The 1 in 10 Sisterhood

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March is Endometriosis Awareness month. 1 in 10 Australian women have endometriosis, a condition where tissue similar to the lining of the uterus is found outside the uterus – for example on the reproductive organs, abdominal organs, throughout the peritoneal cavity and even on the diaphragm and thoracic cavity. The disease can effect girls and women throughout the lifespan and causes a myriad of symptoms which may include severe pelvic pain, infertility, pain with going to the toilet, pain with sex, fatigue, gastrointestinal symptoms, and heavy menstruation. The disease effects every individual differently and the average delay from symptom onset to diagnosis is around 7 years (range is anywhere from 5-11 years on average depending on which study one consults). 

I’ve known since I was diagnosed with endometriosis that the disease affects 1 in 10 women, but I don’t think I fully comprehended how many women that was until recently. Looking at support pages and seeing how many women shared their stories in these spaces, I came to realise that my story was similar to many others and so different to even more – and that is why every story is important. Being a student nurse, the pool of women I talk to has expanded in the past year and in this time I have become more and more aware of just how many women suffer with endometriosis. Four of my preceptors have had endometriosis – possibly this number is higher, I only found out when I was having a bad enough day with my pain that I had to tell my supervising RN, and they understood perfectly because they had experienced the same pain. In my most recent placement I was chatting with one of the grad nurses over lunch and found out that we not only shared the same disease but the same specialist. We spent a good deal of time gushing over how lucky we were to be under this doctor’s care, understandably – he’s amazing. But what struck me was how she told me, she used the phrase “Me too sister, I have endo too”. Now we call each other “sister” a lot in nursing, it’s the old-fashioned way to address a nurse and in many environments we still use it either as an inside joke (we call the male nurses sister too, and grin mischievously as we do so) or as way of expressing our gratitude. But it’s a term rarely heard among the grad nurses outside the floor. This was a different sister…it was the acknowledgement that having endometriosis gives you a vast universe of endo sisters across the world to share stories with, share experiences, and feel a little less alone.

In just 12 months endometriosis awareness has come a long way. Celebrities such as Daisy Ridley and Lena Dunham have shared their stories and encouraged young women to be assertive and push for care when they feel they are being ignored or not taken seriously. Mainstream media outlets such as The Guardian and Mamamia have featured a variety of endometriosis stories from women’s endo stories to specialists answering non-sufferers questions about the disease to encourage greater support and understanding. I’m starting to feel that more people understand the burden of having this condition and that when I tell people I have endometriosis they do actually know what it is or at the very least have heard of it. Women like Sylvia Freedman, co-founder of EndoActive, have led the way in promoting education about endo. Endometriosis Australia and QENDO (QLD Association) have similar roles, especially in regards to keeping those of us with endo up to date with research about our condition and the treatments available. QENDO held a fantastic event at the beginning of March with the legendary Dr Susan Evans (among others). Susan is a passionate physician who’s book on pelvic pain and endometriosis was one of the first to take a patient-centred and woman-centred approach that empowered women to be their own advocate. This approach is becoming more recognised as patient care in general becomes more “patient-centred”, but women seeking care for suspected endometriosis frequently face barriers to effective care.

Earlier this year I completed a literature review as part of a research course and I focused my question around the “patient-centredness” of endo care. A groundbreaking European study was conducted where researchers developed a tool to quantitatively measure this, using input from specialists, researchers, and a focus group of patients. The study was the first of it’s kind and extremely exciting as both a patient and a health professional. The other studies I included were less optimistic. In fact they were an indictment upon the medical profession. While the studies provided a glimmer of hope that over time GPs have gotten better at treating women with pelvic pain, they also showed that many women had been treated appallingly. At best some women had been misdiagnosed and told that going on the Pill would solve all their problems, at worse they were accused of drug seeking or told that their problems were psychological. In between there were the usual “suck it up” or “every woman experiences period pain” comments and even the suggestion that pregnancy would solve their issues. These studies were conducted in the last ten years, and it is unacceptable that women still face this kind of treatment and discrimination. It was a very different assignment to the one I did in my undergraduate degree, before I was diagnosed, which centred around how women became empowered by online support communities. Here my research was hopeful, inspiring, and spoke to the sisterhood that’s there to support you once diagnosed.

My hope is for a a profession that is well educated and supportive of women presenting with endometriosis and/or chronic pelvic pain. I hope that as a nurse I can be part of that. It is sometimes uncomfortable as a health care professional to read such an indictment of one’s profession, but it’s one we have to look at and then ask ourselves what we can do to better serve our patients. Every day on the wards or in operating theatres or in community nursing I remember that I myself have been the patient and I was lucky enough to receive the best care I could imagine. It is my duty to provide the same care to all of my patients. Women with endometriosis deserve this care, the same as all patients. It is important that we continue share our stories in an effort to educate as many people as we can. The sisterhood has done so well and we need to keep this effort up. EndoMarch 2018 should see even more progress!

Once again, in celebration of EndoMarch 2017, I encourage you to educate yourself. If you’re already familiar with the condition, up your knowledge…talk to someone with the disease and find out how you can support them. Make a resolution to never use the phrase “Have you tried x?”. We hate that…unless you’re a doctor. And even then, specialist preferred. Keep the conversation going!

 

“Halfway to Heaven, and Just a Mile Outta Hell”: Bruce Springsteen in Brisbane

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Technology has ruined us Bruce Buds. The ability to watch live shows on your own screens from across the world due to the miracles of Periscope and videos on fan pages has given us a glimpse into the intimate relationship between Bruce and his chosen crowd. We see it as it unfurls and, honestly, we get a bit jealous. One might think that makes us less excited for our own live events….UNTRUE.  The excitement was palpable at the Brisbane Entertainment Centre, even in the heights of B reserve where I sat the air was alive. This only reached its climax when many spotted the elegantly dressed strings behind the stage – surely meaning an opening of New York City Serenade.

