Welcome to the final post in my three part Endometriosis Awareness Month series. This month I have seen so many stories about endometriosis in mainstream media and it’s fantastic because more and more people are beginning to understand this disease. Hopefully greater understanding by both the public and medical professionals is becoming a reality and more women are realising that they don’t have to put up with this. Thanks for reading!
“How could anyone think that women are imagining that much pain?” my friend asked in disbelief. “And these are doctors too, basically saying: ‘Nope, there’s nothing wrong with you, go see a psychiatrist’,” he continued, shaking his head. I was seventeen and in first year university, he was driving me home after we’d spent the day catching up over coffee at the art gallery. We’d cut our afternoon short after I’d starting getting some pretty bad cramps and back pain, to which I had responded by thinking: unfair, my period doesn’t even start until next week and I haven’t decided if I’ll skip it yet!. I hadn’t seen him do a good rant since he had told me about the Coalition cutting agricultural research funding the year he graduated from his agriculture degree. As we drove towards my suburb he started telling me about how a friend of his had endometriosis, the kind with permanent scarring and adhesions, and that she had been told by many a doctor that it was all in her head and that she needed psychiatric help, not medical.
That’s not a new story, and at seventeen it wouldn’t be the last time I heard it. No one had as yet told me it was in my head, but at this point people had told me that it couldn’t be so bad…almost everyone had pain, but they didn’t seem as down about it as me…so maybe I just needed to talk to someone “or something”. It was more subtle than most, the implication that my brain was somehow defective and imagining the extent of my pain. What was worse was that I believed it for so long. I felt like an idiot for believing this crap once I did get my diagnosis. It’s not for a while that you begin to understand a few things, one of which is that someone who has never felt what you have felt will never understand and that there comes a point where it’s you that has to believe yourself. There was a switch over in my brain, and it happened after my surgery, after my diagnosis, and not immediately either. It took a few weeks to truly realise that this wasn’t in my head, it was real and I saw the proof. One would think that isn’t something you have to mull over, and that having a surgeon say “you have it” would be enough. But what you have to understand is that when you believe that everything you feel and experience is completely normal for so long, it’s hard to stop thinking that way. Society tells us to think this way too, so it’s a part of your thinking and it’s hard to shake. It ticked over for me when I went for a scan a month or so after surgery and I had to tell the doctor performing it “I have endometriosis”. I realised it was the first time I’d said it out loud. From then on it was cemented for me, no more doubt, no more questioning – I had endo.
I accepted my new fate as someone with endometriosis and accepted that I didn’t have to put up with being in pain all the time. At the moment that means chasing down as many options for pain relief as possible, taking a multi-disciplinary approach rather than just trying to shovel meds down my throat and spend the day spaced out (it’s not as fun as you might think). I may have gotten over it, but when I look at the way society treats women’s pain – obvious from my friend’s rant on said subject – I see that some people are locked in that way of thinking and so we get treated like crap. It’s hard to understand sometimes because those of us with endo have our own limits and concerns, and more often than not, they are very different to regular people. For example the kind of pain many of us, and I cannot speak for everyone, experience on a daily basis is the kind of pain that would make anyone else run screaming for emergency. It’s pain that when I first felt it made every primal, protective urge in my brain scream – death is imminent, it told me, something is very wrong. However over time I stopped being afraid when I felt that pain, because I knew I wasn’t dying and I didn’t want to go to emergency. I knew exactly what the pain was and that I was in for a rough time, but eventually there would be some relief. I say this because many people have questioned the extent of my pain by the measure that it’s never sent me to the emergency room. So the situation I describe next is something I want you to pay attention to, it’s the entire problem. Even when I am in excruciating pain, the thought of going to the hospital only makes me feel worse and this is why…
Picture this: a relatively healthy twenty-something female enters the emergency department in tremendous pain. She’s taken the painkillers she has, which could range from Naproxen to Endone, and they’ve done nothing to relieve her pain. She’s scared, shaky, and her vitals are all up (increased pulse, BP high, respirations increased). If it’s a good day, she’s triaged and gets in to see someone fairly quickly…if it’s not, she has to wait a long time, all the while still in pain. One of two situations happen when she gets in to see a doctor: one, she explains that she has endometriosis and the medications she’s taken and that they haven’t worked, can she get something stronger just to take the edge off and help relieve her suffering. In response the doctor thinks: drug seeker. Because when you have endo you “speak medication” better than most nurses (I should know, I’m training to be one), which many medical professionals assume is an addict speaking. (I’ve told you that so many milligrams of pethidine/fentanyl/morphine will help because I thought that would be helpful, not because I’m trying to score a fix…)
