hormonal birth control Archives

Let’s Talk About Sex, Baby: Hormonal Contraception & Libido

Published on April 4, 2024

5085 views

“If sexuality is one dimension of our ability to live passionately in the world then in cutting off our sexual feelings we diminish our overall power to feel, know, and value deeply.” –Judith Plaskow

This quote raises an interesting question. If owning our sexuality gives us power, then who benefits from limiting that power? And why is limiting that power an acceptable side effect of hormonal contraception?

During the Nelson Pill Hearings, Dr. M. James Whitelaw testified (page 6015): “How many adult males would be willing to take an oral contraceptive faithfully if they were told that instead of a possible 50-plus adverse side reactions only one remained, that being the possible loss of sex drive and libido? [Laughter]”

What is the implication here? Women can be denied their full sexual capability but the idea of men suffering the same is laughable? Holly Grigg-Spall speaks to that in her book Sweetening the Pill (page 50):

“The pill’s impact on the libido has been publicized but it is generally dismissed with humor. The libido is seen as distinct from women’s emotional and physical health, whereas with men it is linked. The female sex drive is not celebrated or seen as essential to her femininity or sexuality… Research that indicates that lowered libido is experienced by a large number of women on the pill is undercut by the cultural assumption that most women have little real interest in sex regardless of this drug.”

Sexy But Not Sexual

And she’s right. Women are constantly told to be sexy but not sexual. It would seem that hormonal birth control would provide exactly that type of woman. One who could have sex without the consequence of getting pregnant, therefore highly desirable to men; but one who could not fully embrace the power of her own sexuality due to a medication-induced lack of libido. Is this really what we want? A society of women that are physically available for sex but completely disconnected from the powers of her own sexuality? Again I will ask, who benefits from keeping women in that robot-like state?

“The quality of a woman’s sex life, unlike that of a man’s, does not seem to concern the drug companies or the (male) research establishment… Women who reported changes in their sex drive often heard that old refrain: ‘It’s all in your head.’ But the male sex drive is considered so important by the drug companies that it is always studied in conjunction with new male contraceptives, just as it is almost always mentioned in arguments against the condom.” –Barbara Seamen in The Doctors’ Case Against the Pill

It’s true. We hear the argument that condoms lessen sensation during sex. But for whom? Men. Yet for women who use hormonal birth control, low libido and loss of sensation during sex are some of the least dangerous side effects they can expect. Heather Corinna put it so well in her article “Love the Glove” that even Grigg-Spall quoted her:

“If we’re going to talk about condoms changing how sex feels, we need to remember that something like the pill does too, and, unlike condoms, it changes how a woman feels all the time, both during and outside of sex… Other methods of contraception can cause pain and cramping, unpredictable bleeding, urinary tract infections, depression and a whole host of unpleasant side effects. Condoms are the LEAST intrusive and demanding of all methods of contraception, even though some guys talk about them — without considering this perspective — like they’re the most. If guys could feel what life can be like on the pill, use a cervical barrier or get a Depo shot, they’d easily see condoms for the cakewalk they are.”

It’s not just the pill that is damaging to women. As Grigg-Spall explains, Depo Provera (“the shot”) is specifically used to decrease sex drive in sex offender rehabilitation programs. There is something seriously wrong when a birth control option offered to women is the exact same medication used as pharmaceutical castration for sex offenders.

FSD – Female Sexual Dysfunction or Female Sexuality Discouraged?

According to a study of female German medical students published today in The Journal of Sexual Medicine, women taking non-oral and oral hormonal contraceptives were at highest risk of Female Sexual Dysfunction (FSD). Interestingly, women using non-hormonal contraceptives were at lowest risk for FSD, more than women not using any contraceptive.

“Sexual problems can have a negative impact on both quality of life and emotional well-being, regardless of age,” said researcher Dr. Lisa-Maria Wallwiener of the University of Heidelberg, Germany. “FSD is a very common disorder, with an estimated prevalence of about two in five women having at least one sexual dysfunction, and the most common complaint appearing to be low desire.”

Side Effects – Affecting More Than Just the Patient

Why is this okay? Why do we accept this? If a woman is experiencing sexual dysfunction, it not only affects her but it affects her partner as well.

Dr. Philip Ball testified about this very problem at the Nelson Pill Hearings back in 1970 (page 6493): These unhappily newly married women do not know if it is the wrong man, the wrong town, the wrong job, the wrong year, the wrong apartment, or yet something else, when it is really many times the wrong pill.

And he’s not incorrect. Research now shows that taking birth control pills affects women’s taste in men. According to this article from the Scientific American, women on the pill seem to prefer men who are genetically similar to themselves.

“Women who start or stop taking the pill, then, may be in for some relationship problems. A study published last year in Psychological Science found that women paired with MHC-similar men are less sexually satisfied and more likely to cheat on their partners than women paired with MHC-dissimilar men. So a woman on the pill, for example, might be more likely to start dating a MHC-similar man, but he could ultimately leave her less sexually satisfied. Then if she goes off the pill during the relationship, the accompanying hormonal changes will draw her even more strongly toward more MHC-dissimilar men. These immune genes may have a “powerful effect in terms of how well relationships are cemented,” says University of Liverpool psychologist Craig Roberts, co-author of the August paper.”

How any of this is connected to relationship issues, divorce rate, infertility, one can only speculate. But it’s clear that the sexual side effects caused by hormonal contraception are no laughing matter.

Sex is a big part of life. The ability to connect with each other and derive great pleasure from sex is not just a perk of being a human. It is our birthright. And to deny that birthright is to limit our power as women. That’s not what I consider an “acceptable side effect.”

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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.

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This article was published originally on July 14, 2016.

The Promise of Drug Safety

by Mike Gaskins

Published on August 24, 2023

1484 views

What they say:

“Birth control is the safest, most tested drug on the market.”

What their tone says:

“Did you just crawl out from under a rock?”

I am not even sure the drug companies say this anymore. They don’t need to. It is buried into the psyche of a significant number of people who are willing to repeat it ad nauseam. Consequently, the masses hear it so frequently that they accept it as truth. It has become a part of our collective consciousness that few people question.

These implied messages that exist as a sort of “common sense truth” in our culture are not limited to birth control. Drugs occupy such status in our zeitgeist that you could probably quote a mantra implying the safety of nearly any of the most familiar drugs.

“Statins have been around for decades, and they’re the most prescribed drug in the world.”

“Accutane has to be safe. They wouldn’t give teens a dangerous drug for something as innocuous as acne.”

“Ritalin is a cute little pill they give kiddos to help them sit still.”

As Georg Cantor famously said, “A false conclusion once arrived at and widely accepted is not easily dislodged; and the less it is understood, the more tenaciously it is held.”

Beyond Statins and Birth Control

Pharmaceutical companies cultivate and manipulate these implied messages to their benefit. They know that we want their pills to work, and we want to believe any bad outcomes are rare. Consequently, we do not question the commonly accepted messages… until it is too late.

It would be an understatement to say Larry and his wife, Carly learned that the hard way. As Carly studied to become a nurse, she became more aware of the side effects associated with the steroids in hormonal birth control. She assumed she was safe because she had been taking them without issue since she was 18 years old.

However, when she turned 32, she discovered the limits of that carefree confidence. While undergoing a scan for something else, Carly learned that her liver had several large lesions, known as adenomas. The doctors told her they were a rare side effect caused by her hormonal birth control, and if left unattended, they could become cancerous. The doctors highly recommended surgery to remove the lesions.

The implied message behind the stated “rarity” of her condition was that Carly had simply lost the genetic lottery. She did not question how rare adenomas as a birth control side effect actually are.

Ultimately, she elected to have the expensive and very painful surgery to remove the large lesions. Then, she and Larry returned to life as normal. By itself, this event was not enough for them to seriously question Big Pharma’s implied messages – because said messages are “not easily dislodged.”

A Weakened State

A couple of years later, Larry started to notice he was losing strength in his arms and legs. At work, he found it harder to lift gear that had previously been no problem. As things progressed, he noticed that all his motor skills were getting “sloppy.” His feet felt floppy and kind of slapped as he walked.

He discussed it with Carly, and they agreed that it probably had something to do with his Ehlers-Danlos syndrome, an inherited disorder that had affected his joints for most of his life. They hoped that building in more time to rest and not overdoing it at work would help. However, over time, things progressed, and Larry feared it was something worse. Lately, he had trouble eating correctly and swallowing. Even breathing had become more of a task than any involuntary bodily function should be.