We weren’t disappointed, Bruce opened with a beautiful NYCS – the stage lit up to reveal The Professor himself with those distinctive opening notes. I’ve seen the song played before, but I feel I will never tire of its enchanting beauty. It was slower, more intense this time around. Though we predicted NYCS, no one could have predicted the stunning transition into Lucky Town – a live rarity. It was the first sign that this setlist would be anything but ordinary (no Springsteen show ever is). The rendition was powerful and energetic in such a way that I and everyone that knew the words screamed them with Bruce. Next up was Bruce’s Valentine’s Day Special. Descending into the pit to pluck signs while we waited with bated breath to see which one he would choose. I saw Meet Me in the City and Back in Your Arms among the plucked, but he held up Janey Don’t You Lose Heart from Tracks. This was followed by a rocking Rendezvous and wonderfully energetic Be True, also from Tracks. For the more casual Springsteen fan (we love y’all!) they would have been an unfamiliar experience, but no doubt an educational one. Bruce was clearly having a great time, dancing, making goofy faces and shaking it with Jake during the Be True sax solo. To make it even more perfect he played a beautiful Back In Your Arms, complete with five whole minutes of “Bruce Talk” (see my twitter feed for the video). It was raw passion and emotion combined with classic Bruce humour – including advice for when “you done fucked up” with your woman. It swung between hilarious and deeply emotional where one could clearly see Bruce was missing his own woman, with Ms Patti absent for the present tour. To make sure all hope was not lost for those of us who had been broken-hearted, Bruce played us Better Days.

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At this point I felt like the set list was made for me, for my day. I had just learned that I gained an elective placement in my chosen area and was on a high, I used the phrase “Bruce concert days are lucky days”. So when Lucky Town started, I felt a little blessed. Time then ceased to exist as Bruce launched into three River Classics: The Ties That Bind, Out in the Street, and Hungry Heart. On Hungry Heart…any true Bruce devotee knows that you have one job during Hungry Heart: show Bruce how epically you can sing that first verse. If you do well, he bestows upon you the honour of singing the first verse again. Brisbane scored top marks. While these songs can be considered the bread and butter of a Springsteen show, last night Bruce approached them with the same energy and finesse of any of his epic anthems. The same can be said of his rendition of Wrecking Ball – fierce, loud, and full of righteous anger. The surprises kept coming with Leap of Faith, of the Lucky Town album which never would have even been on my Bruce wish list and yet upon hearing I realised I had no idea what I was missing. The pit turned blue for an impassioned “The River” performance with Bruce on harmonica.

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The next seven songs were an unbelievable high of energy and wonder. The house was well and truely brought down by Youngstown and the incomparable Nils Lofgren and his guitar solo. Also, can we take a moment to talk about the mighty Max Weinberg smashing it with fervour and stamina all damn night? Youngstown, Rendezvous and Wrecking Ball are just f few of his efforts worth mentioning. Then he introduced Candy’s Room with that crisp, clean roll and all my dreams came true. It was hard to stay seated as Bruce and the crowd roared “baby if you wanna be wild, you got a lot to learn”. Another wish from my Bruce list. From here the band went into a thrilling She’s The One, and beautiful Because the Night. I challenge you not to fist pump and damn near cry during Because the Night. The Rising, Badlands, and Rosalita were met with passionate crowd responses. My little cousin attended her first show last night, and when asked she excitedly told me that she “did the whoah-whoahs” in Badlands, a Springsteen rite of passage. I have done it four times now, and it never fails to make me insanely happy. I never tire of the way it manages to connect every person in the building in inescapable joy.

The encore started with the lights low and Bruce telling us he had a special treat for Brisbane. Charlie played the opening notes of Secret Garden and I couldn’t believe my luck. I never imagined I’d get Candy’s Room and Secret Garden in the same show. While I had hoped maybe for some Jungleland or Backstreets, I could not have been more thrilled with the quiet magic of Secret Garden. I could feel myself shedding a tear, because it was everything I ever dreamed it could be. The rest of the night was the traditional Springsteen encore with an amazing Born to Run, Dancing in the Dark, and Tenth Avenue Freeze Out. Asses were out of seats for fun in Shout with the band intros and Bruce’s new command to every departing guest to go home, wake the neighbours “in their pyjamies” and tell them, that we just saw the heart stoppin, pants droppin, Earth shockin, hard rockin, booty shakin, earthquakin, love-makin, Viagra-takin, history makin, LEGENDARY: E STREET BAND.

By the end of Bobby Jean, everyone was exhausted in the best possible way. My father was speechless, and my little cousin had the glow of a newly inducted Springsteen die hard. I tweeted, a hard task considering how concise one has to be, to the other #BruceBuds: “I am speechless. I have seen Bruce Springsteen channel God himself in an epic, energetic show with surprise after surprise”. It was without a doubt one of the best set lists I ever had the joy of experiencing. After seeing a show, you’ll never doubt that experiences are more soul-enriching than “things”, because Bruce Springsteen takes you to another place and that place stays with you forever. The come down from such a high can be hard…Hannah from “Burgers and Bruce” has been describing it from across the world since she left the Australian tour and even this morning I’m beginning to get that feeling.

But lucky for me, Bruce will rock again Thursday night…and I’ve got two tickets. Happy Valentine’s Day Bruce lovers, we have been loved.

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what I do for thirty seven dollars and five cents

General Practice is worth investing in people. Take it from a hospital-based student nurse who sees the people that could have been kept off my ward if they had been a more frequent visitor to their GP. Worth a read! It was a GP that convinced me my awful pelvic pain could be endometriosis and could be helped.

that lady doctor

The building contractor chatted pleasantly while I checked his blood pressure, waist circumference, recent cholesterol levels, fasting glucose and urine protein. We discussed screening for bowel cancer with “the poo test” versus colonoscopy, with reference to his family history. We talked in detail about prostate cancer testing and I offered to provide him with written information as we were out of time. As I signed his script for the blood pressure medication he winked at me.

“That was easy money for you, wasn’t it?” he said as he walked out.

Thirty-seven dollars and five cents is the value this government places on up to twenty minutes of my time. This figure, the amount a practice receives from Medicare for a standard consultation, has not changed in four years, and under the current arrangement, will not change for another three. I myself receive sixty five percent of that. But are the pennies…

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July Good Causes: Heart Health is More Important Than Ever

While it has been many years since the Heart Foundation released it’s infamous tick of approval to help us all make healthier choices, their work remains more needed than ever before in an era of office jobs, burgeoning technology and more fast food options than ever before. When I scroll through my newsfeed on Facebook or Instagram one of the most common things I see are posts from people who seem to be completely sorted on this whole healthy lifestyle gig. They’re slaying it in spin class, running marathons, lifting crazy weights, and cooking up some very green recipes. Wellness has become a trend, and one that’s worth endorsing because when you get past coconut oil and quinoa (and fancy printed gym tights that would make me look like an elephant in a party dress) eating well and being physically active is a fundamentally positive thing, especially when combined with body acceptance and the ability to be healthy no matter what you look like. Despite this social media smattering that would seem to indicate the country is in pretty good shape, health statistics paint a different picture.

