The Untold Stories of the Side Effects of Hormonal Birth Control in The United States: Nexplanon and the IUD

The Nexplanon and Me

We locked eyes. Me, with my bare arm exposed. Her, with her gloved hands and medical mask, ready to administer local anesthesia and insert the new chemical birth control, a Nexplanon implant, into my forearm. Nervously, at the last second, I asked her, “Will this affect my mental health?” 

“No,” she responded flatly. Then, I was hit by a wave of numbness followed by a pinching sensation. 

Six months later, I found myself in a medical room in a Planned Parenthood facility for the emergency removal of the bar secreting hormones in my arm. The physical side effects of continuous menstruation, rapid weight changes, as well as the mental side effects of depression and extreme mood swings resulted in the doctor who had originally inserted my Nexplanon recommending immediate removal by any medical professional with an appointment opening as soon as possible. The medical professional in charge of removing the device was shocked when she saw where it had been inserted into my arm. “This could have caused nerve or elbow joint damage, who put this in you?” I became even more distressed and certain that removal was the best course of action. Some research after the fact has informed me that there is a 0.1% chance of the implant becoming lost within a patient’s body due to improper insertion, that although very rarely, can lead to damage to the structure that binds nerves and veins in the arm. The damage done to the nerves and veins can impair the circulatory system and the nervous system, resulting in sometimes lethal complications.  

Seconds before the operation, I asked the doctor; “Why did this happen to me?” This doctor, kind and knowledgeable, shared information I wished I had known: the Nexplanon implant is an etonogestrel implant – which means it uses progestin, a synthetic version of progesterone. It is a hormone that in high levels prevents the female body from ovulating. The birth control pill is usually a balanced dosage of both progesterone and estrogen hormones. The imbalance instigated by Nexplanon can cause fluxes in the body as it tries to produce enough estrogen quickly enough to achieve equilibrium, and sometimes, the body fails to do so resulting in adverse mental and physical effects. On the homepage of the Nexplanon website, there are many lengthy paragraphs listing physical side effects such as possible tumors or cysts, swelling, blood clotting and irregular menstrual bleeding. Warnings about mental health effects are lost in among the long lists of physical symptoms and are only mentioned in the three following phrases: “mood swings, nervousness, or depressed mood” and “history of depressed mood” and “tiredness, or you feel very sad.” 

On my walk home from my emergency removal, I sobbed uncontrollably. At the time, I thought I was going insane, but I now know this was because of an extreme hormone imbalance that had shocked my system. My body had lost 64 milligrams of progestin very suddenly. I couldn’t help wondering as I laid in bed that night, my hormones slowly restoring: Is it safe to mess with my body chemistry like this, causing both my mind and body to suffer? How many other women have endured similar experiences in an attempt to prevent pregnancy? 

Courtesy of Interviewee Riley’s Instagram

Hormonal Birth Control History and Us

To many modern women or vagina havers, hormonal birth control is a form of insurance – insurance of control over their future. The ability to prevent unwanted pregnancy enables women to pursue other aspects of life other than motherhood. Through use of this kind of birth control, goals of higher education and a career become more tangible and participation in the economy and workforce more manageable for women because their life choices are less burdened by familial obligations before desired. The efficacy rate of condoms, 98% if used correctly, 85% if fumbled, does not promise the same reliable control over pregnancy as hormonal options, which is one of the many reasons in the last few decades chemical birth control has risen in popularity. Many women also turn to hormonal birth control as a way to treat painfully intense or irregular menstruation, or help tame acne prone skin. But as effective chemical birth control is, are we thoroughly informed about what we allow to enter our bodies?

There is a dark history of chemical birth control and implants in the United States. Strong minded women wanting to enter the workforce free of fear of unexpected pregnancy could finally do so in 1959 with the approval of the birth control pill for general sale. It wasn’t until the Nelson hearings in 1970, however, that regulations were put in place that required informational packets listing what hormones were entering women’s bodies and the possible side effects, along with mandated lectures from both the prescribing doctor and pharmacist to use hormonal birth control (Crime Junkie). 