The couple began visiting specialist-after-specialist in an effort to untangle the mystery that was quickly growing more urgent. Multiple tests, scans, and even a $20,000 whole exome study of his DNA offered little more than educated guesses. The couple was told that Larry could have everything from ALS (Lou Gehrig’s disease) to limb-girdle muscular dystrophy, and with each pseudo-diagnosis, the implied message was that he had been issued a death sentence.

The specialists made little effort to hide that they were grasping for straws with each diagnosis; many seemed uninterested in the challenge of digging for a real, substantiated diagnosis. But, Larry and Carly found hope in one neurologist who seemed genuinely interested in finding answers for them. Her passion and dedication kept them going — right up until it became the vehicle that delivered them to their lowest point, when she told them that she was moving away because New Orleans had become too unsafe.

Out of the Darkness

Mentally, the couple felt like they were flailing out of control. With the exodus of their favorite doctor, the insurance company said their only option was a residency clinic. Larry was not excited about turning over his complicated case to a resident. How could he expect a medical student to find answers to an enigma that had stumped so many experienced physicians? But, if something is presented as your only option, you tend to roll with it, and that’s what Larry did.

The sympathetic young doctor-in-training listened intently as Larry laid out the narrative of his complex “patient history.” When he mentioned their attempts to land an appointment with the leading neurologist in the state of Louisiana, the resident said he might be able to facilitate a meeting (if not an appointment). That doctor’s office was right across the hall, and the resident thought he might be able to arrange something.

This was huge! The doctor’s schedule was packed, and there was no chance he would be taking new patients anytime in the near future.

Indeed, the good doctor agreed to meet with them after completing his rounds one evening. They sat on a hospital bed at the end of a long corridor waiting as the sun outside faded into evening. The anticipation made the wait seem longer, but it was worth it the moment he stepped into the room in his jeans and a polo shirt.

While this was not an appointment, the couple clung to a hope that his forensic analysis of their journey could lead to some pearls of wisdom. Maybe he could steer them in a new direction – anything that could help them feel like they weren’t just wandering through the desert alone.

For the next two hours, they shared every detail they could recall. The doctor interjected occasionally to ask questions. Most of his curiosities had already been explored. Disappointment was welling up in their souls. As the meeting began to wind down, it felt like this was going to be yet another pointless waste of time, but at least they did have the curiosity of a great mind that was now thinking about their case.

Then, as he was leaving the room, the doctor turned around and asked a question that changed the course of their lives forever, “Are you taking statins?”

Are You Taking Statins?

Even though Larry affirmed he was taking Lipitor and that the symptoms had commenced shortly after he started taking the drug, the doctor said it was a long-shot, but he asked them to run a test for anti-HMGC Reductase antibodies.

The test came back positive, and Larry was informed that he had a VERY rare disease known as statin-induced necrotizing autoimmune myositis. The implied message – he had really lost the genetic lottery. What are the chances that one couple could end up with two of these lottery tickets from hell?

We will get back to that. But first, this was not the end. It was the beginning of a different journey!

Sure, Larry had a diagnosis in hand, but he also had a LONG road ahead of him. The “implied messages” became much more overt.

What they said:

“We don’t see you going back to work…”

“You’re on disability, right?”

“You can get extra services if you will just apply for Medicare…”

What their tone said:

“This is your lot in life.”

“You will never be independent again.”

“Give up!”

Larry and Carly literally had to fight for his right to be self-sufficient. Carly spoke up when she thought his prednisone dose was too high. She used her medical knowledge as a nurse to be a strong advocate for her husband.

When one doctor expressed doubt that Larry would ever be able to regain his strength and essentially suggested they should give up, Carly exclaimed, “Get him back to 40%, and he will run the rest of the way!”

Striving for Normal

The trek back to (almost) normal has been and will continue to be arduous. Here’s what the treatment looks like that keeps Larry alive. Two days every month he goes into his doctor’s office to receive an IVIG (Intravenous Immunoglobulin) injection, which is a biological agent of pooled antibodies from thousands of people around the globe. Each injection takes six or seven hours and costs $64,000. That’s a little over $1.5 million per year.

On top of that, Larry takes 21 pills every day. That costs him about $500 per month out-of-pocket with his insurance plan.

So far, Larry’s insurance has covered the treatment, but he fears the day will come when they find a way to drop him. He has already had a taste of what life would be like without this treatment plan. The demise would be quick. His ability to walk and lift objects would go first, then his ability to speak. After that, he would need a feeding tube and then a respirator that would simply prolong the agony.

But, Larry does not dwell on what could be. He is too busy living his life and being grateful that things are (almost) back to normal. With that normalcy, Larry and Carly have begun to question some of the “common sense truths” and “implied messages” tied to the drug industry, “truths” that might actually be more like the “false conclusions” Georg Cantor spoke of.

Cholesterol as a Four-Letter Word

Most Americans grow up thinking of cholesterol as a bad word. More recent attempts to distinguish between good and bad cholesterol have done little to shift this perception. Before questioning some of the commonly held beliefs about statins, it is necessary to reframe our understanding of cholesterol.

First, your liver and intestines make cholesterol naturally, and let’s be clear – that is a good thing! You need cholesterol because it plays a key role in the production of vitamin D, bile, and hormones. It is also an essential building block of cell membranes throughout your body, and only about 20% of your cholesterol comes from the foods you eat.

Cholesterol is a waxy substance transported throughout the body by particles made up of proteins and fats, known as lipoproteins. There are two main classifications of these particles: high-density lipoproteins (HDL) and low-density lipoproteins (LDL), which you most likely know of as “bad cholesterol.”

The belief is that these low-density lipoproteins can form fatty deposits in your blood stream. If their levels get too high, they can interfere with blood flow and could eventually contribute to blood clots.

The Role of Statins

By 1976, the villainization of cholesterol had been in full-force for years, and researchers knew that the enzyme, HMGC reductase, controlled the rate of cholesterol production in the body. So, Japanese microbiologist, Akira Endo’s discovery of a biological agent that inhibited the production of this enzyme sent the drug industry into a frenzy.

From there, the developmental plan was pretty straightforward. They would create a drug that throttled the liver’s natural production of HMGC reductase. This would lead to less cholesterol, and theoretically less heart disease. And voila, you would have another new drug that could be handed out like candy.

Today, statins are the most prescribed drug class in the United States, with nearly 40 million people taking them every day. They also lead the way in the United Kingdom with nearly six million Brits taking them daily. However, continental Europe has taken a different approach, and the fallout has led to what has been labeled a Statins War.

While the US and UK have moved toward prescribing statins for anyone with a 5-10% risk of cardiovascular event, other European countries contend that the risks of side effects do not justify such a low threshold. For many of these countries, statins are only prescribed to try and prevent a second heart attack.

What Are the Risks?

Critics suggest that even the attempt to isolate “bad cholesterol” is based on a fallacy. They maintain that the body produces both forms of the lipoprotein for a reason, and that there has been no evidence proving a link between LDL and heart disease. However, statins have definitely been linked to some significant side effects, such as increased risk of Type 2 diabetes, memory loss, and muscle damage. In fact, one of the most common complaints associated with statins is muscle pain ranging from mild to demobilizing, but the industry has made a concerted effort to downplay this concern.

They claim your chances of experiencing any kind of muscle pain is only about 5%. Despite being such a low percentage, the drug companies allege that enough people have heard about muscle pain as a consequence that it has spawned what the industry describes as a kind of phantom, psychosomatic pain. In a play on the term “placebo effect,” they call it a “no-cebo” effect. In other words, the pain you think you feel is not real.

Their ironic, illogical attempt at drug-splaining has made its way into your local doctor’s office as well. When physicians were at a loss in diagnosing Larry’s ailment, they suggested he might be faking the symptoms – this is a common philosophy of modern Western medicine – “When in doubt, gaslight the patient.”

Muscle Damage

Scientists do not yet know exactly how statins damage muscles, or why it affects some people more than others.

Statins were designed, developed, and marketed with the entire focus on how it affects the production of a single enzyme within the liver. It accomplished what they wanted, but they ignored the unintended consequences.

Anytime you throw a natural process out-of-balance, secondary effects will occur. Recently, a team at the Max Delbruck Center (MDC) in Berlin conducted a study to see what effect the removal of this central enzyme might have on muscle tissue. They discovered that some 2,500 genes in the cells regulated differently, and this altered the production of more than 900 proteins. The head of MDC’s Myology Lab, Professor Simone Spuler concluded, “It is quite obvious that normal amounts of statins applied as active substances exert dramatic structural, functional and metabolic effects on the muscles.”