The Australian Institute of Health and Welfare (AIHW) identifies chronic diseases, such as cardiovascular disease and diabetes, as the leading cause of the fatal burden of disease in Australia. Cardiovascular disease is one of the most common, with 1 in 5 Australians afflicted. Additionally, 1 in 19 Australians has diabetes mellitus which is major contributor to the development of heart disease (as well as chronic kidney disease and peripheral vascular disease). In my first semester of nursing school I confronted these statistics head on by reading in detail about the pathophysiology of these diseases and their consequences, both physical and social, as well as caring for patients with these conditions. One of the most confronting things as a young student nurse is to see the burden of disease before your very eyes, the reality of things often considered only in abstract form. During this semester I certainly started to make an effort to do more healthy things every day, whether it was saying no to chocolate (hard for long suffering endometriosis girls!) or dragging my ass to the gym at 5am when I would rather be sleeping in with my cats.

The thing is, a lot of these chronic diseases are extremely preventable through positive lifestyle choices such as good nutrition and adequate physical activity. That’s where good sorts like The Heart Foundation come in. For years they’ve been seeking to use evidence-based practice to improve the heart health and access to equal healthcare to reduce the number of preventable deaths directly linked to cardiovascular disease. They do this by fundraising to help fund research into heart disease, providing guidelines for health professionals regarding heart health, consumer and patient education, and advocating to government and industry. They rely greatly on public donations to do this work and so this month I am fundraising with my FitBit. FitForGood is running from July 11-25th and challenges Australians to collectively take 2 billion steps over these dates to raise money for the Heart Foundation. If this goal is reached, $100,000 will be donated. To raise further funds and reach the $500k goal, individual participants can encourage family and friends to donate to support their step goals.

So I have set my daily goal for 10,000 steps, but hope that I can absolutely smash that and go even higher. I’m committed not only to my fundraising, but to bettering my own health. Recently women with endometriosis were given another consideration to add to our already burgeoning list of health concerns. A study has has linked endometriosis to an increased risk of heart disease, especially earlier than other women. While it’s not clear as yet whether it’s due to the ways in which we may treat our disease (e.g. hysterectomy and oophorectomy which reduces circulating oestrogen, oestrogen which is usually protective for bone and heart function), or a risk associated with having the disease itself (i.e due to inflammation). Either way, it’s a scary thought, and one that means I am paying more attention to my risk by reducing it in every way I can. Using my fitness tracker as motivation to increase my activity every day. The best thing I’ve found so far about student nursing is that an eight hour shift sends my step count sky high. After a shift in an aged care facility this past semester, my step count stood at close to 20,000 steps for the day. Nursing is the greatest work out of all. The best thing to be as a nurse is a role model to patients, and I hope I can be with this challenge. Step goals are crazy motivators, so come July 25th I’m certain I won’t be able to stop. Come join me! Even if you don’t have your own FitBit, it can be your own personal goal to just step more. And you can donate to my Everyday Hero page here: https://fitforgood.everydayhero.com/au/dannielle-for-fitforgood

I would absolutely encourage you to make your own as well. Step your way to better health and donate some dollars to a worthy cause.

Here are some helpful links:

http://heartfoundation.org.au/active-living/get-active/fit-for-good

http://www.heartfoundation.org.au/about-us/what-we-do

Cinnamon, a cheaper way to help reduce pain

*Adds cinnamon to everything and carries it around in little packs like a drug* – Me, from now on 😀

The Endo Lifestyle

Cinnamon is another delicious spice that has many fantastic benefits. It is obtained from the inner bark of several trees from the genusCinnamomum. Everyone surely must have cinnamon in their cupboards at home, now there is actually a good reason to use it every day!

Here’s why:

  • Cinnamon is thought to be able to assist with heavy menstrual bleeding and circulation. It contains a natural compound that naturally increases progesterone.
  • Cinnamon is a powerful antioxidant that not only helps to strengthen the immune system in fighting against forming of endometrial implants and adhesion, virus and bacteria invasion, it also helps to reduce blood flow during menstruation.
  • Cinnamon helps to improve the digestive absorption, which is essential for women with endometriosis because most of us are found to have low levels of vital vitamins and minerals during menstrual cycle due to low levels of stomach acid.
  • Cinnamon also has anti-inflammatory…

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Somebody’s Going to Emergency… (Endo Awareness Pt 3)

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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

What Kind of Day Has It Been? (Endo Awareness Part 2)

Then you’ve seen me, I come and stand at every door

Then you’ve seen me, I always leave with less than I had before
Then you’ve seen me, bet I can make you smile when the blood, it hits the floor
Tell me, friend, can you ask for anything more?
Tell me can you ask for anything more? – (The Wrestler, Bruce Springsteen) 

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(Photo): Me with my Dad, sporting some fab yellow (endo awareness coloured, obvs) pants. I love looking back at me then because she’s not “endo me” yet, she doesn’t know the things I know and she’s just happy with her yellow pants and her front yard, and the cat that never liked me. There’s a lot of times I wish I could be her again. Talking about myself in the third person is odd so I’m gonna stop now. 

Welcome to the second in my three part series for endometriosis awareness month. The title of this post comes from Aaron Sorkin, creator of The West Wing and The Newsroom, both of which have had an episode with this title. It’s also a question many of us with endo constantly ask ourselves, and sometimes wish people would ask us. So I’m asking. This week I’m bringing you the perspectives of many different women living with endometriosis. These awesome, brave, inspiring women generously submitted comments regarding what they wish people knew about their endometriosis. People really believe some horrifying things about endometriosis and period pain. There’s a lot of things people don’t understand about what we go through every day, and part of awareness month is educating people. So this is our chance! Read this post with an open mind and I promise you’ll learn something valuable, if only so that you understand the basic concept that not all period pain is made equal. Pain that interferes with your life is not normal, a woman’s lot, or a first world problem, it’s our lives and just having people acknowledge that can make a tremendous difference.

