Content warning: this piece contains talk of menstruation, sexism, and also contains photos of my abdomen after surgery.
by Keira Edwards-Huolohan
Thirteen years. I waited thirteen years before I was diagnosed with endometriosis. When I was twelve, I had terrible period pain; I would have to call my mum from the school office and ask to be picked up, then spend the day in bed loaded up with painkillers, trying to sleep through the pain. I would dread my period each time it was coming, thinking about the pain that I would be in. I had to take time off work and uni whenever it came. The pain became a part of my normal life. Doctors and everyone around me said that period pain was normal. Doctors dismissed it as a 'normal women's problem', probably assuming that I was just 'weak' and complaining and 'hormonal'. So I never really questioned it after that. At age twenty-two I started being in pain during sex; I avoided sex for 3 months due to fear. That's when I realised I should maybe ask a doctor about it. A year later, I went under the knife and I was diagnosed with endometriosis. I finally understood why I had been in pain for all those years. Unfortunately, my story is not uncommon.
Please note that while I do focus on women in this article, I myself am genderqueer, and there are many people with endometriosis who are not women (e.g. men and other non-binary people like myself). I have no intention to erase these people (and myself) from this article, however the majority of people who suffer from endometriosis are women and in our cissexist and binary loving society the scientific research that is done focusses on cis women (women who were assigned women at birth and found this assignation felt right when they were older) and also (wrongly) conflates ovaries, uteruses and vaginas with 'womanhood' and women. I also have a rather wide range of privileges and circumstances which effect how I write about this issue; I am white, have access to free healthcare (I didn't pay for my hospital visit, but did wait a few months), and have a stable job that allowed me to pay for things while I had a week off to recover.
I've only had an official diagnosis of endometriosis for 5 months now, but it has been an eye opening experience (which I may write about later). Many of the people (mainly women) in the groups I'm in have talked about the years that it has taken for someone to take them seriously. I've even read comments by a few women in facebook discussions who have said that it's taken decades. I was shocked. Apparently though, delays in diagnosis for people with endometriosis are common. A survey of 261 Norwegian women in 2003 found that women waited anywhere from half a year to 12.9 years for a diagnosis (Husby, Skipnes & Moen 2003). Another study (Hadfield et al 1996) surveyed women from the UK and USA who also experienced long delays. In the UK, 0.04 to 15.88 years. In the USA, it was 2.68 to 20.78 years.
Getting a diagnosis is important, not just for physical health, but also mental health. At least, that's what I've found; since I've been able to put a name to what is wrong with me, I've felt more certain and more in control. I may have no control over what it does to me, but I know what I can and can't do to help manage symptoms. I know what it is, I know what it can do. I can talk to other people about it. The results of a study by Ballard, Lowton & Wright in 2006 showed similar results to my experiences:
Women benefited from a diagnosis, because it provided a language
in which to discuss their condition, offered possible management
strategies to control symptoms, and provided reassurance that symptoms
were not due to cancer. Diagnosis also sanctioned women’s access to
social support and legitimized absences from social and work obligations.
Once you have a diagnosis, you can seek out support groups, which are a great emotional help. These groups have helped me to feel like I am not alone; like I am not the only one going through this experience. The people in these groups have often expressed similar feelings. A diagnosis gives a name to the monster that you need to face, instead of leaving you grappling in the dark with the beast, it brings some light to it and defines it. This allows you to arm yourself with the necessary tools to face the monster.
Why is it that people are waiting so long to be diagnosed with endometriosis, especially when a diagnosis can be so helpful and important? There are the usual culprits when it comes to health; finances, location, ability, time, sexuality, racialisation and more can all effect whether or not people can access healthcare. What I believe might be different about endometriosis is the fact that it is a disease that is associated with periods and uteruses; things that are not talked about in mainstream society.
A study that I found very interesting (Nnoaham et al 2011) looked at women from a wide range of places and backgrounds. Those researchers discovered that fatphobia (people forming negative stereotypes based on a person's apparent fatness) got in the way of diagnosis, as well as whether or not people had access to private health care. It also spoke about the effect that this disease has on a person's ability to work. If it affects someone's ability to work, it affects their income and thus their quality of life. A similar study showed that women in Brazil who were younger were less likely to be taken seriously (Arrudal et al 2003). These studies show how diagnosis delay is likely affected by the patient's income, access to healthcare, and prejudices such as fatphobia and ageism.
The unique aspect of endometriosis though is that it is a disorder of the reproductive system that is generally associated with cis women. To talk about endometriosis is to talk about periods, sex, uteruses, vaginas. These are things that we as a society do not want to talk about. We hide periods, we only put vaginas in porn and we most certainly do not discuss periods. This is because there is a stigma associated with menstruation. Thus most people pretend or genuinely believe that pain during menstruation and sex is normal, instead of talking about it. A lot of the time people with endometriosis won't seek help until there is a “circuit breaker”, as Manderson, Warren & Markovic (2008) call it, such as an inability to conceive, disruptions to everyday life, or in my case, pain during sex.
