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FDA Citizen’s Petition on Birth Control: Shocking Stories of How Women Are Getting Hurt

posted on September 20, 2019 by Madeleine Coyne Madeleine Coyne

Earlier this summer, a Citizen’s Petition was filed to the FDA requesting greater transparency concerning the many evidence-based health risks and side effects of different forms of hormonal contraceptives. We at Natural Womanhood published a breakdown of the FDA petition into a more digestible format in order to explain the forms of contraception discussed in the petition, the research behind it, and the overall goals and potential changes if this petition is successfully received.

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Ultimately, the goal of the Citizen’s Petition is to compel the Food and Drug Administration to better inform all prescribers and consumers of hormonal birth control of its possible (and even likely) evidence-based health risks, whether in the form of a pill, patch, implant, shot, IUD, or vaginal ring.

If the petition is accepted, the FDA would make necessary changes on labeling of hormonal contraceptive prescriptions that adequately convey the possible risks and adverse effects on women’s health for consumers. Many medical professionals rely on the FDA’s labels to disclose all of the known health risks to their patients; thus, the labeling standards must be improved and updated to meet the needs of both the prescribers and consumers.

In addition, this petition would remove one of the worst culprits from the market: Depo Provera (DMPA), an injectable contraceptive that is still (shockingly) on the market, despite its severe, proven health risks. Many of the people who have commented on the Citizen’s Petition have specifically shared their stories with Depo Provera.

So far, more than 130 people—both men and women—have taken time to add their personal stories and concerns in the comments of the Citizen’s Petition. These powerful testimonies are written by women who have firsthand experience with birth control side effects ranging from uncomfortable to completely debilitating and life-threatening. They are written by ER nurses and family practice doctors who have seen women with hemorrhaging, blood clots, and migraines caused by patients’ contraceptives. And, most tragically, they are written by both mothers and fathers who have lost their young daughters to extreme health complications caused by their contraceptives. Some people shared their names with their comment, while others opted to remain anonymous.

Because of the sheer quantity and gravity of the stories shared in the comments of the petition, I encourage you to take some time to read through FDA comments yourself, as well as to continue to share the petition and share your own comments. To give you an idea of the urgent nature of this petition, here is just a sample of the stories that have been shared so far, divided by various types of adverse side effects.

Depression, low libido, weight gain, and migraines

While at first glance, depression, low libido, weight gain, and migraines may not seem like major side effects, they all can severely alter one’s daily life. In the case of depression, these side effects can be life-threatening. We know too well women who have had awful experiences with depression and mental illness, as well as other emotional, mental, and physical side effects of birth control. A frequent refrain we hear is how these are risks that young girls and women say they are rarely (if ever) warned about from their doctors prescribing their contraceptives.

Consider these women’s stories.

Anonymous: “When I was taking Hormonal BirthControl (HBC) I underwent a massive weigh gain. From 120 lbs to 155 lbs. Thats almost adding 30% to my body weight! I also suffered with severe stomach cramping, constant discomfort, constipation and diarrhea.”

Ceci: “After two weeks of going on the pill, I had gained 20 lbs of ‘water weight’. I also had terrible headaches and awful mood swings almost immediately after going on the pill. Additionally, going into the second month I bled for 2 weeks straight. Thankfully, I promptly decided I would never take chemical or hormonal contraception again!”

Anonymous: “I was prescribed oral contraceptives as a means to ‘control my endometriosis’ and all the side effects and pain associated with it. Anytime I had a side effect (migraines, cycle irregularity, etc.), my doctor would change the pill I was on to a different one. I was on at least 10-15 different ones! I lost count after awhile. The Nuva Ring was one of the last hormonal contraceptives I was on. I experienced panic attacks and horrific migraines on the Nuva Ring. One migraine occurred while I was driving on the interstate. I had to pull over and call my husband to drive an hour to come get me. Surgical exploration showed that the contraceptives I had been on did NOT prevent my endometriosis from growing. And, the years of damage caused by the contraceptives led to my infertility.”

