I started thinking about endometriosis when one of my friends was diagnosed with it, about a year ago. The monthly pain she was going through was so atrocious it became impossible for her to lead a normal life during her period. She told me she was relieved to finally get a medical diagnosis for what was happening to her, yet remained frustrated by the lack of detailed information provided by her gynaecologist. We thus did what any modern person looking for answers would do, we googled the term. Basically, endometriosis is defined by an abnormal proliferation of the intra-uterine tissue (endometrium) outside (mostly around) the uterus, where it normally doesn’t belong. The endometrium, however, is the tissue that grows, breaks down and bleeds out before getting regenerated every month, and having it grow and bleed outside the uterus can cause abnormal, absolutely disproportionate menstrual pain. Around 10% of all women experience endometriosis to varying degrees, at some point in adulthood (Endometriosis.org, 2011). Besides the intolerable pain, endometriosis is associated with, among others, higher rates of infertility, although evidence on the mechanisms relating the two is still unclear.
Finding a balance between over-medicalization and negligence
Generally, there is a lack of awareness regarding this condition, and it is not systematically considered a disease, even by physicians. As a matter of fact, I had a conversation about this with my gynaecologist. Her opinion was that a condition as common as endometriosis and with no solid evidence for any major and systematic complication should not be medicalized and depicted as a serious “illness”. On the contrary, “taking the drama out of it” would help the women cope with it, she argued. This left me thinking about what underlying assumptions she was making; did she, as a practitioner exposed to this on a regular basis, consider these women to be making mountains out of molehills, or was she genuinely concerned about over-medicalization of common biological traits? When it comes to some other societal trends, obesity for example, I absolutely agree that conceptualizing it as a disease often has negative consequences. The nature of discourses shaping our conceptualisation of fat bodies as being “an abnormality, thus a disease” is certainly constructed and strongly subjective.
However, in the case of endometriosis and pelvic pain, the situation is more delicate and I disagree with downplaying it. Whether medicalized or not, awareness and acknowledgement, and I would even add respect towards it, should be increased. The problem is that endometriosis related pain is often considered drama and not taken seriously. It is indeed a shame that pelvic pain has to be officially baptised as “a disease” in order to slowly start being acknowledged as a reality, and attempted to be understood. Many girls and women come to think that their pain is no different from other women’s pain – that they are responsible for not being able to cope with it properly. It is common that people in their surrounding don’t understand why they cannot put up with “regular” menstrual pain and may even tacitly judge their apparent squeamishness. Unspecialised doctors are ill-equipped to deal with an endometriosis patient and often tend to exacerbate their feeling of inadequacy (Albee, 2013).
Strong women “remain tender, unforgettable and full of charm” in their pain
I recently came across a testimony (in French) of a young woman describing her agony and the frustration of not being understood and properly diagnosed, constantly facing her social and medical entourage’s fatalist mantra “It’s all normal, this is part of what being a woman means”. So clearly there is a recurrent trend suggesting that being a woman and suffering goes hand in hand (Ballard, 2006). Experiencing pain is portrayed as being (at least part of) a woman’s fate. Judging by President Putin’s last speech on International Women’s Day, for whom being a woman means having “a mysterious power” and the ability to “keep up with everything, juggle a myriad of tasks, and yet remain tender, unforgettable and full of charm” (Dockterman, 2016), women are expected to balance all sorts of challenges without ever complaining.
Do these unrealistic expectations explain the taboo around pain experienced by women, pelvic pain in particular? Interestingly, the Global Forum for News and Information on Endometriosis, “Endometriosis.com”, displays a list of expert recommendations. Out of all the statements, the one made by Professor Stacey Missmer, from the Boston Centre for Endometriosis, USA, caught my attention:
“We need to shout from the rooftops that pelvic pain matters!
We need to make this clear in medical school education, for general and family practitioners, for school teachers and parents. We need to make this clear by focusing in our research on patients who present with pain as often if not more than we focus on patients who present with infertility.”
