Winner our Mind the Research Gap Student competition in partnership with WHAM, written by Chloe Curtis, PhD student in Anthropology at the University of Oxford.
"Chloe’s artwork and accompanying essay offered a science-backed yet personal perspective on the importance of patient feedback in driving contraception research"
This artwork represents the current research gap that fails to investigate the side effects of hormonal contraception. It is to be viewed in conjunction with my essay. It displays the dominant narrative that side effects are ‘minor’ or a matter of misinformation; a consequence of the inherently ‘hysteric’ female whose experiences are ‘all in your head’.
The prevalence of circles and lines in the artwork refer to female sex hormone levels, their cyclical production and how they are levelled with the use of hormonal contraception. The circle surrounding my face in the middle of the artwork is used to highlight that side effects are ‘all in my head’ and to present myself as a target in a society that primarily sees my body as a reproductive body that should be controlled. Pictured with my arms raised and with a target on my face, I am the victim of my own biology.
The multiple outlines of my body and facial profile depict me contemplating my own thoughts, stuck in my own head. These images and thoughts all crowd each other, showcasing the overwhelming expectations and impacts women may face in their experience of hormonal contraceptive use. All of this is placed on top of a facial profile of a different woman to reflect that this is a global research gap, affecting all women.
The artwork is a digital amalgamation of photographs of me and my own artworks. These were created with a variety of mediums including watercolour, pen and inks, and oil pastels. They are digitally superimposed on each other, with different transparencies, sizes and orientations.
Accompanying essay: It's all in your head
Side effects are a key reason why hormonal contraception is discontinued [1, 2]. These can include changes in menstruation, loss of libido, blood clots, headaches, and nausea. However, side effects are commonly branded as ‘minor’ by dominant medical and public health narratives; mere side effects that pale in comparison to the technology’s contraceptive abilities. This presents a clear gendered research gap for two key reasons. Firstly, hormonal contraception is only available to those medically defined as female. Secondly, the voices of those who use hormonal contraception remain absent from most research literature [3, 4].
Prior to being available as a contraceptive in the UK in the 1960s, the same drug was used to treat other conditions believed to be caused by the so-called ‘unstable’ cyclical production of female sex hormones, including what was commonly referred to as female ‘hysteria’. The drug’s contraceptive abilities were soon capitalised on and clinical trials confirmed their effectiveness, with concerns raised classified as ‘non-compliance’ or ‘user-failure’ [5, 6]. The contraceptive was king and could only fail due to its female user, whose complaints were representative of their inherently ‘unstable’ and ‘hysteric’ sensibilities. This undermined side effects as a matter of false belief with little biological truth, simply put: ‘it’s all in your head’.
Nearly 40 years after initial availability, Vitzthum & Ringheim’s [7] study was one of the first to investigate whether differential experiences of side effects from hormonal contraceptive use had a physiological cause. They confirmed women in Bolivia had naturally lower levels of progesterone than North American women and use of the most commonly prescribed hormonal contraceptives had caused side effects that were severe, resulting in a significantly reduced quality of life, including impacts on productivity and social relations.
This demonstrated that one pill does not suit every woman equally. While the number and types of hormonal contraceptives have multiplied since initial availability, barriers such as financial burden and provider preference prevent free choice and access [8]. Furthermore, no large database has been created to offer greater clues about what type of contraceptive might suit one body more than another. Consequently, individuals must try different types at their own financial and personal expense.
Data from Denmark confirms that hormonal contraceptive use is associated with subsequent use of antidepressants and a first diagnosis of depression [9]. While causation is not confirmed, it is known that use of hormonal contraception can alter one’s hypothalamic-pituitary-adrenal (HPA) axis, which is responsible for an individual’s stress response [10, 11]. Deregulation of the HPA axis can raise baseline levels of the stress hormone cortisol and consequentially cause a blunted stress response, creating a chronic state of stress and a disruption to an individual’s ability to manage challenges and emotions. An increased risk of ‘violent death’, including suicide, has also been found with use of hormonal contraception [12]. When conducting my own research in 2021, one user explained: ‘I went to three different doctors and none of them believed me. They definitely thought that pregnancy was the worst thing, not for me to have suicidal feelings’ [13].