Rachael: “I suffered horrible side effects as a result of birth control pills for years. I first started taking the pill at age 18, and immediately lost my libido, experienced sexual malfunction, severe migraines and depression. When I discussed these symptoms with my doctors, I was told that I wasn’t drinking enough water, I was simply underweight or that there was something wrong with me- not the medication … In fact, every Gynecologist Ive ever seen pushes the pill or another form of hormonal birth control with me even after I discuss with them all of my concerns regarding the bad side effects Ive had in the past. I find this strange, because whenever I discuss side effects with doctors about other medications, they do their best to avoid it if at all possible, or switch to ones that work differently. Hormonal birth control is the only medication Ive ever been not just prescribed, but actively encouraged to take despite having an adverse reaction to every single brand Ive ever taken.”

Gretchen: “I was a perfectly healthy 32-year-old school teacher and the picture of health prior to getting one shot of Depo provera in August 2010. That shot messed my body up to the core. I am still struggling with depression, chronic fatigue, adrenal fatigue, hashimotos autoimmune thyroiditis, vitamin deficiencies, back pain, joint pain, chronic infections, extreme weight gain, hormonal imbalance, as well as about 20 other symptoms that I did not have prior to getting that toxic shot. Depo Provera flipped my healthy happy body and mind upside down. Im 41 years old and disabled now and can barely get out of bed most days. I was never warned of any side effects from my doctor except for 5-10 lb weight gain. Had I known I could be permanently disabled for almost 9 years from one shot I would have NEVER gotten it. Doctors and scientists need to be aware injecting this high dose of synthetic progestin is EXTREMELY DANGEROUS for some women and I’m one of them. Please take this drug off the market before it disables more women. It should be illegal to ruin a woman’s life like it has mine.”

Sadie: “The Paragard copper iud caused me (in 2016/17) to have copper toxicity, mental, emotional, and physical side effects that where not listed on the packaging and were extreme. It is presented as ‘natural’ and ‘hormone free’. I ended up in a copper induced psychosis from the device and lost everything. I was only warned of ‘cramps’ and ‘heavy bleeding’ as possible side effects. I had never even been in therapy before the iud and was ready to go to a mental hospital with it in until I figured it out. All of my below mentioned side effects are resolved after removal and a copper chelation protocol. Side effects I had with the copper iud: debilitating paranoia, anxiety, mind racing, Vision-y thoughts in the front of my head, tremors, obsessive dark thoughts and thoughts of suicide, exhaustion, personality shifts, heart palpitations, irrational behaviors, crying (severe depression), mania.”

Jessica: “My experience with hormonal – estrogen based birth control was partial loss of vision (started while i was driving!) and severe migraines that kept me in bed for a long period of time. I went to the hospital and upon meeting with my obgyn, she is the only one who took me off my birth control. The negative side effects then subsided upon discontinuing the birth control.”

Suzanne: “In February 2017, At age 38, I decided to get the Depo Provera injection. By decided I mean I trusted the doctors recommendation and disclosure of all the information I needed to make the best decision for myself and my body. I asked the doctor what side effects I may experience and she told me I might spot a little. Within days, my body went through massive changes. I soon developed close to 30 side effects and was unrecognizable to anyone who knew me and to myself. I went back to the doctor who gave me the shot and rattled off some symptoms including a 20 pound weight gain within a 2 month period. Her reply was that she’s never heard of such a thing. For months thereafter, I endured the deepest depression I’ve ever experienced in addition to many other physically debilitating symptoms I had no control over. Months passed as I became sicker and sicker by the day. I started seeing a bunch of different doctors looking for some sort of answer, but instead I was told I was experiencing all these symptoms because I was either old or crazy. I lost all hope, was officially defeated, and lost all sense of who I was. Nearly 2 years later, I found a doctor who diagnosed me with a rare thyroid condition as well as copper toxicity, and very high Candida levels. Im now on thyroid medication for the rest of my life and will have to pay out of pocket to get the care I need to feel like a fraction of the person I used to be. Forever.”