So, we may not know exactly how statins damage muscles, but we can see mountains of evidence that confirm something unsavory is happening. Perhaps doctors should stop acting surly when they don’t have answers and focus on finding those answers instead.

Inner Strength (and an Awesome Wife)

There are a lot of things that Larry wishes would have happened differently, beginning with that fateful day when his doctor first prescribed Lipitor. His cholesterol test came back a little high for the first time ever and because of his family history the doctor strongly recommended he start statins. Larry asked if he could try exercise and changes to his diet first, but the doctor insisted.

Larry tries not to dwell on the past or things he cannot change now. He accepts that his diagnosis is incredibly rare. However, he also knows that it is probably severely under-diagnosed. Very few doctors have the patience and wisdom to sleuth out this diagnosis.

Beyond that, he knows that muscle damage in general is not nearly as rare as the industry would have us believe. Some studies show that up to 20% of people who take statins develop myopathy.

Now that Larry belongs to the world of those who have been injured by statins, other people share their stories with him. He is blown away by the number of people who tell him they had to stop taking statins because the muscle-related side effects were affecting their quality of life. This is not a rare problem.

In the end, Larry no longer cares whether he lost the genetic lottery or any of the other implied messages they may want to throw at him. He knows a lot of women would have run away after hearing what his recovery process was going to be like, but Carly showed a resolve and determination that was almost superhuman – still working her nursing job through the day and then coming home to help him sort through his recovery. Her dedication and faith in him is what inspired him to take off running when they got him back to 40%.

Though necrotizing autoimmune myositis will always represent a persistent, unpleasant wrinkle in his life, Larry celebrates the accomplishment – knowing that he has not let it define him nor dictate how he lives his life.

Carly, too, considers herself fortunate that the damage inflicted on her body by hormonal birth control was not worse, for it surely could have been.

A New Resolve

Ultimately, the monstrous attacks on their bodies at the hands of dangerously overprescribed pharmaceuticals solidified their marriage. Each had the opportunity to demonstrate their commitment, not only to each other, but to the oath that joined them in sickness and in health. In the battle, individually and collectively, they developed an immunity to the implied messages of modern medicine and the tone in which they are delivered.

In their triumph, they have become health advocates for themselves and take nothing the doctors say at face value.

Perhaps Larry and Carly’s spirit of determination can inspire us all to cling to this new, and very real “common sense truth.” We should strive to be advocates for our own health and make sure we are fully informed before consenting to any treatment, especially when it involves a drug that is handed out like candy.

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, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

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Hormonal Birth Control Plus Poor Diet Is a Recipe for Disaster

by CB

Published on August 14, 2023

2072 views

I am a 29 year old female who began experiencing a decline in my health at 25 years old. This was in 2020. At that point, I had been on hormonal birth control for nearly 10 years. I suspected the birth control was contributing to my ill-health but my doctor disagreed and continued to prescribe different forms to alleviate my symptoms. That did not work and only made things worse. When Depo-Provera was added, I completely crashed and have not recovered, nearly two years later.

When I first began to experience extreme fatigue, abdominal bloating, irritability, restlessness, and massive amounts of hair falling out, I went to my primary care doctor who could find no reason for it on basic bloodwork, except for a low vitamin D level (27mg/mL). They checked CBC, CMP, autoimmune markers, B12, a complete thyroid panel, Lyme titers, mono titers, and iron levels. Since everything was basically normal, my primary care doctor blamed it on my stressful job. At the time, I was working in the emergency room on the night shift. I was not getting the best sleep, and not eating that well either. I was lucky to eat one meal a day and then maybe a snack especially on my busy shifts. On my days off, I was so exhausted that I would eat maybe twice a day. My diet consisted of easy meals like grilled chicken, salads, granola bars, processed cereals, pizza, chicken nuggets, chips, bananas here and there, and overall not a lot of fruits or vegetables.

Enter Depo-Provera

Fast forward to the fall of 2021, after these symptoms persisted, my doctor decided to switch my birth control to the Depo-Provera shot. After taking this shot, havoc was wreaked on my body and brought me down to a level of non-functioning that I never knew existed. Over the next couple months and after taking only one depo shot, I began to experience debilitating symptoms of headaches, fatigue, achy joints/all over body pain that eventually progressed into episodes of heart-racing anytime I would change position. I also experienced shortness of breath, chest pain, difficulty swallowing, a complete loss of appetite, GI issues, brain fog, severely decreased ability to concentrate, severe restless leg syndrome, insomnia, and neurological symptoms so extreme it felt like my brain was “short circuiting” for lack of a better word.

One side of my body would become extremely numb, tingly, and feel weak without any clear deficits. I experienced severe muscle weakness, where it would feel like my body was doing everything it possibly could to keep me upright and breathing. It was so bad, I felt as though I couldn’t even grip my phone and just talking on the phone to family felt like I was dying. I could barely concentrate. I developed severe visual issues, a condition called visual snow syndrome, and still am dealing with it with no improvement. I also developed tinnitus and have a constant high pitched ringing in my ear. I am unable to handle any type of stress, multi-tasking, or any emotional upset without truly feeling like my body is dying from severe neurological symptoms. I became scared to leave the house alone because of these debilitating symptoms. I lost over 30 pounds from feeling so awful and a complete loss of any desire to eat. I would have to force myself to put in fluids or food.

Over the course of many months, I saw multiple neurologists, neuro-ophthalmologist, cardiologist, electrophysiologist, primary care doctor, ENT, TMJ specialist, otologist, binocular vision specialist, rheumatologist, had numerous ER visits, two hospital admissions. I even participated in vestibular/neurological physical therapy over the course of several months. I had multiple head MRIs and CTs of my head and neck, MRIs of my spine, and so much bloodwork looking for autoimmune causes. I had a colonoscopy, a camera down my nose to look at my throat, an audiogram, a sleep study, a tilt table test, an echocardiogram, a stress-echocardiogram, and they even attempted a lumbar puncture on me as well. Conditions such as blood clots, multiple sclerosis, any type of cancer or tumor, etc., were ruled out and the only thing they came up with was a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), a suspicion for “some type of migraine variant” and a deficiency in vitamin D and phosphorus on my bloodwork.

Could This Be Thiamine Deficiency?

Fed up and worsening, I paid out of pocket to go to a natural medicine doctor who did heavy metal and mold testing on me along with hormone testing. Nothing really turned up there and so I took it upon myself to order a full vitamin and mineral panel paying over a grand out of pocket. This panel revealed that my serum thiamine was one point away from being flagged as low (8 nmol/L). I then returned to my primary care and two different neurologists to ask if a thiamine deficiency could be the problem or at least part of it, especially after my own research and the known research that birth control depletes many B vitamins. All of the doctors told me that there was no possible way I could have a thiamine deficiency since it is added to so many foods in the United States. They also told me that I could just take a B complex vitamin if I was worried. Even after I told them I was hardly eating because I felt so sick and that when I was eating it was mostly foods like processed toast, frozen chicken nuggets, cans of soup, and other things of that nature, they still dismissed the idea of thiamine deficiency.

May-Thurner Syndrome

On top of all of the debilitating POTS and neurological symptoms, throughout my time on birth control I had complained to my GYN about persistent left sided pelvic pain. It felt like my labia was swollen and at times like something was bulging into my pelvic area. In 2019, I had a CT scan of my abdomen and pelvis done due to some GI symptoms I was having. An incidental finding on it was suspicion for pelvic congestion syndrome (PCS). The report stated that I had very prominent peri-uterine vessels and a dilated left gonadal vein. I took these results to my GYN at the time who clearly stated “PCS is a fake diagnosis and you don’t need to do anything with that.” Since I was young, in my early 20s, I didn’t take it too seriously. Again as time went on, I continued to have the pain and over the years my GYN kept changing my birth control and mentioned endometriosis and small ovarian cysts as possible causes. The birth control would help a little bit for a while but then I would have irregular bleeding and the pain would always come back. It wasn’t until after I took the Depo shot and came off of the hormones that things became worse.

I began to have severe left pelvic pain that persisted for months. I had transvaginal ultrasounds every 6 to 8 weeks to monitor recurring small cysts that they swore were not the cause of my pain. I was tested for PCOS and was negative for that too. It wasn’t until the end of 2022, that I had another transvaginal ultrasound and this one read as having a hydro-salpinx. I had a new GYN at the time who referred me to get an MRI done of my pelvis. This MRI came back as also showing “likely hydro-salpinx” on the left. Since I was having such severe pain, I was referred to a GYN surgeon who said in extremely painful cases it is recommended to take out the tube and it was pretty much nonfunctional when it was as swollen as mine. I elected to proceed with the surgery, as the pain was so extreme. Funny enough, after the surgery when the pathology came back there was no hydro-salpinx and my surgeon said he did not see any endometriosis when he performed the laparoscopy. He said he believed my MRI may have been misread since he did not see any indication of hydro-salpinx during the procedure.