Although legally required, I did not receive a medical lecture informing me of the possible side effects from anyone before the Nexplanon was implanted into my arm. A quick google search had only warned me of possible minor complications like acne, headaches, weight changes, and menstrual changes. Being the naive young adult I was freshly out of high school, I promptly threw away the seemingly meaningless pamphlet with extensive minuscule writing on it the doctor handed me without explanation after the minimally invasive, yet rattling procedure. Nobody had told me what information the pamphlet contained. How many other women of the 3.3 million with the Nexplanon implant worldwide were cheated out of the knowledge their own physical and mental health would come to depend on and be continually affected by? I suffered the consequences, minimal but still traumatizing. Many other women have had similar or worse experiences. 

A Nexplanon Nightmare

Savannah H., a third year student at UC Santa Cruz, experienced mental health complications after getting the Nexplanon implanted in 2018. “I had never used birth control before Nexplanon. Honestly if I had I think I would’ve been more knowledgeable about the side effects maybe I would have gotten it removed sooner.” Savannah went on to share, “The first 5 months were difficult, I also had intense bruising that covered my whole underarm. “

Courtesy of Interviewee Savannah’s Instagram

“Those first months I tried really hard to tell myself that the emotional instability that I was feeling was normal and a result of starting birth control. I had a follow up appointment with my doctor and told her about the mental health effects I was having and she told me to stick it out and that was normal. It was nice to get reassurance but ultimately not worth feeling like shit. After about 5 months, I appeared to stop getting side effects.”

“However, I am suspicious as to if my body finally accepted the Nexplanon or if I just got used to feeling depressed.”

Ultimately, Savannah decided the negative mental health effects she was experiencing were not worth skipping the hassle of monthly periods, especially when that stopped being the case. “I was initially hyped that I wasn’t getting periods anymore but they came back and I was bleeding nonstop for three months straight. That really sucked. I also was in a terrible mental health space, and it could’ve been for a number of reasons, including that I was diagnosed with walking pneumonia for about four months and constantly felt like I couldn’t breathe and was about to choke to death, but the Nexplanon definitely did not help. I began to ask myself why I am putting myself through this? Is my mental health really worth not having to use protection? Absolutely not. I decided I wanted to get it out.” At this point in time, the COVID-19 pandemic had hit worldwide, which resulted in Savannah moving from the United States to reunite with her family in Germany. “It was really difficult to find a doctor in Germany who was willing to take the implant out of my arm. I learned that Nexplanon isn’t allowed as a form of birth control in Germany, so not many doctors deal with taking it out. Eventually I found one who was willing to take it out, but he doesn’t do any insertions. However I didn’t care about that because I was definitely not getting it inserted ever again. He told me that Germany doesn’t deal with Nexplanon at all because of how questionable the side effects are and how often women are negatively impacted by it. He told me the most popular and his best recommended form of birth control was the pill. He said the studies have shown that women prefer this form (side-effect wise) over any other kind.” I was shocked when I heard this. Upon further research, I discovered that Nexplanon, or the Implanon NX as it is known in some places, and its predecessor the Implanon are available in over ninety countries, not limited to but including first Indonesia in 1998, then Austria, Belgium, Germany, Greece, Ireland, Luxembourg, Malta, the Netherlands, Slovakia, Poland, Portugal, Spain, Denmark, Estonia, Finland, France, Iceland, Italy, Norway, Romania, Sweden, UK, US in 2006, and most recently, Canada as of May, 2020. The fact that doctors, the people who work with patients and see side effects manifest in their patients first hand, in other first world countries like Germany do not administer Nexplanon even though it is licensed for sale because of the well known, serious negative mental side effects is information I wish I had known while making the decision of which hormonal birth control would be entering my body and affecting my life. I’m sure Savannah and many other women would feel the same way.

She then expressed what it was like to live without Nexplanon;

“Immediately when he removed it I felt a huge weight come off my shoulders. I actually felt lighter and I swear colors seemed brighter. I really noticed that I was feeling happier instantaneously.”

This wonderdrug implant that promises the miracle of consequence free exploration of sexuality, security, and the management of pain and health clearly does not perform as advertised for everyone. Some women, like three of my current roommates, have lived with the implant for years, grateful for its effective pregnancy prevention. Frequently, though, they discuss the probability that some episodes of sadness are not unaided by their implant. One of them stated frankly, “It’s hard to tell at this point whether I’m actually sad or this thing is making me sad.” If even the users of this hormonal birth control are unsure of the mental side effects, how can the FDA, scientists who study the effects second hand, actually know what’s going on and unabashedly approve it for use and sale? 