Jeanette: “I took the birth control pill for a brief time in my mid-30s. I experienced hair loss, weight gain, depression, lower sex drive, and trouble in my marriage. It quite defeated the purpose of freer sex, as I didn’t feel attractive and wasn’t really in the mood for sex.”

Holly: “In my mid-30s, I went on Ortho Tri-Cyclen Lo for only 9 days. On day 9 I was curled up in a ball on my floor thinking I didn’t deserve to live. I did not take another pill and woke up the next day emotionally back to normal. But in those 9 days the pill destroyed my endocrine system. I suffered terrible physical symptoms that I never had before that day: shortness of breath, tinnitis, “hot foot”, heart palpitations, loss of libido, loss of vision, burning pain, joint pain, deadened emotions…”

Ursula: “I had severe depression with suicidal thoughts. I had no libido and I got severe fatigue. I took on weight and was not able to lose it. And I got a Candida infection of the intestine. After stopping with the birth control pill these symptoms vanished. But the Candida infection of the intestine remained.”

Briana: “I have been on 4 different combined oral contraceptives that all caused highly negative side effects to my health, physically and mentally. These debilitating side effects that led to me choosing not to be on hormonal contraceptives included: depression, anxiety, chest pain, fatigue, lethargy, brain fogginess, low libido, very painful intercourse, back pain, tilted pelvis, blurry eyesight, and baggy eyes.”

Anonymous: “I used birth control for the first years of my marriage and sex was something to tolerate. I couldn’t believe the difference when I went off. I also suffered from many yeast infections and it took several months before I was able to get pregnant.”

Cancer, autoimmune disease, and other illnesses

It was quite shocking to read through the many testimonies of women who have (or had) horrendous illnesses, diseases, and even cancer caused by their various forms of contraception. Here are some of their stories.

Alicia: “I had issues arise with my cervix and had to have it scraped several times for pre cancerous cells. Then a small non-cancerous cyst on my breast. It wasn’t until I met with a breast specialist that she pin pointed most of these issues to having been on the pill for so long, given I have no family history of any the issues I was having.”

Anna: “I was on the pill from the age of 19 to 31 with a one year break in between. At age 31, I found a small breast lump. I went to more than one doctor but the last one I saw was the head of the UCSD Cancer Institute, a Dr Barone, in San Diego, where I lived at the time. He told me that it was small, movable and I didn’t have any pain but that I should GET OFF THE PILL. 19 years later that very same lump grew and became malignant and I ended up having a mastectomy. I cannot prove it is related to my use of the pill – except for the words of that doctor.”

Anonymous: “Last year I was diagnosed with breast cancer and it was hormone receptor positive. I have no doubt that it is due to the use of the pill. Please increase education and warnings for women. Contraception is not health care if it is hurting women unnecessarily due to lack of information prior to using it.”

Rachael: “The worst side effect I had from hormonal BC was once I started taking it, my blood pressure skyrocketed. I went from readings around 125/70 to 145/90 or even higher. This happened very quickly over a 6 month time frame so I know it was connected to the pill … Once I was off the pill all of the aforementioned symptoms vanished, and my BP went way back down to readings in the 120s over low 70s … I am still labeled in my charts as “hypertensive” even though the temporary hypertension I experienced was caused by BC pills and vanished when I stopped taking them. This false diagnosis has caused me to have to undergo more testing for surgery and other things and labeled a cardiovascular risk even though I was only hypertensive when I was on the pill.”

Cheryle: “I began suffering swollen joints and finally diagnosed with rheumatoid arthritis … I have read of huge increases in immune disorders among women and am convinced my use of artificial hormonal contraceptives compromised my bodily systems and led to my immune disorder of RA.”