As if that wasn’t enough, after the procedure I had a severe neurological reaction to the scopolamine patch they put on me during the procedure. I had so much testing for this. I was even in the hospital for 5 days with what they thought was “scopolamine patch withdrawal” even though I only had the patch on for 3 days like they told me to wear it.

Fed up and still in pain, I let it go for a few more months thinking it was just “scar tissue” from the surgery or some other easy explanation. It wasn’t until my POTS doctor recommended me to wear an abdominal binder/compression device around my stomach that things worsened so much that I was forced to figure this out. I began having severe left pelvic, hip, and leg pain after wearing this device for only 3 days. I went to the ER because the pain was so bad, but they could only find a small ovarian cyst on my left ovary. They didn’t even consider doing any other work-up. I was then sent to an orthopedic to look at my hip and back to my GYN. Neither could really give an explanation for this pain. Finally enough was enough, I went to a vascular doctor on my own accord to get this PCS, which no one seemed to take seriously, looked at.

At the vascular surgeon’s office, they did a vascular scan of my pelvis and abdomen and were quickly shocked to find that my left iliac vein was almost completely compressed causing my peri-uterine vessels to get almost no blood flow. They diagnosed me with something called May-Thurner Syndrome and said that they usually only see severe cases like mine in women who have had “5 or 6 babies.” I was 28 at the time with one previous ectopic pregnancy many years ago. They quickly scheduled me to get a stent of my left iliac vein placed, as my left leg had begun swelling bigger than my right due to the limited blood flow.

On the day of surgery, my left leg was 2 inches bigger than the right and I was in severe pain. They did a venogram with internal ultrasound and were able to tell me my left iliac vein was 85% compressed. So basically, I was getting no flow through it and hardly any return through that vein up to my heart. They also informed me that the birth control was probably masking the problem but also could have been worsening it when I was on estrogen-containing birth control. They said I was extremely lucky that I did not develop a blood clot, especially when I had taken Beyaz for several years. Now, I am on blood thinners for several months post stent, while waiting to see if this helps with my POTS symptoms at all. So far, I have not seen any improvement except that my leg is no longer swollen.

Still Seeking Answers

I don’t know if thiamine deficiency could be causing my issues, but I have not received any answers other than POTS and my recently discovered May-Thurner Syndrome. I have seen so many doctors and spent so much money with no improvement in my health. This all severely worsened after I took the Depo shot. I have been unable to work for months, was bed bound for a long time, and was completely unable to eat during the worst of my symptoms. Now, I am at least able to move around more than I was and leave the house for doctor appointments, but I am still not working and I am still searching for answers. I would like to feel better and get back to some type of semi-normal life.

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.

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Connecting the Dots: Health Problems, Hashimoto’s, and Hormonal Birth Control

by Mike Gaskins

Published on May 15, 2023

1934 views

I have always found it curious that many health-conscious women will pay more for meat and dairy products that promise “No Artificial Hormones,” but then don’t think twice about taking the powerful artificial hormones in birth control.

Based on observations from a recent work trip, I began wondering if this paradox could be just a strange quirk of human nature. I was working with a man who obsessed over everything he put in his body. He intently read nutrition labels to compare juices, perused the ingredients before purchasing a protein bar, and asked waiters at restaurants about their food preparation.

It is difficult to eat healthy when you are living on the road, and I was impressed by his commitment to doing so. He really took his health seriously. Then, one afternoon, he said he was going to take a break, picked up his laptop bag, and pulled out a pack of unfiltered Camels.

I wondered what kind of compartments must exist in his brain for this to make sense, and it brought my mind back to the women who make a concerted effort to avoid artificial hormones… except when they don’t.

The Perfect Example

I might have also wondered how my brain could be so de-compartmentalized that his smoking immediately triggered thoughts of birth control, but this isn’t about me. So, I’ll save that for the therapist.

Meanwhile, his dichotomy of action had piqued my interest, and I was unsure where my curiosity would lead me. Then, I met the perfect woman to help me take a deep dive into the topic.

Brandy Searcy has worked as a developmental scientist for pharmaceutical companies for over a decade. As the daughter and granddaughter of nurses, she grew up immersed in conversations centered around healthcare. So, pursuing a PhD in organic synthesis seemed almost a natural extension of her genetics and heritage.

Through her work, which has included forays into cancer research and pesticide development, she honed a keen understanding of endocrine disruptors. Her concern over xenoestrogens in health and beauty products led her to develop Rain Organica, a line of skin care products designed specifically for women looking to detox their lives.

I met Brandy when she invited me on her podcast to talk about my book.

Birth Control and the Compartmentalization Conundrum

After we finished recording, Brandy mentioned that she could not believe how long it took her to connect the dots and realize that so many of her problems were linked to hormonal birth control. This opened the door to a fascinating discussion.

As you might imagine, her family was deeply vested in Western medicine. So, when she began to battle acne at around the age of 14, her mother did what any loving mother would do. She drove her around the state of Georgia trying to find a dermatologist who would conjure up a magic potion to make her acne worries vanish.

After a few years and some bad experiences with Accutane, Brandy’s mindset began to shift. It was around the age of 20 that she decided that she would “treat my skin as an organ to be loved rather than as a battleground.”

Although she had identified the problems with Accutane, it would take another 20 years for her to recognize the role hormonal birth control was playing in her health struggles. Consequently, this would become the first of many milestones she would later identify as missed opportunities to connect the dots.

Living Both Sides of the Coin

“It’s almost like there were two of me. One side was touting this new, healthy approach to life, and the other side was completely ignoring the effects of hormonal birth control on my body.”

When Brandy reflects back on those days before the blinders came off, you can see clouds of guilt and maybe a hint of embarrassment cross her eyes. She says there were any number of events that should have been enough to make her see the light earlier. Like the time red flags and sirens went off in her head when her doctor suggested a form of birth control because the “hormones were localized.”

Looking back at it now, she laments, “If she (the doctor) thought hormones can be localized, why didn’t I question her wisdom on prescribing me birth control in the first place?”

Beyond the common misrepresentations by doctors, Brandy can pinpoint some very specific, significant events in her personal and professional life that she believes should have been enough for her to walk away from hormonal birth control.

Missed Warning Signs

“It’s mind-blowing to me that I couldn’t let myself connect the dots. How I couldn’t see it is beyond me.”

Brandy still feels overcome with dismay as she recounts the significant events, the missed warning signs. Here is her summary of those key events:

2008 – Right leg numbness – The doctor thought she might be experiencing transient ischemic attacks (TIA) caused by the synthetic estrogens in her birth control. He told her to stop taking it until they could identify the culprit. The issues turned out to be structural rather than a stroke, and she returned to The Pill without a second thought.

2012 – Lyme disease – Brandy became very ill. As they worked through the process of diagnosing her illness, the doctor told her to stop taking birth control for six months. During the course of testing, they learned that her ANA and CRP levels were high. Ultimately, she was diagnosed with and treated for Lyme disease. Once again, feeling better, the diagnosis was taken as an exoneration of hormonal birth control. She forgot all about concern for her ANA and CRP levels, and started right back on The Pill.

2012 – Literal warning signs – That same year, she visited a facility that previously manufactured synthetic estrogens. As she walked through the plant, she noticed the bright red “Carcinogen” signs everywhere – on the walls, on the pipes – literally everywhere. Even as one of her co-workers told her this is where estrogens used to be made, she never connected the danger and all these literal warning signs to the same little pill she was taking every day.

2016 – No periods – Brandy was already experiencing gall sludge when her gynecologist recommended a different birth control formulation that, when taken continuously, would allow her to never have a period again, right up until menopause. She loved the idea of eliminating her period and didn’t even make the connection when signs of Hashimoto’s thyroiditis began almost immediately after switching to this brand.

2017 – Gallbladder disease – She had to have her gallbladder removed. While Brandy was still unaware of hormonal birth control’s link to gallbladder issues, she also had a family history of gallbladder disease that kept her from even considering The Pill’s role in her gallbladder’s demise.

2018 – Hashimoto’s diagnosis – After two years of tests, Brandy was diagnosed with Hashimoto’s thyroiditis, yet another disease that has been linked to birth control use. This was the event that would finally open her eyes, but the realization still took a circuitous route as it wasn’t the diagnosis itself that helped her make the connection.