The second situation that may happen is that she lets the situation unfold naturally and the doctor tries to get the bottom of the pain. Several torturous examinations later, the woman is told that there’s nothing visibly wrong and then it starts…the “psych” questions. The doctor assumes this pain is a manifestation of stress, or being emotional. In talking to women with endometriosis, I’ve heard these two situations over and over with slight variations. It seems that far too often we have to fight to even be heard, let alone treated. What’s worse is that so many of the women that turn up to emergency have a diagnosis, we have proof of a legitimate medical condition and yet, still these reactions. So why does this happen? Why do so many intelligent, highly trained medical professionals see pain and instead of pathology they see psychopathology? I read a post last year where a husband recounted his wife’s trip to the emergency room for ovarian torsion, an extremely painful occurrence that can lead to tissue death (http://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/ ). In this article he refers to Leslie Jamison’s essay on the ways in which female suffering is “minimised, mocked, or coaxed into silence”. The essay refers to specific studies, one of which showed that women wait longer for analgesics for acute abdominal pain than men (US sample), highlighting the innate sexism in healthcare and more specifically emergency.
Is it engrained notions of sexism that still exist in society? The idea that women cry and it’s no big deal? If so one would think that female staff would be more empathetic and effective at advocating for patients. Yet feedback suggests this is not necessarily the case. Perhaps then those same staff have internalised those patriarchal ideologies from a lifetime of being told the same thing we’ve all been told: it’s just your lot in life. Whatever the reason, it’s an important factor in why many of us with endo don’t seek medical attention until we are in an amount of pain that is beyond anything we’ve ever felt. The fear that after everything we’ve endured there will be further doubted and judged is a particularly powerful deterrent. It shouldn’t be this way, the profession is supposed to help and us protect us. Yet for many mistreatment has resulted in further disempowerment, and to disempower someone who has already been doubted so many times only further damages their relationship with the medical profession. As a future nurse, the last thing I want is for my most vulnerable patients not to trust me to take only the best care of them. When there are so many medical professionals who are incredibly helpful and supportive of endometriosis patients, they are done a disservice by every other doctor, nurse, or allied health worker who treats endometriosis patients like head cases. This is especially true for emergency staff, who are the frontline of health care and whose care can make significant differences in patient treatment outcomes.
If you’re someone who works in the medical field, my advice is expand your knowledge of pain if you worry after reading this that it is deficient. Understand the way chronic pain operates, and the fact that normal is a sliding scale in patients with pre-exisiting conditions. In the same way that you adjust “normal” when taking vitals for a patient with hypertension, you must adjust your pain scale for someone with chronic pain. When I say 5-7/10 that’s a normal day for me. If I say 10/10, you should find me a GYN quickly because something is probably wrong. It’s an adjustment in thinking, in how you see your patients based on a history. It’s also a matter of reflective practice, something I am encouraged to do as a student practitioner often, but it’s not just for students. Taking a moment to question if you’ve done everything you can to relieve pain and more importantly relieve suffering, for they are two very different things, can make a world of difference.
Thank you for reading this series and being a part of Endometriosis Awareness Month. Below I’ve provided other online articles and blogs that people have written this month to raise awareness. Enjoy!
Women aren’t responsible for endometriosis, nor should they be expected to cure themselves – The Conversation, https://theconversation.com/women-arent-responsible-for-endometriosis-nor-should-they-be-expected-to-cure-themselves-24223
What Endometriosis Has Cost Me – Elle, http://www.elle.com/life-love/a34959/what-endometriosis-cost-me/
For The (Non) Endo Girls : What Does Endometriosis Pain Feel Like? – Yellow Paper Dress, http://yellowpaperdress.blogspot.com.au/2013/08/for-non-endo-girls-what-does.html?m=1
‘Pain’ and ‘uncertainty’: A young woman shares her struggle with endometriosis – Today Health and Wellness, http://www.today.com/health/pain-uncertainty-young-woman-shares-her-struggle-endometriosis-t77606?cid=sm_fbn