Blood clots, and sudden death

Not talked about enough, blood clots caused by birth control are severe, sudden, often fatal, and not as rare as one might think. Although we have shared personal stories of beautiful lives cut tragically short by blood clots caused by contraception before, I was nonetheless completely floored by the horrible, tragic stories shared by quite a number of parents who lost their daughters because of hormonal birth control. There are also a number of stories that did not end in death, but are still incredibly frightening and eye-opening.

Kimberly: “Last year, at the age of 46, I was hospitalized with a cerebral thrombosis that was literally caught right before causing a stroke. The ER docs told me that if it had not been for the fact that the people I was with at the time of the event were trained to recognize the signs of stroke and called 911 for a stroke paramedic unit that arrived quickly, I would have been somewhere between a vegetative state and severely disabled. After countless CT scans and MRIs, along with a thorough study of my family history, the neurologist and hematologist teams determined it was the Oral Contraceptives that I was taking that had caused the thrombosis.”

Laura: “2 years ago, my daughter died from a blood clot in her brain caused by the birth control, Yasmin. It was prescribed to her for acne and she believed it was safe. She had no risk factors, no clotting disorders. In the hospital, the doctors told us they see 3-5 patients EVERY WEEK with blood clots from birth control. That’s one hospital in a small metropolitan area in Wisconsin. I can’t imagine what other hospitals are experiencing. Unfortunately, in the last 2 years, I have met several other mothers who lost their daughters to birth control and many others who almost did. Yasmin is still on the market. WHY?!? So many of these contraceptives need to be removed from the market and further studies need to be done. There needs to be SAFE options for women.”

David: “We lost our 23 year old daughter Alexandra to MPE caused by Lutera. She was on it for six months and dropped dead with no warning.”

Joseph: “Our daughter died at age 29 in the Intensive Care Unit of her local hospital where she had been transferred after presenting herself at her local walk-in clinic. Her death was five weeks to the day after getting married and one day before scheduled departure on a delayed honeymoon cruise. The autopsy report stated that she had “bilateral pulmonary thromboemboli” with a thrombus present in the left popliteal fossa. She had been using Nuvaring at the time of her death, this had been removed at the walk-in clinic prior to transport to the hospital. In discussion following her death with the ICU doctor who had directed her treatment, the doctor stated that she believes that hormonal birth control was a significant contributor to the death of our daughter.”

Dru: “My daughter died at the age of 29 due to massive bilateral pulmonary embolisms while using NuvaRing as her birth control. I don’t think women are aware of the many problems that can and do happen with hormonal birth control. Physicians continually reassure women that these products are ‘safe’ when in fact they can cause changes in a woman’s body and can and do lead to health issues, including life threatening blood clots.”

Amanda: “I almost died 5 days before my 27th birthday…” Read Amanda’s entire harrowing story here.

Shawn: “My neighbor suffered from a life threatening blood clot. She was a young mother, healthy, thin and a nonsmoker. Her physician immediately took her off of oral contraceptives, informing her that this was the cause and she could never take them again. She was angry that she had never been adequately informed of this possibility.”

Anonymous: “What I didn’t know or have any clue of, was that my decision months earlier to begin taking birth control was the reason I needed to go to the hospital that day. My birth control that I received under the table, was threatening my life, and I thought it was protecting me. The doctors found hundreds of blood clots filling my lungs and chest tubes, and my heart was enlarged because of the built up pressure caused by the blood-clots …” Read this woman’s full, horrendous story here.

Stacey: “I had a deep vein clot in my left forearm directly linked to my use of the vaginal ring; the clot developed after a surgery and an extended IV in my left arm. My only knowledge of blood clots and birth control was that smoking increased the risk of blood clots while on birth control; I am not a smoker. I also experienced severe mood swings and depression, and weight gain, on depo-provera, these symptoms being down-played by my doctor as normal during the use of birth control.”