When Western medicine told this self-described type-A control freak that there was no cure, she began digging for herself and discovered a book on treating your thyroid using Ayurveda techniques.

Ayurveda is an alternative form of medicine originating from Asia, which focuses on the necessary balance of internal and external influences to maintain proper health. And, it provided the shift in mindset that finally caused Brandy to question birth control.

Looking back at everything now, Brandy says, “We are not made to live in a diseased state. We are made to be healthy, and if we aren’t healthy, it isn’t because our body is broken, it’s because we are putting something in that is making us not healthy.”

Seeing the Light

I asked what she might tell other young women to help them wake up to the dangers of The Pill, or at least give more thought to its potential risks. This led to another interesting rabbit hole as we discussed the various factors that prevent young women from truly contemplating the dangers. Here are some of the variables we discussed:

Lack of reproductive education – Young women aren’t taught about the phases of their cycle, nor how its ebbs and flows can actually help them monitor their health, nor are they educated on how their cycles may change over time.

In Brandy’s case, she had very heavy, irregular, and painful periods as a young girl. No one ever told her this was common when going through menarche. As a result, she said The Pill gave her a false sense of control. She had fully bought into a false narrative that periods should be embarrassing and that they serve no useful function. At some level, she believed that completely stopping her menstruation with potent chemicals might actually be better for her than respecting her body’s natural processes. This did not change even after two doctors had her stop hormonal birth control for health concerns.

Western medicine – We tend to give doctors an inordinate authority over our health decisions to the point of almost idolizing them. This is reinforced by a notion that they have taken the Hippocratic Oath, promising to first, do no harm. However, only slightly over half of all physicians today have taken the oath, and that percentage drops with each new graduating class.

The more entrenched a young woman’s faith in Western medicine the less likely she is to question birth control.

Addiction – Some women seem to develop a type of addiction to hormonal birth control. The mere suggestion that they should look for another option is enough to create severe anxiety.

Stockholm syndrome – Closely related, some women may take on a type of Stockholm syndrome that prevents them from connecting the dots. Stockholm syndrome is described as a coping mechanism that some victims of an abusive situation develop in which they actually grow fond of the abuser.

Brandy recalled, “In a lot of ways, if feels like I was in an abusive relationship, but I wasn’t able to see how abusive it was until I stepped away.”

Withdrawal – Beyond the addictive nature, quitting any synthetic steroid cold turkey can be hard on the system. There’s a reason doctors taper you off of prednisone and other steroids.

Many women experience withdrawal symptoms when they try to stop, and this is enough to drive them right back to The Pill.

Little support – Historically, there has been a lack of support for women coming off these potent synthetic hormones – some after decades of use. Even the medical professionals who prescribe the drug are woefully undertrained on dealing with the detoxification process necessary for a healthy transition off of The Pill. Actually, that is an understatement. Most doctors have not even contemplated the effects of coming off the synthetic steroids in birth control. They act is if you just stop and your body returns to normal.

When Brandy came off The Pill, she immediately began to see and feel changes in her body, including her first UTI, at the age of 40. This was the lightbulb moment when she realized how much impact the synthetic steroids had been having on her body. Despite having made it through 40 years with no UTIs, two of her doctors, who are still clearly wearing their birth control blinders, told her it sounded like she had poor hygiene habits. Somehow, in their eyes, I guess it took 40 years for those bad habits to catch up to her.

By the way, Brandy recently developed a course to help women through the transition off of hormonal birth control.

A Unique Formula

Clearly, there are lots of variables that can influence the way a woman perceives and judges birth control.

Every woman is different. Each has her own unique body chemistry. That is why a birth control formulation that seems harmless to one woman can be deadly for the next.

Brandy mused that the way women weigh their thoughts on The Pill is equally idiosyncratic. There is no one phrase or thought that will lead women to suddenly see the realities of hormonal birth control. Each woman has to hear the right message at the right time to help her properly weigh the benefits and risks for her situation. I say “properly” because the system is so stacked against women getting accurate information about this potent drug.

Brandy added this last thought related to one of the first big hurdles that women encounter – the overwhelming tendency to mitigate and downplay side effects. She advised, “The subtle symptoms are the first indicators. Don’t dismiss them because they seem insignificant. They are frequently pointing to something bigger.”

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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.

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Why I Made a Documentary About the Birth Control Pill

by Raquel Latona

Published on December 27, 2022

2214 views

hormoneously alone - birth control documentary

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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Hormonal Birth Control Solves Everything Right? Wrong.

by Jess Poland

Published on December 8, 2022

11521 views

Hi, my name is Jess, I have two children, whom I gave birth to at age 17 and 19. This saved me in ways I could write a book about. I also had one miscarriage. Members of my family have a history of gynecological problems and some of them struggle with fertility. I also was at high risk for hormonal problems due to my strong family history. What I did not know, was just how limited doctors’ understanding of menstrual and hormone problems was. For every problem I presented with, hormonal birth control and painkillers were the answer. When those didn’t work, surgery. I had 10 operations in the span of a few years, until finally and out of desperation, I had a total hysterectomy in my twenties. I cannot help but wonder if the Depo Provera prescribed to me after the birth of my second child was somehow the root of my illnesses and all of the other prescriptions for hormonal birth control added and worsened my pain. It seems like I was in vicious cycle. Here is my story.

Hormonal Birth Control, Pain, and the Long List of ER Visits and Unsuccessful Surgeries

Depo Provera: The Beginning of My Pain

At my 6-week post birth check-up for my 2^nd child, the doctor I recommended that I go on the Depo Provera shot to prevent any further pregnancies. So, I did. In September 2013, after two more shots of the Depo Provera, I started having “a period” that lasted 7 months! After multiple doctors’ visits, lots of medications and tests, I was referred to my first specialist, a gynecologist.

Operation 1. In April 2014, at 20 years old, I had my first gynecological surgery: a hysteroscopy, along with a D&C and a Mirena inserted to stop the “period” I was having. The Mirena was also for birth control.

The Mirena Chronicles: More Pain and Ruptured Cyst

For the next 8 months, I had extremely irregular periods, unusual pain, and contemplated having the Mirena removed. The specialist recommended that I keep it in and see if it settles. Intercourse was painful, and after, I was guaranteed to wake up bleeding the next day. My pain became unbearable and after I had an ultrasound, they found I had a cyst on my left ovary. I was given prescription pain relief and was told they would do another ultrasound in 4-6 weeks. That didn’t happen because the pain was slowly getting worse. After two more visits to the emergency department with more pain medication, I was still told that we needed to take a wait and see approach. My health was declining. I lost 7 kilograms in 3 weeks from feeling so unwell.

Then one day I collapsed with severe sudden pain. I went to the hospital straight away when another ultrasound revealed the cyst on my ovary had ruptured. I was told I needed to undergo surgery.

Operation 2. I had a laparoscopy, so they could clean out the mess from the ruptured cyst.

Irregular Bleeding, Another Cyst, Endometriosis, and Still, Mirena is the Solution

A couple months went by and my pain once again returned. I still was having irregular bleeding and was still guaranteed to be bleeding after having intercourse. It was like déjà vu. Unfortunately, I was back on pain killers and an ultrasound revealed another ovarian cyst. The pain was often unbearable. Off to the emergency department again. Multiple pain medications didn’t seem to be working and I was told I need to deal with it as there was nothing they could really do. I thought “Are you serious?!?! Why the hell won’t you help me?!?!” I was a mess.

At every hospital visit, I got the “Oh you are on a lot of bad medication; you shouldn’t take so much.” So I would ask “can you please do something? I don’t want to keep shoveling pills down my throat!!”. However, every time the answer seemed to be “here are some more medications for your pain because we can see you’re in a lot of pain and your vital signs are showing you are in a lot of pain”. This wasn’t providing any sort of solution to fix my pain and being told to suck it up and get over it, by one doctor, didn’t help either. I couldn’t help but feel depressed and severely anxious every time I needed to go to the emergency department. I was in so much pain I didn’t know what to do. When did I become a person who needed multiply prescription medicines to control the pain enough that I could function semi-normally? At one point, I weighed only 48 kilograms. I had lost 10 kilograms. I could barely eat. Every day I tried to stay positive, but it was so hard being consumed in pain 24 hours, 7 days a week.

Operation 3. I had another laparoscopy on the 1^st of May 2015, where I had the cyst removed from my left ovary. This is when they told me I had some endometriosis. They inserted another Mirena as a treatment option. It seems as though, birth control and pain killers are the only answers that they have.

