day I called the health center again and they told me to go to the emergency room.

Over the course of the next two days I would take 3 ambulance rides, be sent home from the emergency room twice, begin to lose all control of my body, and be given a very stern lecture by a nurse who thought I needed to learn how to “manage my stress.”

The spinal tap in the emergency room was not the first time Josh had to hold me down. Earlier that day, he tried to restrain me while my body thrashed wildly. During the seizure, I told myself that if I just calmed down, it would stop. It must all be in my head since the doctors said it was just a “tension headache.” We locked eyes, both of us terrified of what was happening to me. When the shaking finally subsided, he asked me if he should call 911. Again. All I could do was nod.

I did not have meningitis. There were blood clots in my brain and because they had not been treated right away, one of the veins in my head had burst and was bleeding. I was having a massive stroke.

Later, Josh would tell me about overhearing the neurologist and the neurosurgeon arguing. The neurologist thought they should operate. The neurosurgeon thought it was too risky. Neither wanted to be there. It was Martin Luther King, Jr. day. (I have since learned never to get sick on a holiday weekend.) In the end, they didn’t operate. I don’t remember exactly when they told me that I had had a stroke. But I know I had no understanding of what that meant. (I find that even now, ten years later, I am still learning.) As far as I knew, that was something that happened to old people. I was 28 years old.

At some point, they told me that I had a clotting disorder and that this genetic anomaly coupled with the hormones in my birth control had caused my stroke. This wouldn’t mean much to me until after I learned how to walk again, do math again, shave my own armpits again.

Not long after I was discharged from the hospital, I had an allergic reaction to the anti-seizure medication. I returned to the emergency room at the request of my neurologist. This time they immediately took me to an examination room. When the doctor walked in, the same doctor who had finally diagnosed my stroke, he said, “I’m so glad to see you. I didn’t think you were going to make it.”

That statement stayed with me throughout my recovery. Because though intellectually I understood that the stroke could have killed me, I never really understood the gravity of the situation until he said that to me. And it made me begin to really consider what happened to me and why.

I was first prescribed birth control pills at the university health clinic my freshman year of college. I wasn’t even sexually active at the time, it just seemed like a rite of passage. Why did no one tell me about the dangers of the pill? I wondered. And why didn’t anyone tell me that I could have a clotting disorder without knowing it? How many other women have this clotting disorder? How many other women have had blood clots? How many have actually died from hormonal birth control? Throughout my recovery, I struggled with these questions. Eventually, I even tried to answer some of these questions with my master’s thesis. For more on my recovery and thesis work, see Part 2 of A Stroke from Hormonal Birth Control.

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.

Testosterone and Breast Cancer: Quick News

by Chandler Marrs, PhD

Published on March 2, 2016

7485 views

Estrogen receptor positive (ER+) cancers account for approximately 75% of all breast cancers. In ER+ the cancers respond to the presence or absence of estrogens (estrone, estradiol). Almost 65% of ER+ cancers are also progesterone receptor positive (PR+) meaning the cancer also responds to presence or absence of progesterone. In contrast, the HER2 strain of cancers involves an over production of the protein epidermal growth factor. HER2+ cancers are not amenable to hormone treatments and have not been linked to hormone levels, until recently.

A study published in Cancer Epidemiology Biomarkers and Prevention (Sieri et al. 2009) found that high circulating levels of testosterone were associated with an increased risk of breast cancer in menopausal women. The association was strongest for ER+ cancers, but was also present ER- cancers such as the HER2 strain. Though the association between testosterone and HER2+ cancers was not as strong as observed in the ER+ cancers, it was significant and merits additional research.

The role of androgens in breast cancer is controversial and there are differences between the hormone levels locally in the breast tissue versus those in circulation. Nevertheless, this study suggests that broader research, diagnostic and potentially treatment approach may be warranted.
To read this study go to: (Cancer Epidemiol Biomarkers Prev 2009;18 (1):169–76).

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

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