Something that’s struck me since being diagnosed is the difference in the way people in the hospital treat me versus laypeople. When I go for a scan or to see my gynaecologist people are amazing. My specialist tells me that he takes my pain seriously and does everything he can to help me find some relief. Nurses who take my medical history before a scan will say things like: “I’m so sorry you have to go through this at such a young age”, or “well, that just sucks doesn’t it? Is there anything I can do?”. The acknowledgement that my life can be incredibly trying at times, despite all the great things in it, is comforting and makes me feel like it’s okay to not always be fine. It’s so different than when I explain it to people outside of that setting. While some people are awesome and honestly want to know about endo and don’t make assumptions, some people say really thoughtless things. Like the guy I apologised to for zoning out because I was in pain and upon explained when he asked was told: “Oh gosh, yes, I know what you mean..I had a really big lunch.” Um, no mate. It’s simple things that can make a difference to my day…someone just letting me feel whatever it is I’m feeling and saying, “I’m right here if you need anything”; having a pain free or mostly pain free day; being able to power through pain and get things done anyway, so that you feel unbreakable. I am additionally incredibly privileged to have access to a doctor who is the freaking best at what he does and I never had to endure doctors telling me that my pain was fictitious or psychological (other people took care of that one for me). Make no mistake, many other women are not this lucky. Equality of access to health care is not yet a reality in this country, and while I cannot speak for my American endo sisters they tell me what a mess their health system is all the time. Unfortunately not everyone gets the best they can find, or can afford what they so desperately need, and some people cannot even get basic access to medical services because of rurality. This is part of the reason I wanted to bring you the perspectives of other women, because many have fought harder and longer than I have to end up in the same place and it’s important their stories are heard. One of the reasons I’m a student nurse is because I want to be actively part of the provision of better care and services for women with endometriosis, to right some wrongs. Building on that desire, I also want to make sure no one ever has to feel as though their illness doesn’t matter, no matter what it is or who they are. There are many invisible illnesses out there, and even more invisible people, and I want someone to see them. I see you.

Thank you to all the lovely women (and one lovely husband!) who took the time to contribute to this post. I’ll go first.

I wish people knew…that not all endometriosis is the same, so not everyone’s pain is the same. I may have mild endometriosis but I often have a lot of pain. Someone with extensive and severe endometriosis may have crippling pain, or they could have none. The symptoms are as diverse as the women whom this disease affects. Everyone has their own stories.

I also wish people knew that just because I didn’t talk to anyone about my pain for years, that doesn’t mean it wasn’t there. You saw what I wanted you to see, and I didn’t want anyone to see what I perceived to be my greatest weakness. I’m not re-writing my history with this pain, I’m simply seeing it through a different lens, one that makes me realise that I was not okay even though I said I was. Pain can be easily forgotten, and just as easily it returns to prove to you how foolish you were to think it was “nothing”.

What Other Women Wish People Knew…

(All quotes appear as submitted, with modification made only for spelling errors/clarity of expression/typos)

That I am not lazy or hypochondriac. I do have a legitimate reason to be sick all the time…. 

I wish they knew how bad the pain is, just because we don’t have visible symptoms and we are able to hide our pain to get through the day that doesn’t mean you can write it off as minor or pms or we just made it up. It’s real and it hurts. 

I wish people understood that it really can be hellish. And that I have done everything I possibly can to be as normal as possible, but my normal is not the same as it used to be.

I wish people would know it’s more than just painful periods. Once endometriosis was found, even my doctors treated me differently-as if this isn’t painful, life-altering….instead they just think you are a drug seeking faker who can’t handle her period.

I wish people knew it can flare up ANY TIME. Not just during a specific time of the month.so please don’t give me the look when i say I am in pain.

Just how truly horrific the pain is. I literally feel like my organs are wrapped in red-hot barbed wire. Yet, I endure by loading up on 20 ibuprofen in a 24 hour period just to be able to fake my way through the day.

I wish people knew that when I hear someone close to me is pregnant I am both overjoyed and heartbroken, and that I feel so guilty for being heartbroken because I’m so scared my husband and I will never have children. 

I wish people knew that I don’t go to the ER [emergency] even when I’m in excruciating pain and am really scared because I know that half the time they’ll think I’m just a drug seeker. It hurts me that people don’t even believe my pain. It’s so horrible that I want to scream at people: how can it be in head?? It’s even more horrible when those people are doctors and are supposed to take care of you. 

That for me it’s not just pain. I get dizzy, I throw up, and have migraines. I never know when it’s going to strike and most of the time I have to pull myself together and carry on anyway. Normal for me will never be normal for other people. 

That sometimes I just want to stay in bed all day and give up trying to be normal. Sometimes I’ve wished myself dead. Then the next week I’ll be fine and ready to fight again, but that dark place is always there and I hate that endo made it. I want to cry and scream sometimes with frustration that I am freaking cursed with this. Why me? What did I do? 

From the husband of a sufferer: Just how much this disease not only affects my wife, but how much it effects me, her family, friends, social life, work. Every vacation we’ve ever taken, she’s gotten sick. We’ve been to the hospital too many times to count. Surgery…staying with her in the hospital. Watching her suffer and not being able to take that pain away.

Wish that people knew that there is such a wide range of “normal”. Some ladies are able to deal with this disease much easier than others. Some ladies are completely disabled by this disease. And all of that is considered “normal”.

That it is a chronic disease that can be debilitating at any time. The amount of times I’ve said “I have a disease called endometriosis” and people reply with “oh don’t say that, that makes it sound really awful. What is it?” Aaaaaaaaarrrrrghhhhhh!!!
That I’m not skiving with period pain.
That asking “are you better now because you’ve been ill the last few times I’ve seen you” doesn’t actually help, and just makes me think I have to say I’m fine, because it’s too draining for YOU that I feel crap a lot!!
That it affects every part of your life, not just your periods. My sleep, what I eat, when I can book a holiday or even a night out, how I schedule my work load so I don’t leave important things to a “bad” week, my sex life, my relationships, my social life, my mental health, financially (all the prescriptions, over the counter medicines, heat pads etc that we have to buy to try anything that might help).