Nevertheless, public health initiatives continue to present side effects as ‘minor’, a matter of misinformation or even myth [14]. On referring to the presence of possible side effects, counselling and education is recommended [15], not only continuing to perpetuate ideals of the ‘hysteric’ woman, that once educated will succumb to reason, but continually prioritising the need to control female fertility over other consequential health impacts.
The differential treatment of hormonal contraceptive side effects became plainly obvious in the midst of the COVID-19 pandemic that saw the AstraZeneca vaccine scrutinized for its possible side effect of thrombosis, when the same risk from the use of combined hormonal contraceptives is suggested to be at least 50 times higher [16]. This treatment is further evidenced by the continual absence of a male hormonal contraceptive due to the dangers of side effects, while clinically recognised yet under-acknowledged for women [17].
The research gap is clear. One extremely clear solution is to listen to the voices of those who use hormonal contraception. This could be implemented by the development of national side effect ‘biobanks’, which would document experiences from users point of view, and not simply from the list of side effects that are clinically recognised. Other information, including for example the users age, ethnicity and any known medical conditions could begin to suggest which side effects may be more prevalent and associated with different bodily factors. Building on findings from Vitzthum & Ringheim [7], this information would be greatly aided by individuals hormone profiles on collection of responses.
These side effect biobanks would be the precursor to the possible development of a test that could narrow or determine which hormonal contraception could be most suited to each individual body, rather than the current ‘trial and error’ route, where individuals try multiple types if they have access.
Lastly, and quite simply, more investment and innovation is needed. In 1988 Lincoln & Kaeser [18] asked ‘whatever happened to the contraceptive revolution?’. In 2022, ‘tinkering’ of the pills original design continues [19], with a lack of alternative methods being developed that target other biological mechanisms; methods that are feasible but fail to be prioritised [20]. As a working hormonal method already exists, with side effects deemed to be of little concern, drug companies fail to consider innovation financially worthwhile. Only 2% of contraceptive revenue gets invested into research and development, compared to a pharmaceutical industry standard of 20% [20].
Hormonal contraceptives are one of the most widely prescribed drugs in history, with at least 100 million current users [21, 22]. They have been a revolutionary force for redefining sexual and female liberation. But it’s time to revolutionise again; to rethink usual narratives that have often left women questioning the validity of their own experiences, with disempowering consequences for individual self-worth and achievements in society. These experiences are not ‘all in your head’ but a failure of wider society to recognise them.
References
[1] Castle S, Askew I. Contraceptive Discontinuation: Reasons, Challenges, and Solutions. Population Council. 2015. Available from: https://popdesenvolvimento.org/images/imprensa/FP2020_ContraceptiveDiscontin uation_SinglePageRevise_12.16.15.pdf [Accessed 12th April 2022]
[2] Ali M, Cleland J, Shah I. & World Health Organization. Causes and consequences of contraceptive discontinuation: evidence from 60 demographic and health surveys. World Health Organization. 2012. Available from: https://apps.who.int/iris/handle/10665/75429. [Accessed 12th April 2022]
[3] Hardon A. Women's views and experiences of hormonal contraceptives: what we know and what we need to find out. In: T. K. S. Ravindran, M. Berer & J. Cottingham (Eds.), Beyond acceptability: users' perspectives on contraception, pp. 68-76. Reproductive Health Matters for the World Health Organization. 1997. Available from: http://apps.who.int/iris/handle/10665/42012. [Accessed 12th April 2022].
[4] Inoue K, Barratt A, Richters J. Does research into contraceptive method discontinuation address women's own reasons? A critical review. Journal of Family Planning and Reproductive Health Care, 2015, 41, pp. 292-299. DOI: 10.1136/jfprhc2014-100976
[5] Junod SW, Marks L. Women's Trials: The Approval of the First Oral Contraceptive Pill in the United States and Great Britain. Journal of the History of Medicine and Allied Sciences, 2002, 57(2), pp. 117-160. DOI: 10.1093/jhmas/57.2.117
[6] Oudshoorn N. The decline of the one-size-fits-all paradigm, or, how reproductive scientists try to cope with postmodernity. In: MacKenzie D, Wajcman J. (eds). The Social Shaping of Technology. Open University Press. 1999, pp. 325-340.