Rinse and Repeat and Repeat and Repeat: More Hormonal Birth Control and More Surgeries

By September 2015 the same thing happened again, another large cyst, given away by the extreme pain and accompanied by the irregular bleeding! Another round of multiple hospital visits and admissions, I was again put on really strong pain killers and we discussed treatment options. I was prepped for a procedure called an aspiration and drainage, but my bowel and bladder were collapsed over, and they couldn’t perform it.

Operation 4. On the 24^th September 2015, I had another laparoscopy. Another large cyst and more endometriosis were removed. After surgery, I was placed on a different birth control pill, along with the Mirena IUD, as a treatment option for the reoccurring cysts and endometriosis.

By January 2016 my pain had once again come back, and I was admitted to hospital. The result showed that I had another cyst on my left ovary. (Seriously, WTF!!! So many more tears). They told me they didn’t want to do any more operations on me, and I sure as hell didn’t want anymore. I was now 22 and felt like I was failing as a mum and person because I was always so consumed in pain. There were days where I couldn’t even leave the house. I had the Mirena removed again and was once again on pain killers. I was put on a hormonal birth control pill; a much higher dose, and we all prayed this would give me relief.

I had started to build up a resistance to any sort of pain relief. It felt like I was constantly going to the emergency department and was always sent home with more pain killers. Most of the time, the same ones I already took daily. I was going because my pain was so out of control, everyone around me was telling me to go get help, including my GP because I could barely function. Why were they sending me home on the same pain killers that didn’t control my pain? This affected my emotional state further. Some nurses, doctors and people were really kind to me, and others were extremely nasty and made me feel guilty for being in so much pain. I really didn’t want to be sent home again with no solution. “We must figure something out, please stop doing this to me!!! It has happened too many times!”

By March 2016, I was still in chronic pain and on even more daily medications. I had another ultrasound which reveal that I still had another large cyst in my left ovary. It also showed that I had nephrocalcinoisis (calcium build-up) and a small cyst in one of my kidneys, I was told this could be from long term use of pain medication but not exclusively. My jaw dropped. I had to travel to see a kidney specialist who told me it was nothing much to worry about and if it gets worse then I will be referred back. The advice from him was to ease up on the pain medication if possible and find other ways to deal with my chronic pain.

Operation 5. By May 2016, we were once again going to re-insert a Mirena to try and help my issue, however, it didn’t want to go in, so I had my 5^th Operation to have it inserted on the 2^nd June 2016. (Even if it was only slightly effective for a couple months that gave us time to try figure out what we were going to do). I was using a lot pain medication still, and my bleeding was happening more than it wasn’t. Once again, I was anemic and needed to take supplements to help my iron. Luckily, I never needed a blood transfusion. I had honestly lost count of the amount of times I went to my doctor’s clinic and the emergency department. I couldn’t even tell you the names of all the different types of pain relief and contraception options I had tried. I was labelled as someone who just ‘wanted painkillers’ because the amount I was on would not fix my pain. I was anxious and depressed due to my declining health. I wanted to just stop taking everything, but the pain was so much I couldn’t even move. Still around 50 kilograms and I had now been on pain relief constantly for around 6 months.

Operation 6. At this stage I was feeling worse if anything, so I had my 6^th operation to remove the Mirena once again, after failed attempts to remove it in the gynecologist unit.

Going in Circles: More Birth Control, More Pain and Problems and More Surgery

By September 2016, I had visited the hospital and doctors so many times I was known on a first name basis. By this time, I had begun to research treatment options extensively and spoke to multiple people, including my gynecologists and doctor which led to me to discussing a hysterectomy. By now, I was willing to try any option to rid me of this pain! After extensive discussion it was decided that I would just have my left ovary removed because that was the most troublesome. In September 2016, we scheduled a laparoscopic Left Salpingo- Oophorectomy (Left Ovary and Fallopian Tube Removal).

Operation 7. On the 12^th of October (day after my 23^rd birthday), I had my 7^th Operation. During this operation they found another problem. This is when I was diagnosed with pelvic congestion syndrome/ Ovarian Vein reflux and was referred to another specialist- an Interventional Radiologist.

Pelvic Congestion Syndrome/Ovarian pain reflux
“Pelvic venous congestion syndrome is also known as ovarian vein reflux. It is a cause of chronic pelvic pain in approximately 13-40% of women. Chronic pelvic pain is pain in the lower abdomen which has been present for more than 6 months. Pelvic congestion syndrome is therefore a painful condition often caused by dilatation of the ovarian and/or pelvic veins (rather like varicose veins but in the pelvis) . Varicose veins are commonly seen in the legs when the veins become less elastic and the valves that stop the blood from flowing backwards stop working. This causes the blood to pool, due to gravity, causing enlarged, bulging and knotty veins. This is also what happens to the pelvic veins in pelvic venous congestion syndrome (PVCS). This pressure results in the pain of PVCS and may also cause visible varicose veins around the vulva, vagina, inner thigh, and sometimes, the buttock and down the leg (s).”

Things went well for a short while, but the pain just got worse again. Again, I was on a lot of pain killers. I was always forced to take Panadol first if I was admitted in the ED, before they prescribed anything else.

I was referred to another specialist – an Interventional radiologist.

I drove 5 hours to see an interventional radiologist as there were none locally who could take me in the public system. I was advised by him that I should have platinum coils inserted in my ovarian veins and a foam solution to kill off a bunch of other veins. They thought the PVCS could be the cause to my pain and this treatment could prevent me from getting anymore varicose veins. He told me I am lucky that my legs and vagina hadn’t been affected yet, and that I will need to keep an eye out for this in the future.

Operation 8. I had operation number 8 in March 2017. I wasn’t under general anesthetic this time. Just a “twilight sedation” where they used my main artery in my neck to insert the coils and other treatments. Thankfully, I was out of it for most of it!! I had multiple coils inserted and who knows how many other smaller veins were treated. They wanted me to stay admitted overnight but I couldn’t do it. I was actually a bit traumatized from the whole experience. I felt extremely alone and scared down in a “big city” hospital by myself. At one stage, they were so busy that the head of my bed was in a utility closet to get me out of the way. Unfortunately, this operation did not help my pain as much as I prayed it would. pelvic congestion hormonal birth control

Chemical Menopause, Hysterectomy, and More Medications

I was at my wits end. I was breaking down emotionally, so I reconsidered a hysterectomy even though I was only 23 years old. The gynecologist I was seeing suggested that I go into chemical menopause before I had a hysterectomy so that I could see if it would benefit my pain. So, I did, I went on an injection called Zoladex. It causes chemical menopause and it’s actually used as a treatment for breast and prostate cancer. I was told not to research it but I couldn’t help myself.

I went to a regular GP appointment, but this time came out with more bad news. The results were that I have high cholesterol, which showed in a recent blood test. The doctor was a little confused because I didn’t have any of the major risk factors for high cholesterol. Turns out, that is what chemical (surgical or natural) menopause can do to one’s body. Now I had to add another specialist to the list of doctors and it meant another trip away. He told me if you have a hysterectomy and you take out your only remaining ovary, your cholesterol treatment will greatly differ”. He told me, “what would/could happen and that I must go back after my operation, but for now it was still untreated. So, with that news I felt like I needed to keep my only remaining ovary.

I was now seeing multiple professionals and had been seeing a gynecologist who made me regain hope. We talked about this operation multiple times over a long period of time and I was still suffering “chemical menopause” symptoms at that time, with my pain coming back worse the chemical menopause pellet started to run out. I was excited when the day finally came where I signed the papers to have a total hysterectomy. The advice I received was that I should make serious lifestyle changes to help my body. I was advised to do weight bearing exercises, quit smoking, go on Hormone Replacement Therapy and pray it doesn’t bring my pain back.

One thing that is still stuck in my mind is the line “this could take up to 10 years of your life”. I was in so much pain and I was sick of taking so much medicine that was making me sick in other ways. I really wanted to stop having operation after operation.

Operation 9. On the 2nd of August 2017, I had a total hysterectomy. I had everything except my right ovary removed. I must admit I felt strange, my belly felt empty, but I immediately felt like I had less pain.

It was the best thing I did for my pain. I felt like I had recovered from this operation fast and everyone (including myself) was amazed at how well I was doing physically afterwards. Ten days post op, I was able to stop all the pain medication I had been on! This was massive for me!!! No more pain killers! Or so I thought. My right ovary didn’t “wake up” after my hysterectomy and I began experiencing stronger menopause symptoms. I knew the obvious symptoms after having chemical menopause. This led me to the journey of figuring out and starting my first lot of Hormone Replacement Therapy (HRT). I also came to the realization that it takes up to one year to fully heal from a total hysterectomy.