That while I may look ok on the inside I’m in excruciating pain. Its crippling and people cannot understand if they don’t have it.

I wish people knew how deeply we often experience feelings of isolation because of this disease. I don’t know anyone outside of this online community [where we posted these comments] that suffers with this disease and that is a very, very lonely feeling.

In keeping with our Sorkin theme, I wanted to include a vid link at the end here from the final episode of The Newsroom, titled “What Kind of Day Has It Been”, which includes Will singing “That’s How I Got to Memphis”. What always struck me about this was how Charlie explained it to Will, saying that Memphis is a stand in for wherever you are. When you say “that’s how I got to Memphis”, you’re really saying “that’s how I got here”. That resonates with me because then I have a hell of a getting to Memphis story, and so do all the women who included their perspectives in this post. Some times the best thing any of us can do is look back and figure out how we got to where we are, because a lot of time it makes you realise how much you’ve achieved and how hard you’ve fought.

High school, painkillers, a brush with crazy, surgery and two university degrees – that’s how I got to Memphis.

The Newsroom – That’s How I Got to Memphis [HD] https://www.youtube.com/watch?v=kp04NqmwWn4

Endometriosis Awareness Month Part 1: In the Beginning…

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This ain’t no party, this ain’t no disco, this ain’t no foolin’ around… (Life During Wartime, Talking Heads) 

March is Endometriosis Awareness month and because this is the first March that I have officially had endometriosis, I wanted to do something special. Over the next few weeks I will be bring you three blog entries dedicated to awareness. This is the first, and it starts with me. I’ve talked about my journey in bits and pieces as it’s relevant to my blog topics but this is the whole damn thing. I would read stories like this on blogs over and over before I was diagnosed, looking for the similarities and for signs that I wasn’t fooling myself…that this was the reason for my pain and I should believe what my doctor was telling me.

Do you remember being fifteen? What were you like? What did you want most in the world? Possibly it was something entirely superficial and materialistic, like a car or an iPhone; maybe you just wanted to win your netball competition or win age champion at the school swimming carnival. I wanted things like this, these simple and sometimes selfish wishes that we all have at that age. I didn’t know that there was something I secretly wanted even more, I didn’t know that what I really wanted was to never have my period again. “What’s your problem?” people would quip when they saw my face during those seven days. “Cheer up why don’t you?”. It wasn’t for a lack of trying. I hated my period, because when I was fifteen all of this was just beginning. I first started to notice that my period wasn’t just annoying, it hurt, sometimes really badly. It was messy, and it made me exhausted, and being exhausted made me not so happy shiny. I looked at everyone else and decided that I must have been weak or have a really low pain threshold. Everyone else seemed fine and I began to wonder if half of those girls even got periods. I thought every other girl felt the same thing I did, because people got period pain…that wasn’t news. “Take a panadol,” one friend said. “No, panadol is useless, you need ibuprofen because that’s made to help cramps,” another one told me. I thought I’d try it, my mother had bought me some period pain specific tablets a few months back and I hadn’t managed to take any as of yet. I asked the nurse at school when I should take them, without mentioning how bad the pain was, and she told me before the cramps started…otherwise just take it as soon as one started feeling the pain. Perhaps if I had told her, if she had known just how much pain I was in, she would have said: “forget the tablets, go to a doctor”. But she didn’t know, and so I did what she said.I am horrible at swallowing tablets, I gag a lot and back then I hadn’t even mastered the getting it down my throat part because reflex always stopped me.

One day I woke up in fairly serious pain and so I managed to get my two ibuprofen down and then…nothing. It didn’t do anything.  I remember sitting outside form class, I was early, and my teacher came up to open the room. I was staring into the distance trying to focus on anything but the pain I was feeling. Compared to what I would later experience it was amateur, but at the time it was horrible. My form teacher, also my biology teacher, looked at me and jokingly waved his hand in front of my eyes…”you okay?”. I asked him how long an ibuprofen took to work and he replied about fifteen to thirty minutes (at least he was actually a scientist). “Damn,” I whispered. He repeated his earlier question, more seriously this time, and I quietly told him that I was just having some pain but that I was okay. Clearly seeing that I didn’t want to talk about it, he let it go, but I noticed in biology class over the next few days occasionally he would look in my direction as though we were repeating that conversation over and over. But my answer was always the same, my eyes said: I’m okay. A little while later, end of term, we had what could be generously termed a bludge lesson. We basically sat in the library on the last day of term and messed around on computers, or talked to friends. My friends were sitting on the floor because it was cold and that’s where the sun was. They played cards and I watched, leaning against the glass window, in pain yet again. My teacher stood above me and asked, “what’s going on?”. I mumbled something about having my period, worried that anyone would hear me and even more embarrassed to be talking about it to my male teacher. But he was one of those teachers, the ones that everybody loves because they actually care about their students and ask you how you are and actually mean it. Usually they don’t even know how great they are. He realised this wasn’t the first time this had happened in his classroom and he asked me about it. He told me about how a flatmate of his had endometriosis and that she was often like this, in a lot of pain and finding it hard to keep a straight face, and that he thought I should tell someone about my pain while it was still relatively mild in case I had the same thing. I thought the idea that I had endometriosis was stupid because I knew exactly what it was, only I believed the limited info I had on it. Girls with endo weren’t like me, they stayed home from school bedridden with pain, my pain wasn’t like that was it? No, I was just a wuss who couldn’t deal and I needed to suck it up.

I kept thinking this for a very long time and yet it would not be the last time that my teacher would see me like that, in fact he saw worse. I didn’t tell anyone else about my pain, because I thought that it was normal, and that you didn’t talk about that stuff anyway. At sixteen, almost seventeen, I found myself in my GP’s office chatting about the progress I had made with some of the issues I’d had psychologically during year 11. I was doing okay despite everything, and I stressed less about my work. When we were done she asked me if she could help with anything else. I don’t know what made me start telling her about my period, maybe it was the fact that she was a doctor and it was okay to talk about it with her, maybe it was the fact that I was starting to worry just a little about my pain. I wanted her to tell me I had nothing to worry about, that it was perfectly fine. I knew girls my age controlled the annoyances of periods with the Pill though, so maybe that would help me.  When I told her about how much blood there was and how much pain, she wrote it all down and told me she would give me the Pill if I wanted it. I asked if I should be worried and while she told me not to stress about it, I wasn’t told it was perfectly normal.