The IUD, Its Past and Present

Graphic by Ella Suh, not to scale

Although the FDA didn’t monitor medical devices or implants until 1976, the predecessors of the modern IUD or intrauterine device such as the Dalkon Shield were implanted in women. Lies about its efficacy rate and safety resulted in many women killed or rendered infertile involuntarily worldwide, about 20 and 327,000 respectively in the United States alone (Crime Junkie). Now, thanks to FDA regulations, the IUD experience is supposed to be a safe and viable way to avoid unwanted pregnancy. Unfortunately, many women still experience life threatening complications because they chose to use the IUD. Riley E., a student at UC Santa Cruz, shared her traumatic experience using the Mirena IUD with me.

“The implant hurt significantly… I did discuss my discomfort and bleeding with my mom because the pain was starting to scare me, but it went away. On April 7th 2020, I got an intense stomach pain and collapsed. On April 9th, the pain had gotten so horrible that I puked through the night without eating anything, constantly crying and screaming just to move my body in any way. My boyfriend tended to me as I refused to go to the hospital due to potential COVID-19 risk, but eventually after discussing with my mom and no longer being able to fully stand up, my boyfriend rushed me to the hospital. During the ultrasound I could not stop screaming everything hurt so intensely … it turned out inconclusive because of how much pain I was in. Later, a nurse came to tell me that my blood work had come back and I was pregnant. I was shocked since my gynecologist had told me the IUD was the most effective form of birth control. Then I went in for a CAT scan. It turned out that the pain that made me collapse a couple days prior was an embryo being shoved into my fallopian tube by my IUD. The embryo ruptured my tube and put 1100 cubic centimeters of blood in my stomach. All of my blood content levels were below half of what they should be.” 

Riley’s terrifying diagnosis of an ectopic pregnancy, a form of faulty pregnancy when a developing embryo gets caught in the fallopian tube, is not a situation anyone should be surprised with, let alone a young student alone on the west coast of the country while her family resides on the east coast. Her life on the line, Riley headed into emergency surgery. “The surgery was to save my life. It went well, only one fallopian tube was ruptured and had to be completely removed along with all of the blood. I asked my doctor if I could have kids in the future and she told me although it’s possible, there is no way to tell until it happens.” After all of the medical turmoil and unanswered questions about her future, the nightmare was not yet over. Riley explains the recovery process, “I could not use my stomach to sit, stand, or basically anything but gently walk for 6 weeks. I could feel the significant lack of blood in my body for a long time and I still take iron to this day. I had not had hormonal issues until this surgery but since half of my reproductive organ was removed, I have been having issues expressing myself how I intend to.” Riley, typically not someone who cried often previously, further discusses the hormonal backlash of her surgery, “I now find myself crying multiple times a week for almost no reason and getting angry very quickly, which is not how I am or want to be. It was a lot worse right after my surgery and it is something I will have to deal with and work on until I can feel at peace again.” 

I asked her if she’d ever consider the IUD again. She responded, “I think about the IUD frequently. I loved not having my period but I do not want to risk my last little chance of possibly having my own kids just to avoid bleeding.” When asked if she’d recommend the IUD to a friend, she responded, “I know that the risk of having the IUD is not fully stated to young girls who just listen to their doctor. Gynecologists shove IUDs into unknowing girls all the time. When I started college, more than half of my female friends had an IUD. By the winter of 2020 none of them did but me. My friend also experienced IUD issues resulting in a serious doctor’s visit and immediate removal of the IUD since she had gotten an ectopic pregnancy, too.”

“Even though the IUD is 99% effective, that 1% of the time that you will get pregnant is most likely going to be ectopic. I think that given the IUD has such a high chance of a life threatening pregnancy nobody should be recommending this form of birth control.” 

Yet, just like the Nexplanon, some women use this form of hormonal birth control and experience little to no negative side effects. Tessa L., a student at UC Davis, says that although the insertion process was painful and laborious, she doesn’t regret her decision in the slightest. No hormonal side effects, no physical complications, and most importantly to her, almost no possibility of pregnancy while she finishes her bachelor’s degree. She credited her doctor with informing her thoroughly about the efficacy, risks, effect on menstruation, and insertion process IUD before the procedure. Tessa has had the Skyla IUD, a smaller and less long lasting version of the Mirena IUD, the model Riley had, for two years now without issue and plans to keep it for the recommended three years and replace it after that.