[7] Vitzthum VJ, Ringheim K. Hormonal Contraception and Physiology: A Research-Based Theory of Discontinuation Due to Side Effects. Studies in Family Planning, 2005, 36(1), pp. 13-32. DOI: 10.1111/j.1728-4465.2005.00038.x
[8] Olszynko-Gryn J. Contraceptive technologies. In: The Population Knowledge Network (eds). Twentieth Century Population Thinking: A Critical Reader of Primary Sources. Routledge. 2016, pp. 172-209.
[9] Skovlund CW, Mørch LS, Kessing LV, Lidegaard Ø. Association of Hormonal Contraception With Depression. JAMA Psychiatry, 2016, 73(11), pp. 1154-1162. DOI: 10.1001/jamapsychiatry.2016.2387
[10] Hertel J, König J, Homuth G, Van Der Auwera S, Wittfeld K, Pietzner M, Kacprowski T, Pfeiffer L, Kretschmer A, Waldenberger M, Kastenmüller G, Artati A, Suhre K, Adamski J, Langner S, Völker U, Völzke H, Nauck M, Friedrich N, Grabe HJ. Evidence for Stress-like Alterations in the HPA-Axis in Women Taking Oral Contraceptives. Scientific Reports, 2017, 7(14111), pp. 1-14. DOI: 10.1038/s41598-017-13927-7
[11] Lewis CA, Kimmig ASS, Zsido RG, Jank A, Derntl B, Sacher J. Effects of Hormonal Contraceptives on Mood: A Focus on Emotion Recognition and Reactivity, Reward Processing, and Stress Response. Current Psychiatry Reports, 2019, 21(115), pp. 1-15. DOI: 10.1007/s11920-019-1095-z
[12] Lanfranchi A. Hormonal Contraception and Violent Death: The Physiological and Psychological Links. Frontiers in Behavioural Neuroscience, 2021, 15, pp. 1-13. DOI: 10.3389/fnbeh.2021.667563
[13] Curtis C. Forthcoming. DPhil Anthropology, University of Oxford.
[14] Grimes DA, Schulz KF. Nonspecific side effects of oral contraceptives: nocebo or noise? Contraception, 2011, 83(1), pp. 5-9. DOI: 10.1016/j.contraception.2010.06.010
[15[ WHO. Contraception: Evidence brief. 2019. Available from: https://apps.who.int/iris/handle/10665/329884. [Accessed 12th April 2022]
[16] The Lowdown. The risk of blood clots from the Combined Pill is at least 50 times higher than the AstraZeneca jab. Instagram. 2021. Available at: https://www.instagram.com/p/CMfgc95HCRl/. [Posted 16.03.21] [Accessed 18.03.21]
[17] Abbe C, Roxby AC. Assessing safety in hormonal male contraception: a critical appraisal of adverse events reported in a male contraceptive trial. BMJ Sexual & Reproductive Health, 2020, 46, pp. 139-146. DOI: 10.1136/bmjsrh-2018-200206
[18] Lincoln R, Kaeser L. Whatever Happened to the Contraceptive Revolution? Family Planning Perspectives, 1988, 20(1), pp. 20-24. DOI: 10.2307/2135593
[19] Watkins ES. How the Pill became a Lifestyle Drug: The Pharmaceutical Industry and Birth Control in the United States Since 1960. American Journal of Public Health, 2012, 102(8), pp. 1462-1472. DOI: 10.2105/AJPH.2012.300706
[20] Chamberlain S, Vogelsong K, Weinberger M, Serazin E, Cairns-Smith S, Gerrard S. Reboot contraceptives research - it has been stuck for decades. Nature, 2020, 587, pp. 543-54. DOI: 10.1038/d41586-020-03287-0
[21] Petitti DB. Clinical practice. Combination estrogen-progestin oral contraceptives. N. Engl. J. Med, 2003, 349(15), pp. 1443-1450. DOI: 10.1056/NEJMcp030751
[22] Sanabria E. Plastic bodies: sex hormones and menstrual suppression in Brazil. Duke University Press. 2016