Nearly two years later I was sitting back in my GP’s office. In that time I had managed to finish high school, get into a combined Science/Arts degree at university and just as quickly dropped science when I realised my heart belonged to literature and criminology more than biomedicine and ecology. I was still taking physiology though, because part of me still longed to learn it all, to understand everything I could about the body and how it managed to screw so many things up in something so intricately designed. Despite the Pill my pain was worse and I began to think about it more and more. I was still 90 percent convinced that it was normal but maybe I just got a hit a little harder than most. I’d been back to my GP many times for new scripts and when she asked if the pain was better I’d say no, but I came back so infrequently that she probably didn’t think much of it. It was during this instance in early 2014 that she had decided that all of this wasn’t okay and that maybe I should worry and she found it odd that I wasn’t knocking on her door every month to complain. I didn’t really see a point because how many times could I repeat that it hurt? She realised how long it had been since she started me on the Pill and that I hadn’t improved. I remember her looking at her computer in disbelief and asked me to start from the beginning. What did this feel like like? Um, bad…I guess. Did I take any medication for it? No, paracetamol and ibuprofen don’t do anything for me so I don’t take it. When she suggested that a referral to a gynaecologist was in order I thought it was a bit premature, but a part of me was glad. There was a part of me that would occasionally whisper in the back of my mind: what if it is something? What if you don’t have to be in so much pain? It usually felt more pressing when I lay on my bed taking deep breaths because the pain in my lower abdomen was so bad I thought I might faint. Or when that same teacher, who by now was actually a pretty good friend, would tell me to keep on it and not let anyone tell me that the pain wasn’t real or all in my head. It was that whisper that made me call the doctor my GP had referred me to and make an appointment and then look him up the night before I went to see him. When I realised he was an endometriosis specialist I was worried, not at the thought that I might have it, but at the thought that I would waste his time because my pain wasn’t anything like that.

I’ve sat in my gynaecologist’s waiting room so many times now that I’ve memorised most of it’s interior. My first time there I wasn’t entirely sure what I was doing, but I tried to convince myself that everything would be fine and that maybe, just maybe, I was one of those girls with endometriosis and I just couldn’t see it. I had told myself for so long that it was okay, and it was normal, that I wouldn’t let myself believe anything else. I liked my doctor straight away, he was nice and wasn’t afraid to lighten the mood with a joke or two. What I liked most was that I never felt as though I had to work at convincing him to take my pain seriously, he convinced me. It was something about the way he asked the questions that made me see my pain for what it was. It was horrible, and it hurt, and the worst thing was that after every period I would forget how much it hurt and so assume it wasn’t bad; then it would come back and it started to come even when I didn’t get my period. He asked me if I took a lot of time off school or work, if I felt like lying in bed all day. I told him I never missed school, or uni, but that was just because I was afraid to fall behind. What he asked me next was what did it for me, and seemingly for him too. Writing down what I had just said, he looked at me and asked gently, “so you’ve never missed school then…but did you want to?”. I took a moment to think about all the times I sat in a lecture or tutorial in pain, all the days I went to school but wished I could just stay home, and the work sessions I’d forced myself to go to. I was almost crying when I told him yes. He’d heard enough. The diagnostic laparoscopy was explained to me and when he presented me the consent form, I didn’t hesitate in signing it.

A year and a half later I had surgery (private health…not cheap) just after finishing all the requirements for my degree and applying to graduate nursing school. I’ve told the story of that surgery and my diagnosis in other posts, “The Name Game” and “Feeling the Calling”. But I wanted to write about how I got there, the doubts that plagued me and continued to even after signing that consent form and in fact up until they wheeled me into theatre. I, like so many other women with this disease, didn’t believe in my own suffering for so long and let people who didn’t know what they were talking about tell me that my pain wasn’t anything. After I started to accept that my pain wasn’t normal, I was afraid to tell people because I worried that they wouldn’t believe me due to the fact that I’d done such a good job keeping it a secret. The worst thing you can say to someone with endo is: “you don’t look sick”.  Even now endometriosis is a confusing world that I’m still trying to wrap my head around. I’m still dealing with pain and unfortunately at the moment I can’t say that I feel that much better than before. But I have something more than I did, I have a name and a reason for why this pain is happening to me, I have things that I can try to help it, and I have a specialist that I know I can count on and have known it since I walked into his office two years ago.

The funniest thing of all is that two men probably played the biggest role in getting me to realise that my pain wasn’t a punishment for being born female, it wasn’t just my burden to bear, it was endometriosis. To that teacher, who knows who he is, and my amazing doctor…thank you, I couldn’t have done it without you.

To my endo sisters, this story that I share is my thanks for the stories that you let me read during that time of uncertainty. Your strength is inspiring. One of the greatest moments for me was when I recommended my specialist to another local endo sister and she reported that for the first time in a while she felt hopeful despite her debilitating symptoms. It felt good to spread the love and help someone else. I’m lucky to have a supportive family, but I’m just as lucky to have found thousands of beautiful sisters across the world who give me the faith I need to carry on.

To be continued…Part 2: Things Women With Endo Wish You Knew 

This Is How I Know It’s Real

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If you’ve never felt it, you’ll never know and never quite fully understand. For that I am glad, because I have never met anyone upon whom I would wish this pain (and I’ve met some really annoying and kind of generally abhorrent people). Despite this, I’m going to attempt to paint a picture for you, and it’s for the purpose of education. It’s for every woman who has ever had to hear the phrases: “It’s all in your head”; “It can’t be that bad”; “Suck it up”; “It’s only period pain”. It’s so that maybe you can be another person who is supportive and sympathetic to women with endometriosis, a person for whom we are eternally grateful for instead of epically resentful of.