Infertility versus pain – What drives general concern
This statement hints towards the problematic nature of a certain form of hierarchization of complications, according to which infertility is seen as an important complication, whereas a condition involving merely pain (however extreme it may be) is not deemed worth caring for and spending research money on. Have medical researchers started to show an interest for this condition only once associated with infertility? Does infertility have a greater externality compared to pain? Surely, pain alone does not seem to be enough to catch public attention.
Maybe this difference lies in the fact that infertility upsets the “normal” (the socially expected) course of life? Most websites on endometriosis list “Not Having Children” as a risk factor (HealthLine, Endometriosis-Surgery.com, womenshealth.gov…), but how exactly is this meant to be understood? Not having children…by when? Not having children by the time society expects you to? This could be seen as subtly contributing to the strong societal pressure establishing norms for a woman’s life.
Back to the reality of a woman’s body
Women’s menstrual pain is with no doubt poorly understood, and the issue of endometriosis is starting to gain momentum only through the “risk of infertility discourse”, leaving the problem of pain itself unaddressed (even though the latter is far more frequent). There remains a strong taboo around menstruation, even in gender progressive countries. While there is a struggle to achieve gender equality, bio-physiological realities of genders, such as menstruation are being deliberately silenced. In a society where porn, sex and nudity is displayed quite straightforwardly, how is it possible that a picture (Photo by Rupi Kaur) of a blood stained pyjama unleashes vehement attacks and gets temporarily banned from Instagram for being too “provocative” (Saul, 2015)? In a world of sterile aesthetics, where “plasticized” beauty is glorified, especially with respect to women, one does not talk about a bleeding uterus! Menstruation is simply not glamourous. But “glamour” is expected to be present in most parts of a woman’s life, even in illness. Take breast cancer, for example. Breast cancer, affecting mostly women, has been extensively marketed using the colour pink. From mediatised celebrity mastectomies to pink goodies and CSR endorsements, breast cancer has been transformed into a girly commodity, taking the focus miles away from any authentic empathy for suffering cancer patient and their loved ones (Smith, 2012, Kolata, 2015).
Let’s look at pain from a feminist perspective. Menstruation related pain is conveniently dismissed, considered unimportant compared to “serious” problems affecting lifestyle norms, such as infertility. This can have a strong effect of stigmatisation and victim-blaming. Additionally, menstruation and pelvic pain is not easily commodifiable, which could be another reason for the lack of public concern. Menstruation can hardly be associated with an image of glamour and sexiness as expected nowadays. Rather, it brings us back to the crude biological reality of the body, around which a taboo persists. What is needed to break the taboo? No judgements, no soppiness, no pink glitter. Just the acknowledgment of what menstruating means, how it looks like, how it feels, and how it can sometimes be related to intolerable suffering.
Albee, R (2013). Is endometriosis all in your head? Opinion piece retrieved from: http://endometriosis.org/news/opinion/albee-is-endometriosis-all-in-your-head/
Ballard, KD, Lowton, K, Wright, JT (2006). What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertil Steril 86:1296-1301.
“Caillou”. (2016) Tribune: atteinte d’endométriose comme une femme sur dix, elle témoigne. Kobini. Retrieved from: http://www.konbini.com/fr/tendances-2/tribune-endometriose-femme/
Dockterman, E (2016). Putin Salutes the ‘Mysterious Power’ of Women. The Times 08th March 2016.
Endometriosis.org (2011). About endometriosis. Website consulted on 29. March 2016: http://endometriosis.org/endometriosis/ )
Kolata, G (2015). A Growing Disenchantment with October ‘Pinkification’. The New York Times, 30th October 2015.
Saul, H (2015). Menstruation-themed photo series artist ‘censored by Instagram’ says images are to demystify taboos around periods. Independent 30th March 2015
Smith, SE (2012). Pinkification: how breast cancer awareness got commodified for profit. The Guardian, 3rd October 2012.