I must admit this affected me mentally and emotionally more than I thought it would. Some days are so bad, they scare me, other days I’m on top of the world. I think this definitely contributed to my mental health. One of the hardest things about having mental illness is getting up and putting on ‘you’re okay face’ every day. This isn’t makeup. This is the face where you put on a smile and say, “I’m fine”, or “I’m good thanks”. Its where you hope no one sees past your bulls**t smile because the moment they do you know you’ll break down and cry, but at the same time you just want someone to help you and help you not feel the way you feel anymore. Who knew hormones can mess with your head so much? Who knew hormones play apart in so many different things in your body?

Operation 10. On the 28^th of June 2018, surgery number 10 happened. I had my right ovary removed. I had another cyst that was complex in nature and which was making my pain worst, contributing to me being back on pain killers again full-time. They also saw that the coil that was cut during my hysterectomy was exposed at the tip, so they trimmed this up as well. hysterectomy at 23

Surgical Menopause: Medicine’s Only Other Solution

After this operation, I “officially” entered surgical menopause. I have learnt what surgical menopause really is, and how much it differs from natural menopause. I also learned how under-educated people are regarding this condition, including some doctors and specialist. I didn’t know this was the journey I was going to be on for the rest of my life, however, I have learned that I am my only and best advocate. I still suffer from chronic pain every day, and now I have an added stress of menopause. All I can do is stay strong and true to what I know and keep fighting for myself and women like me. I will continue to try and get better health care for myself and I will not give up until I am satisfied, I have achieved this. This is not how my story ends.

Thank you for taking the time to read my story. Kind Regards, Jessica Poland (Firth). Queensland, Australia.

Share Your Story

If you have had similar experiences with hormonal birth control and/or medications and surgery, write and share your story on Hormones Matter.

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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.

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This article was published originally on November 29, 2021.

Why Aren’t Women Tested for Factor V Leiden and Other Clotting Disorders?

by Kerry Gretchen

Published on August 9, 2022

14749 views

When I had a stroke at age 28, my doctors did some tests and found that I have a fairly common clotting disorder called Factor V Leiden. They told me that this, combined with birth control pills, are what caused me to have the cerebral venous thrombosis (stroke). It didn’t occur to me then to ask what Factor V Leiden actually was. Or to ask why I hadn’t been testing for inherited clotting disorders before I was put on medication that increased my risk for blood clots. These things didn’t occur to me until much later, after I learned to walk again.

I spent most of the first two years after my stroke getting on with my life. It wasn’t until I was searching for a topic for my thesis that I revisited what happened to me. I had no idea that birth control pills could be so dangerous and I certainly didn’t know that I could have an inherited genetic condition which would make them exponentially more dangerous for me. “How many women have the same condition?” I wondered. “Why don’t we test them before they are put on hormones?” These are some of the questions I sought to answer with my research.

What is Factor V Leiden?

Factor V Leiden (FVL) is a 20,000-year-old mutation common in the general population and a major genetic risk factor for thrombosis. It’s the most common genetic clotting disorder, accounting for around half of all cases. It’s most commonly found in Caucasians (3-8%).

Patients with Factor V Leiden can be either:

Heterozygous: inherited one mutated gene from a parent

or

Homozygous: inherited two mutated genes, one from each parent

What Does It Do?

As my hematologist described, FVL doesn’t cause blood clots but once activated, it dangerously accelerates clotting. Researchers aren’t clear on why some people with FVL activate and others don’t but there is almost always a precipitating factor—surgery, trauma, immobility, use of hormones, etc.

According to a review in Blood, the journal for the American Society of Hematology, women with heterozygous FVL who also use oral contraceptives have an estimated 30 to 50-fold increased risk of blood clots, while women with homozygous FVL have a several hundred-fold increased risk.

It is the most common genetic cause of primary and recurrent venous thromboembolism in women.

We know that taking estrogen can increase the risk of blood clots, stroke, and heart attack in women. And estrogen, when taken by someone with FVL, can significantly increase the risk of blood clots. Whether women are taking synthetic estrogen in the form of oral contraceptives, or hormone replacement therapy or have increased concentrations of the endogenous estrogens due to pregnancy, they are at much greater risk of clotting.

FVL accounts for 20-50% of the venous thromboembolisms (VTE) that are pregnancy related. In the United States, VTE is the leading cause of maternal death. In addition to causing VTE in pregnant women, FVL has been linked to miscarriage and preeclampsia.

Perhaps the women most at risk for blood clots are those that have been placed on hormone replacement therapy (HRT). A recent review of data from several studies found that women taking hormone replacement therapy were at an increased risk of blood clot and stroke. Worse yet, women with FVL who are also on HRT were 14-16 times more likely to have a VTE.

Despite these risks, women are not systematically tested for FVL before they are prescribed oral contraceptives, before or during pregnancy, or before commencing HRT.

What Women Know about Birth Control and Blood Clots

Part of my thesis research included a survey to assess what women understand about the risks of birth control pills and clotting disorders. Over 300 women who had taken birth control pills participated. What I found was that most women do not understand the side effects of hormonal birth control, nor are they familiar with the symptoms of a blood clot.

As for clotting disorders, nearly 60% of the women surveyed had no knowledge of these conditions. When asked whether they knew about clotting disorders BEFORE they took birth control pills that number increases considerably.

Over 80% of women were taking a medication without the knowledge that they could have an undiagnosed genetic condition that would make that medication exponentially more dangerous.

This shouldn’t come as much of a surprise give that this information is not found in advertisements for birth control pills, on non- profit websites about birth control pills and their risks, or on literature provided with the prescriptions.

Why Aren’t Women Tested for Clotting Disorders?

The most common reason I found in my research for not testing women were cost-benefit analyses measured in cost per prevention of one death.

Setting aside the moral argument that you cannot put a price on a human life, because clearly the government and corporations do just that. (It’s $8 million in case you were wondering.) The cost of taking care of taking care of victims of blood clots is not insignificant.

Each year thousands of women using hormonal contraceptives will develop blood clots. The average cost of a patient with pulmonary embolism (PE) is nearly $9,000 (for a three-day stay not including follow-up medication and subsequent testing).

A hospital stay as a stroke patient is over twice that at nearly $22,000 (not including continuing out-patient rehabilitation, medications, testing, etc.). As a stroke survivor, I can tell you that the bills don’t stop after you leave the hospital. I was incredibly lucky that I only needed a month of out-patient therapy. Most patients need considerably more and will require life-long medication and testing. It’s important to note that due to the increasing cost of healthcare, the figures in these studies (PEs from 2003-2010; strokes from 2006-2008) would be exponentially higher now.

I’m not a statistician but I can do some basic math and while I wasn’t able to find data for the United States (surprise, surprise), the health ministry in France recently conducted a study that showed that the birth control pill causes 2,500 blood clots a year and 20 deaths. The United States has 9.72 million women using the pill compared to France’s 4.27 million. This doesn’t include the patch, ring, injectable, or hormonal IUD, but for the sake of keeping things simple, let’s just use the pill. So we have over twice the pill-users as France, which means twice the blood clots (5,000) and twice the deaths (40). If we assume that half of the blood clots are PE and half are stroke, we come up with a whopping $77.5 million in hospital bills for these blood clots (not counting life-long treatment). Now adding the cost-of-life determined by the government (40 women times $8 million= $320 million) and we end up with nearly $400 million a year in damages caused by the pill. For the cost of only one year of damages, all 10 million women could have a one-time $40 blood test which would result in considerably fewer blood clots.

Furthermore, the research in my thesis shows that women would be willing to not only take these tests, but also to pay for them!

Of the 311 who answered the question, 82.3% (or 256) said they would be willing to take the test. Only 7.2% said no, with the other 10.6% “not sure.” More than 60% of respondents would be willing to pay for the test (up to $50).

In addition, the cost of a blood test is directly proportional to how frequently it is performed. An increase in testing will result in a decrease in the cost of testing.

Women Deserve Better

Putting aside the monetary costs for a moment, what about the emotional and physical toll for women who suffer these dangerous and debilitating blood clots? There is no excuse for women to suffer strokes, pulmonary embolisms, DVTs, multiple miscarriages, and still births because they have an undiagnosed clotting disorder.

That said, requiring a test before prescribing hormones to women would raise awareness of the dangers of these drugs and may reduce the overall number of women using them. Which leads one to wonder if the absence of testing for women is really just a public relations strategy.