Now

After a full summer free of hormonal birth control, I was back to feeling like myself again. My body had adjusted and had fallen back into a natural rhythm, both menstrually and mentally. The lows I felt didn’t last as long and were less intense, and usually sparked by an event. No more intense spells of sadness out of nowhere. But, as a modern woman with a college degree to finish, I knew this stint free of external hormones had to come to an end. I had a doctor prescribe me the least intense form of the birth control pill, hoping to avoid as many side effects as possible and maintain my newly refound rhythm. For three days, I popped the pill (0.1mg/0.02mg levonorgestrel and ethinyl estradiol) into my mouth each morning along with my daily pick-me-up cup of strong iced coffee.

Author’s Photos

All seemed well until the night of that third day. One of my closest guy friends and housemate at the time pulled me aside from the group of our friends we were with and asked, “Are you feeling okay? You’ve been acting kind of off… for like three days.” I was dumbfounded. Was I someone completely different without hormonal birth control? Was my friend more in touch with my true self than me? Was I being blinded by the hormones?

I still take the lightest version of the birth control pill recommended to me by a doctor, however, the thought that I might be a happier, brighter me without it has never left my mind. As Savannah H. said, “It is crazy to me how women are expected to jeopardize their mental health for months and are told that it is normal and to stick with it. I had to get the Nexplanon removed to know that I am fully in control of how I’m feeling.” By risking autonomy over our own mental health in exchange for control over our own physical condition, we, as well as millions of women worldwide, have sacrificed an integral factor of our wellbeing. 

Interviewee Savannah H and author Sonya P

Sources 

Interviews over text: Savannah Hallgarth on Nexplanon, Riley Engle and Tessa Leonard on the IUD (October 2020)

Center for Devices and Radiological Health. “A History of Medical Device Regulation and Oversight in the US.” U.S. Food and Drug Administration, FDA, https://www.fda.gov/medical-devices/overview-device-regulation/history-medical-device-regulation-oversight-united-states

“Contraceptive Implants.” KFF, 1 Oct. 2019, http://www.kff.org/womens-health-policy/fact-sheet/contraceptive-implants/. 

“NEXPLANON® (Etonogestrel Implant) 68 Mg Radiopaque ǀ Official Site.” NEXPLANON® (Etonogestrel Implant) 68 Mg Radiopaque, http://www.nexplanon.com/. 

“Package Leaflet: Information for the User Nexplanon® 68 Mg Implant for Subdermal Use.” Medicines.org.uk, Feb. 2020, http://www.medicines.org.uk/emc/files/pil.5720.pdf. 

Parenthood, Planned. “Birth Control Services: Methods & Effectiveness.” Planned Parenthood, http://www.plannedparenthood.org/get-care/our-services/birth-control. 

Pattman R, Sankar N, Handy P, Price DA (2010). Oxford Handbook of Genitourinary Medicine, HIV, and Sexual Health. OUP Oxford. p. 369. ISBN 9780199571666. Archived from the original on 2017-09-24. 

Paynter, Martha. “Nexplanon, a Three-Year Birth Control Implant, Is Now Approved for Use in Canada.” Medical Xpress – Medical Research Advances and Health News, Medical Xpress, 1 June 2020, medicalxpress.com/news/2020-06-nexplanon-three-year-birth-implant-canada.html. 

“Progesterone.” Progesterone | Hormone Health Network, www.hormone.org/your-health-and-hormones/glands-and-hormones-a-to-z/hormones/progesterone. 

Senanayake, Pramilla. “Atlas of Contraception.” Google Books, CRC Press, 14 Apr. 2008, books.google.com/books?id=7dDKBQAAQBAJ. p. 53.

“Trusted Care for a Variety of Neurovascular Conditions at Dignity Health.” Neurovascular Conditions | Sacramento Hospitals | Dignity Health, http://www.dignityhealth.org/sacramento/services/neurological-care/clinical-expertise/neurovascular-conditions. 

“WHITE COLLAR: The Dalkon Shield.” Crime Junkie Podcast, 4 Mar. 2020, crimejunkiepodcast.com/white-collar-dalkon-shield/.