Every time one tells a woman with endometriosis any of the above phrases, or variations that insinuate that her pain is somehow fabricated, dramatised, or not in fact there, one adds another page to the already burgeoning narrative she has been fed since adolescence. A narrative which tells her she is firstly, not to speak of such unsavoury topics such as menstruation, and secondly, that any pain is to be quietly tolerated and dealt with because it is merely a women’s lot to bear in life. It’s a (rather sexist) narrative that many of us with endometriosis have begun to re-write because we finally have the proof that everyone else was wrong. It’s not normal to have endometrium-like tissue growing all over your organs, wreaking havoc on the body around it. The same goes for women with conditions like polycystic ovarian syndrome, adenomyosis, and uterine fibroids just to name a few.

To put it crudely, endometriosis is a real bitch. It can grow back even once removed, it can cause adhesions and scarring, it can make your organs stick together, and rob you of your fertility. But you cannot see that happening inside of you, so how can you know it’s there? Though before I was referred to a specialist I didn’t think there was anything wrong with me and that my pain was normal, now everything I experienced I see in a new light and it reminds me that my endometriosis is real, it’s there. It always was.

This is how I know it’s real…

I know it because as a teenage girl I watched the other girls at school look fine and happy and energetic every day of the month and wondered if they ever even got their periods, because mine made me miserable. I would feel sapped of all my energy and pain that felt like many violent hands squeezing at my lower abdomen very tightly would suddenly sneak up on me, and yet be gone as suddenly as it had started (and would start again just as suddenly).

I know it because everything I had been told about periods said that any pain should go away if you took a Panadol or used a heat pack, and mine did not. Not ever. My abdomen was just warm as well as sore and my sensitive gag reflex was reeling from trying to swallow tablets (endo fixed that for me, you take so many pills it’s hard to have trouble anymore).

I know it when I have tried to describe the pain to people that cannot know, I use this analogy and it makes them say “ouch” and squirm uncomfortably: Ever get a calf cramp? A really bad one? The kind that comes on all of a sudden and before you know it you’re trying not to scream and desperately trying to stretch out that angry muscle? The kind that feels like the muscle is actually being torn from your body? That’s what my uterus feels like. Only I cannot stretch it out, I cannot do anything to give myself sure relief; I can only wait and hope that mercy will come soon. If I am in public I devote all my energy to not screaming, because the last thing I want is people staring at me as though I am insane.

I know it because at sixteen when I told a doctor, she put me on the Pill and told me not to worry too much because that might just make it worse, even though she seemed more concerned than I was.

I know it because two years later after the pain became worse and more frequent despite the medication (and sitting in pathophysiology class hearing about ovarian cysts and uterine fibroids while on my period made me want to throw up), that same doctor wrote me a referral to one of the best endometriosis specialists around. I found this out after looking him up the night before my appointment and being appalled because there was no freaking way anything was that wrong with me, and I would officially become a time waster at that appointment…I was not okay with that. Despite that, I went anyway because some part of me hoped that pain like this wasn’t normal and maybe he could make it go away.

I know it because when I went to see the specialist I didn’t feel like a time waster. He made me feel like I belonged in that expensive tub chair in his office because as he asked me questions all the answers suddenly seemed to point towards endometriosis in a way that I believed. I was with him for thirty minutes and by the end I had a consent form for exploratory surgery to go hunt it down where it lived.

I know it because in the year and a half it took me to actually get to having the surgery (private health is expensive y’all) I was still in pain and yet still fought with myself about whether or not I had endo, terrified most of all of not having it and having no reason for my pain. Of having surgery only to find that I had been stupid and mistaken every time I had dared to take my wonderful, kind gynaecologist at his word and believe that I could have endometriosis.

I know it because I cried on my way to theatre for the same reasons and when I woke up from surgery the first thing I asked was “did you find it?”. I was still under the affects of anaesthesia and do not remember even now to whom I addressed the question, or what the answer was. I could not even say for sure that the conversation actually happened if not for my surgeon confirming it. I cried because when I came to my senses my surgeon and the anaesthetist were gone and the shift change had happened so none of the nurses could give me an answer and instead just hugged me and gave me more pain meds.

I know it now because even after surgery I’m still struggling with controlling the pain because my game plan right now consists of throwing spaghetti at the wall to see what sticks. I’m trying everything I can and am thankful for my wonderful specialist who always makes me feel like I am lucky and well taken care of.

I know it when I tell my story and other girls tell me it sounds so much like their’s and I wish they were in front of me instead of online so I could hug them and tell them that it’s okay, because someone else knows what you know and has felt what you have felt. I understand, and you understand me, and it’s the greatest feeling I’ve ever experienced.

I know it as I type this post having swallowed two tramadol and two panadol, and the pain is still killing me, because I dared to walk around with my friend today.

I know it because endometriosis changes the way you look at the world and your life. You look for small wins and you appreciated good things that you do have. I look at my future with both hope and fear, worried that my dream of becoming a perioperative nurse will be hindered by this disease.

I know it most of all because I have seen it. The surgeon showed me the photographs from my ex-lap surgery and I could actually see the endometriosis and adhesions inside of me. Even though the relief of knowing he had found it wore off, and fear hit me like a ton of bricks, having physical proof that I was not insane is something that grounds me. I am not weak, I am not crazy, I have endometriosis and sometimes I have bad pain days; that’s okay, it’s okay to not always be okay.

Despite what this disease has taken from me, and may one day take more from me, I am in fact thankful for it…for the name, for the reason, for proof that I am not crazy. I own endometriosis, it does not own me. It’s like a game where you have to figure out the rules as you go, but when the game is over I will not walk out the loser (yes, that’s a Springsteen song). More importantly, I have found many beautiful Endo Sisters across the world who understand exactly how this feels and who remind me every day that this disease takes many forms and can take so many things, but the women who have it are the strongest, sweetest, and most powerful human beings I have ever had the pleasure of sharing with. They inspire me to hope and be better every day, no matter what my pain.

This one’s for all of you.

“Do You Even Know What I Do In There?”: Media Representations and the Nursing Profession

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“Luca do you even know what I do in there?” Abby Lockhart asks Dr Luca Kovac in fictional medical dram ER. Abby’s frustrated question about her role in the emergency trauma echoes a question asked by many a real nurse when dealing with doctors, medical students, patients, their families, and members of the public. Medical television shows are some of the worst offenders for the representation of nurses, and while ER can be said to be better than others for actually portraying nurses in the main and supporting cast, none have quite given nurses the portrayal they deserve. Is this part of the reason that nursing is still such an undervalued position in society? There is a definite failure of most people to appreciate the professionalisation that has occurred in the profession over the last twenty years, and it’s not just laypeople. One thing medical television shows do seem to accurately capture is medical students and young doctors’ underestimation of the value of registered nurses.