Perhaps one of the most devastating cautionary tales of not testing for clotting disorders comes from Laura Femia Buccellato. Her daughter Theresa was 16 years old when she was killed from a blood clot caused by (undiagnosed) Factor V Leiden and birth control pills. Would Theresa be with us today if she had had a simple blood test? Would I have had a stroke? When we will demand better?

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.

Image by fernando zhiminaicela from Pixabay.

This article was first published in September 2016.

Banging My Head Against the Wall: Questioning Birth Control Safety

by Mike Gaskins

Published on April 25, 2022

4530 views

My position as a women’s health advocate is frequently challenged merely because I am a man. I’m okay with that because it’s a valid point. I will never experience firsthand many of the issues that concern me. However, I don’t believe that means I should be forced to remain silent on matters related to women’s health. My passion for the cause is nurtured by a dear love for my wife and daughters, as well as for my sisters and nieces, not to mention fond memories of a loving mother who lost her life to estrogen-sensitive breast cancer. It is with them in mind that I would like to issue a challenge of my own:

If you truly care about the health of women, take a moment to consider where you stand on birth control and think critically about why you stand there.

Visions of Utopia

I celebrated the recent news that a jury awarded Dewayne Johnson $289 million in his lawsuit against Monsanto. The former school groundskeeper sued the makers of Roundup for not being forthcoming with customers about the dangers of their product. He believed the glyphosate in Roundup caused his non-Hodgkin’s lymphoma, and the jury agreed.

I was ecstatic to see the subsequent momentum—the number of lawsuits against Monsanto jumped to about 8,000, and Vietnam actually demanded Monsanto pay victims of Agent Orange, another Monsanto product and a chemical cousin of glyphosate.

People were finally paying attention to the horrible consequences of using this toxic chemical. For a moment, I thought this might translate to hormonal contraceptives. (I’m not sure how I made that leap, but Utopian visions aren’t generally known for being bound by rational thought.) At any rate, I was sure people would start turning on birth control just as they were with Roundup.

Suing for Side Effects

Then, reality set in. Those 8,000 lawsuits will probably settle and soon be forgotten. Before we know it, people will freely be spraying Roundup again, and Monsanto will be off the hook because they will do so knowing the risks.

The connection between Roundup and hormonal contraceptives is actually much stronger than it may first seem. Monsanto’s parent company, Bayer, also manufactures other toxic chemicals, which represent the most popular birth control brands in the world – and these brands have legal issues of their own. Yaz/Yasmin paid out $2.04 billion to settle over 10,000 blood-clot lawsuits as of January 2016. They paid another $57 million to heart attack and stroke victims, and $21.5 million for gallbladder damage. Those numbers have likely increased, as several thousand cases remain unsettled and more suits are being filed each day.

It Begins with One

The Roundup avalanche began with one person. At least for a day or two, everyone knew who Dewayne Johnson was. His case focused a lot of attention on the risks of Roundup and the manufacturer’s willingness to overlook those dangers for the sake of profits.

There are innumerable heartbreaking stories of young women who have been maimed or killed by their birth control. Any one of these could have been ‘the One’ that launched an avalanche against hormonal birth control. These stories fill the internet. Let’s pick one.

In 2011, the Canadian Broadcast Company (CBC) ran a story about a mother who was suing Bayer Healthcare for the death of her daughter. A healthy 18-year old, Miranda Scott went to the gym after 5-weeks on Yasmin. She collapsed while on the elliptical machine unable to breathe. An autopsy revealed she died from pulmonary emboli, blood clots in the lungs. It was only after her death that her mother began researching Yasmin, and discovered it was the likely cause of her blood clots and very early death.

At this point, Bayer had already paid out over $1 billion in blood clot related settlements. But, here’s how they responded to the lawsuit in a statement to the CBC:

“We are very disappointed in Justice Crane’s decision to certify a class in Ontario in an ongoing lawsuit regarding Yaz and Yasmin. No decision has been made on the merits of the case. We have filed a request with the Court for leave to appeal the decision and are evaluating our legal options… At Bayer patient safety comes first and we fully stand behind, Yaz and Yasmin.”

Seven years have passed since Miranda Scott’s death, and Bayer has paid out another billion-plus dollars in settlements. I understand why Bayer still stands behind their product – it’s a moneymaker, which honestly probably ranks a little higher than patient safety in their eyes. What I can’t understand is why women’s health advocates still stand behind hormonal birth control.

The Birth Control Ideology

The narrative has been defined in such a way that ‘birth control’ equals ‘The Pill’ equals ‘Women’s Rights.’ This is incredibly fortunate for the pharmaceutical companies because any ‘attack’ on their product can be spun as an attack on Women’s Rights.

So, here’s where I challenge you to rethink your stance on birth control as it relates to hormonal contraceptives in three quick steps:

1) Research the Risks of Birth Control

Go to your favorite search engine and type, “Oral Contraceptives + [pick a disease/side effect/complication]” and scroll through the results. You don’t even have to invest a lot of time; just read the headlines and synopses to get a feel for what’s out there. Do this with 3 or 4 different complications that seem really diverse.

One of the enduring statements from the Nelson Pill Hearings was that these potent little pills leave no tissue unaffected. For me, this exercise drove home that point. It’s pretty incredible to contemplate the breadth of the myriad complications. Just consider some of the ones I’ve written about on this website – depression, hair loss, lupus, multiple sclerosis, migraines, infertility, and irritable bowel disease.

2) Why Just The Pill?

These days, hormonal contraceptives can be delivered via rings, patches, injectables, or IUDs. The vehicle doesn’t really matter. They’ve all been shown to have their own inherent risks. So, why are they usually considered the only choice when it comes to family planning?

When The Pill first came out, Dr. David Clark, a world-renowned neurologist mused that it had been granted a sort of “diplomatic immunity” because of irrational fears of overpopulation. Today, that diplomatic immunity has been galvanized by its equally irrational alignment with Women’s Rights.

Why irrational? Consider this. Holly Grigg-Spall wrote Sweetening The Pill, a wonderful book on the dangers of The Pill, its addictive qualities, and the corporate motivations behind its promotion. Hollywood producers approached her about developing a documentary on the same topic. She wrote about the disheartening experience for Hormones Matter. After investing a lot of herself into the project, she received an email from one of the other women working on the project expressing her thought that

“…there was always a small concern in the back of my mind about unintentionally aiding the right-wing agenda.”

I felt Holly’s pain as I read the article. I know what it’s like to pour yourself into a project, only to have it grind to a halt. But on a deeper level, I felt her frustration with the ‘system’ (for lack of a better word.) Whenever I hear something like this, I think of a quote often attributed to Golda Mier, “We will only have peace with the Arabs when they love their children more than they hate us.”

To paraphrase, we will only be able to prioritize women’s health (and rights) when we care more about exposing the risks of birth control than we worry about giving ammunition to our political rivals.

3) Are There Birth Control Options?

In her enlightening book, Reproductive Rights and Wrongs, Betsy Hartmann breaks down the fallacy of overpopulation in the Third World and demonstrates how population control policies influenced the current look of birth control here in the US. She writes:

“Married to population control, family planning has been divorced from the concern for women’s health and well-being that inspired the first feminist crusaders for birth control…A family planning program designed to improve health and to expand women’s control over reproduction looks very different indeed from one whose main concern is to reduce birth rates as fast as possible.”

She suggests that if a contraceptive policy was truly concerned with women’s health, it would do more to promote barrier methods that also protect against sexually transmitted diseases, or natural methods that allow for child spacing without introducing internal pollutants to the woman’s body.

In fact, natural forms of fertility awareness have enjoyed growing popularity among young women in recent years. This shouldn’t be confused with the highly ineffective rhythm method. Nor is it exclusive to religious-based ‘natural family planning.’ While the Creighton Model and Billings Method have begun to appeal to women outside the Roman Catholic faith, there are also successful secular versions of fertility awareness available from sources like the Red Tent Sisters.

Planned Parenthood claims that fertility awareness methods are only about 80% effective. However, a report published in the Osteopathic Journal of Medicine in 2013 found the overall effectiveness of fertility awareness methods when used correctly to be greater than 95% (Creighton 99.5%; Billings 97%). Another study of poor urban women in Delhi found the Billings Method to be 99.86% effective. These numbers are comparable to The Pill, but without all the risks.

Take Aways

For a deeper dig into this topic, I highly recommend the two eye-opening books previously referenced: Reproductive Rights and Wrongs and Sweetening The Pill.

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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.

Image credit: PxHere; CCO public domain

This article was published originally on September 27, 2018.

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What is Factor V Leiden?

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