Gina: I’m happy to share my daughter’s story. 2 years ago at age 15 she was started on OCPs for very irregular, heavy periods. At month 4 the pharmacy switched her generic brand for some reason. Within a month of the switch, she developed an extensive left leg DVT and a right pulmonary embolism. It turns out our family had factor V leiden and didn’t know it. She’s had 7 surgeries and now has 3 stents in her left iliac vein due to a failure of the first stent (which somehow crushed in on itself and needed two additional stents placed to open it back up). She’s on lifetime anticoagulants now, as she re-clotted 3 times even on therapy that first year. This month marks one year she is clot free. I had never known anyone who suffered this from birth control pills before my daughter. Oddly enough her friend, also recently started on birth control, had a stroke and died 3 months after my daughters experience at age 16. The risk is real, and seems to be getting worse. Do not allow pharmacies to switch brands. It can be a trigger according to the hematologist. KNOW YOUR RISKS.”

Carol: “On July 2nd, 2015 I received a phone call no parent ever wants to receive. My 19 year old daughter Shelby Pepin had died. Shelby was very athletic, did not smoke and had no history of a blood disorder. The coroner’s report confirmed that Shelby had died from a pulmonary embolism. She had a DVT behind her left knee that traveled to her lungs causing her bilateral embolism. The coroner also confirmed that her DVT was caused by her birth control the NuvaRing. Shelby had been on the NuvaRing for 18 months … Shelby’s death has devastated our family. I was unable to work for a few years and I still struggle everyday. I can’t believe that such a healthy, outgoing, adventurous, beautiful girl has died because of birth control … I believe that if Shelby had been told the truth that her birth control the NuvaRing can cause death she would not have used it. Testing should be a prerequisite before women are put on birth control. Testing of blood and hormones should be completed. More education and awareness of the side effects of birth control should be taught to young women … NuvaRing ended my precious daughter’s life and ruined my life. Nothing will ever be the same.”

A cry for change

Perhaps the most encouraging aspect of the FDA Citizen’s Petition is the unifying call to action and demand for accountability, transparency, and education among the many people commenting on the petition. Here is what a couple of them have to say:

Nancy: “My sister’s life was taken because of her birth control. Nuvaring birth control gave her massive blood clots and killed her just before her honeymoon. She was perfectly healthy. It is a crime that so many women are put at risk of death, just to turn a corporate profit. There are many other young women who have died because of their hormonal birth control. Putting profits before patients is a crime. Stand up and do what is right.”

Sarah: “The pervasiveness of artificial birth control is a detriment to women everywhere – fertility is not a disease and we don’t need to take medication to ‘fix it.’ The companies that make these dangerous and unnecessary medications must be more upfront and transparent when it come to what they really do to us … Women deserve to be accurately informed about their health and be respected for who they uniquely are as women. We deserve better than artificial contraception.”

Christopher: “I am an emergency department nurse. I am continually surprised at how many women I see who have a wide variety of physical problems related to various types of artificial birth control. I have witnessed hormonal birth control causing depression, mood swings, deadly blood clots, and at time hemorrhaging. More ‘mechanical’ methods such as the IUD and related devices can cause pulmonary embolisms and, should the woman become pregnant, birth defects. Women and health care providers (like the ED staff) need to be better informed regarding the risks that these forms of birth control entail. The women may opt for safer fertility awareness based methods (FABMs), and even if they do not, will be better informed regarding the potential causes of different symptoms that they may be experiencing. Health care providers need to be better informed regarding the various effects of the various artificial contraception methods so that patients can be more appropriately treated earlier in the course of their medical visits to primary care providers, urgent care clinics, or emergency departments.”

If you, too, are feeling a sense of urgency, outrage at the current lack of medical disclosure and education, and justice for the countless number of families forever changed because of hormonal birth control, please share the Citizen’s Petition, comment on it yourself, or read and share our breakdown of the petition to inform others. We know that women deserve better, and this FDA Citizen’s Petition equips us to make a real, positive change.

Posted by Madeleine Coyne Madeleine Coyne