The photograph above is the group shot from season 6 of ER. There is one thing common to almost all season photographs for this television show: only one registered nurse is ever featured. For the first six seasons it was Carole Hathaway played by Julianna Margulies, then Abby Lockhart (Maura Tierney) until she entered medical school in season 10 which made way for Samantha Taggart (Linda Cardellini). The nurses that have been there long term (Haleh, Lydia, Connie, Lily etc) are considered merely supporting cast members and their nursing role is featured only in relation to doctors’ orders. Additionally, their portrayal is often highly stereotypical with the group often sitting around the desk gossiping and laughing while dismissively telling residents that they’ll get to their patients soon. The “main” nurse is never portrayed like this, and the portrayal of Carole, Abby, and Sam are some of the better I’ve seen though their roles have become more outdated as the profession continues to grow (Carole for example ran from 1994-2000, an era throughout which nursing began to see great changes in education, training, and responsibilities). However both Carole and Abby expressed desire to become doctors after feeling disenfranchised with their roles in the emergency department, with Carole scoring high on the MCATS and Abby entering the series as a medical student who returns to nursing after her ex-husband fails to pay her tuition. Abby eventually succeeds which necessitates the entry of Sam in season 10. While the role of the nurse is portrayed fairly well for the time period, the series underestimates the number of nurses in relation to doctors, and assumes that most nurses secretly yearn to be doctors. The tension between nurses and young doctors is best expressed by Carole in season 6 when Lucy Knight, a medical student, makes the brash statement: “you can’t just do that; you’re a nurse and I’m…”. Carole cuts her off angrily saying, “you’re a what?! You’re a med student”. Lucy already has taken on the doctors tell nurses what to do persona as only a fourth year medical student. In shows such as House MD and Grey’s Anatomy nurses have an even less present role and often exist only as people standing in a patient room or as sexual conquests of the doctors. Their role is not only subordinate rather than in partnership with doctors, but they generate very little of their own care and instead sit around and wait to be commanded by a doctor. In House MD, no doubt to enhance the comedy that is House’s personality, nurses are often addressed crudely and made fun of and, again, frequently serve as sexual exploits or girlfriends for doctors like Chase and Taub.

With portrayals of nurses like this in some of the most highly consumed television programs how can we expect patients to think of us as highly trained professionals who have a semi-autonomous practice, and who work with doctors as part of a team instead of as placid, smiling assistants who simply do everything doctors tell them? The role of nurses needs to be public knowledge, otherwise we cannot expect our patients to know that they can ask us certain questions, or expect a high standard of care. Even upon telling people closest to me that I was going to be a nurse, many of them doubted that I would actually do it or assumed that I would later go to medical school. That’s because they had it in their head that nurses do things like fetch juice or water, clean bed pans, and shower people. While these may be some of the things RNs are expected to do, many of these tasks actually now (in Australia at least) fall to enrolled nurses (Diploma as opposed to degree trained) in large hospitals where one is fortunate to be part of a team of nurses. In smaller hospitals or primary care RNs may do more of the above duties, but it is a small part of patient care. In modern nursing you’ll find us in the operating theatre, as scrub, scout, or anaesthetic nurses; as nurse educators, consultants, or managers. The role of nurse practitioner is an interesting one which has come about in the last twenty years or so. Nurse practitioners undergo advanced training and can order their own tests, refer patients to specialists, and prescribe medications. In Australia this role has helped to relieve pressure on overcrowded GP clinics and as an extension overcrowded emergency departments. Nurse practitioner run clinics mean that minor illnesses and routine care can be performed by nurse practitioners. These clinics have since expanded to include some GPs for extended emergency care after hours that would otherwise result in long wait times in busy emergency rooms.

When asked what a doctor does, one generally has an excellent idea. Even when asked what a specific doctor does such as a surgeon, obstetrician, or cardiologist, most people still have a pretty good idea of what that entails. How do we get people to recognise what nurses do in the same way? How do we help patients to understand the different levels of nursing (i.e. Assistant in nursing, Enrolled nurse, Endorsed Enrolled nurse, and Registered nurse) and what this means for them? A better understanding would help patients better comprehend hospital resourcing and understand why certain staff can or cannot directly attend to a request (for example, an RN is running to an emergency and a stable patient requests water or food…they may have to wait just a little because an RN needs to be present in an emergent situation). Furthermore the role of nurses is often extremely undervalued with many members of the public or even hospital staff believing that nurses do not participate in complex care and do only basic tasks. Thus when nurses attempt to gain better conditions, pay, or benefits people are quick to ask: do they really deserve it? Damn right we do…and here are some examples: In post-anaesthetic care nurses take the reigns. Long after the surgeon and anaesthetists must move on to their next surgery, the PACU nurses care take care of patients’ pain, emotional health, and are on the look out for post-surgical complications that can be fatal if unnoticed. The scrub nurse is an essential member of the surgical team with many surgeons adamant that a sharp and educated scrub nurse makes their job easier and safer. A good scrub nurse knows the procedure the surgeon is doing so that, for example, if the surgeon calls for scissors but the nurse sees the patient is bleeding she realises the surgeon means a clamp and anticipates the mistake before it happens, saving time and the patient’s life. An ICU nurse must juggle the complex care of a patient who may be on the verge of death, while many specialists come in and out they must ensure medications are given correctly and look out for overprescribing or adverse reactions

The roles of nurses are varied and take on many forms, and it’s time more people knew it. Respect for a profession that touches so many lives is essential in modern medicine and public education about the role of nurses and their position within the health care team could help immensely with this. Nurses should not be so undervalued by so many for a job that would be obviously missed if every RN, EN, and AIN failed to go to work tomorrow. Do yourself a favour and educate yourself about the many different health care roles, especially if you have frequent contact with the healthcare system. In the majority of cases, the people that care for you are passionate about what they do and have worked hard to get there. Many of your nurses have Masters degrees, graduate diplomas specialising in their clinical area, as well as their qualifying degree. They work hard every day, often nights and weekends, often sacrificing time with their own families. It’s time we recognised the value of this work once and for all.