A study by Roberts et al in 2002 found that when people thought a woman was menstruating (through her dropping a tampon for example) this lowered her status in their minds and made them avoid her. Negative attitudes towards menstruation and the associated reproductive system (ovaries, vagina, uterus) are evident all throughout our culture. I personally used to be ashamed of getting pads or using them and would hide them from people and I was not comfortable talking on the topic at all. This is not an uncommon reaction. 244 women and men (apparently non-binary folks were not surveyed) were asked about their perceptions of a woman who was menstruating (Forbes et al 2003). They thought that she was sad, irritable and angry. Men in particular thought she was less sexy, reasonable, and clean and fresh. The men thought she was more spacey and annoying. It's likely that all people have or do hold these attitudes to a degree. This includes menstruating people and health professionals.
People who menstruate are often ashamed to talk about menstruation due to the stigma that surrounds this natural bodily function. Unfortunately, this lack of discussion about this issue can lead to people being misdiagnosed. I also believe that some doctors might have a tendency to use negative gender stereotypes when talking to their patients about menstruation. For example, if it is painful, they may think that this person is just a ‘weak woman’ and that the pain is normal. This could also be true of the person with endometriosis; they may have internalised ideas about menstruation being painful normally, and of sex being painful normally. They may also have internalised the idea that menstruation is 'dirty' and 'shameful' and thus be less likely to talk about it.
Delays in the diagnosis of endometriosis occur at an individual
patient level and a medical level, as both women and family doctors
normalize symptoms, symptoms are suppressed through hormones, and
nondiscriminatory investigations are relied upon.
(Ballard, Lowton & Wright 2006)
As mentioned previously, there are a number of factors that influence the length of time it takes to get diagnosed (i.e. age, weight). I don't think that these are the major reasons however. I think that the silence surrounding endometriosis has its roots in sexism. Mainly society's dislike of and misconceptions about what is commonly thought of as the 'female' reproductive system - the uterus, menstrual cycle, vagina, and ovaries.
Endometriosis affects 5-10% of menstruating people in Australia (Women's Health Queensland Wide Inc. 2010), making it almost as common as breast cancer (12.5% of women under 85 affected). In comparison to breast cancer though, it is not as well known nor as well funded. People are fine with saving breasts but when it comes to talking about menstruation, we're not so eager. There really shouldn't be such a large delay in getting a diagnosis for the people who are affected. This is a huge problem and it needs to be rectified. Some ways to do this is to create more dialogue about menstruation; what is normal and what is not. A large part of the responsibility lies with doctors, who need to investigate more thoroughly. However, many doctors, especially in public practices, have very severe time constraints. I think that this may actually reflect not just on society’s vilification of menstruation but also our health system in Australia. We need to start talking to each other about what is normal and what is not. We need to end the silence about endo.
If you think that you might have Endometriosis, please contact your doctor.
To learn more about endometriosis, please head to http://www.endometriosisaustralia.org.
Living with a chronic illness can be hard. If you need someone to talk to, please call Beyond Blue on 1300 22 4636.
Arrudal, M, Pettal, C, Abrao, M & Benetti-Pinto, C 2003, “Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women”, Human Reproduction, vol. 18, no. 4, pp. 756 – 759, <http://humrep.oxfordjournals.org/content/18/4/756.long>.
Ballard, K, Lowton, K & Wright, J 2006, “What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis”, Fertility and Sterility, vol. 86, no. 5, pp. 1296 – 1301.
Forbes, G, Adams-Curtis, L, White, K, & Holmgren, K 2003, “The Role of Hostile and Benevolent Sexism in Women's and Men's Perceptions of the Menstruating Woman”, Psychology of Women Quarterly, vol. 27, no. 1, pp. 58 – 63, <http://onlinelibrary.wiley.com/doi/10.1111/1471-6402.t01-2-00007/abstract>.
Hadfield, R, Mardon, H, Barlow, D & Kennedy, S 1996, “Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK”, Human Reproduction, vol. 11, no. 4, pp. 878 – 880, <http://humrep.oxfordjournals.org/content/11/4/878.short>.
Husby, G, Skipnes, R & Moen, M 2003, “Diagnostic delay in women with pain and endometriosis”, Acta Obstetricia et Gynecologica Scandinavica, vol. 82, no. 7, pp. 649 – 653.
Manderson, L, Warren, N & Markovic, M 2008, “Circuit Breaking: Pathways of Treatment Seeking for Women With Endometriosis in Australia”, Qualitative Health Research, vol. 18, no. 4, pp. 522 – 534, <http://qhr.sagepub.com/content/18/4/522.short>.
Nnoaham, K, Hummelshoj, L, Webster, P, d'Hooghe, T, de Cicco Nardone, F, de Cicco Nardone, C, Jenkinson, C, Kennedy, S, Zondervan, K, 2011, “Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries”, Fertility and Sterility, vol. 96, no. 2, pp. 366 – 373, <http://www.fertstert.org/article/S0015-0282%2811%2900876-4/abstract>.
Roberts, T, Goldenberg, J, Power, C, & Pyszczynski, T 2002, “”Feiminine Protection”: The Effects of Menstruation on Attitudes Towards Women”, Psychology of Women Quarterly, vol. 26, no. 2, pp. 131 – 139, <http://pwq.sagepub.com/content/26/2/131.short>.
Women's Health Queensland Wide Inc. 2010, “Endometriosis Fact Sheet”, Women's Health Queensland Wide Inc., viewed 19th June 2015, <http://www.womhealth.org.au/conditions-and-treatments/205-endometriosis>.
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