The Crackpots and These Women

An Ode to Women with Endometriosis in Their Quest for the Holy Grail of Specialists.  

crackpots&women cover

I am eighteen years old when I step into the small waiting room of my specialist for the first time at the private hospital on the hill near the river. I admire the comfortable tub chair that I am seated in, much more inviting than the too-soft couch at my GP’s office that often threatens to make me look like an invalid falls risk as I stand to see the doctor. Eighteen year old me is much difference to me now. Her major is still English Literature, not nursing. Her firm belief is that her Masters degree will be in teaching. She is still worried about the physiology class she is missing to be at the appointment. Most differently, she doesn’t think that her pain is anything to worry about and her greatest fear is wasting the time of this doctor and that he will tell her to go home and try yoga or ibuprofen. Little does she know that by the time thirty minutes is up she will have a name for what she has been experiencing since fifteen and a surgical consent form to go and find it. 

I can still remember everything about my first specialist appointment, what time of day it was, what I was wearing, and the class I had skipped to be there. In the grand scheme of things missing one lecture on cardiac muscle turned out to be harmless, especially after going to nursing school and knowing everything I could possibly want to know on the subject. The green blouse I was wearing has since been worn to death, like every item I clothing that I believe makes me look thinner. But I have since memorised every detail of that waiting room because I have been back there so many times. The man himself is a kindly, older gynaecologist with a speciality in endometriosis who is well known for being “one of the best”. I came to him by accident. My GP gave me the referral after she wasn’t satisfied that I had control over my cramps, an issue I’d raised in passing, more of a curiosity than a complaint, at the age of sixteen. I barely bothered her about the pain because I was convinced, with no evidence mind you, of its benign nature and that, like so many other women, it was mine to bear. However when she realised that I’d told her about it first when I was in year twelve and was now in second year university, she was firm in her recommendation that I have a specialist referral. “I know a guy”. Doctors always sound to me like Al Capone when they say this – like their referral list is actually a little black book of “professionals” who will “take care of things”. Whatever, I accepted her guy. I didn’t even realise how lucky I was to have been referred to an endometriosis specialist, a rare bird, who knew his stuff and would have the surgical expertise to diagnose and treat endometriosis when he found it. I didn’t know what I didn’t know. But I was comforted at eighteen by this considerate doctor, who listened to my story and helped me make sense of it, made me realise that behind the reassurances of my mind was a mild yet ever present panic that it wasn’t okay to sometimes wonder if your period would require a trip to emergency (even if every time I came close I talked myself out of it – “it’s fine” she says, even though moving or breathing too hard is really out of the question). This same guy took my hand through surgery, and delivered me my diagnosis on the other side. He reassured me when my pain persisted and sent me for scans so that I could see the proof. When he thought I needed more help with pain he gave me a referral. Her guy did good.

I am twenty years old when I sit in another waiting room at the private hospital on a completely different hill. I have the day off classes because in nursing school you can’t just skip them anymore – all are compulsory. I spend an hour with a knowledgable woman who explains the science of pain to me and gives me medication to help. This is on top of the three new medications I have received from my specialist – I’ve started writing them down to make sure each doctor I see knows the score. I have my diagnosis, I have my treatment – but I’ve never been in more pain. I just want to know why. But going back and asking all the time is an expensive undertaking. I am exhausted, and I wish it wasn’t so hard. I am comforted by my new colleagues who are understanding when I tell them that I have endometriosis, because inevitably it couldn’t be hidden forever. Twenty year old me doesn’t know it yet, but she’ll get through this and her pain will be the best controlled it’s ever been – but it happens by accident, a combination of forgetfulness, reading the nurses’ drug guide, and becoming her own advocate. 

The conversation I have most with other women with endometriosis is about the doctors and professionals we see, because everyone’s got a recommendation and a warning after so long fighting. My list is short and not filled with any horror stories, I love my guy and am just glad I haven’t had cause to bother him for more than twelve months. But others have war stories. Tales of GPs who never listen, of doctors who use “like giving birth” as context for a pain scale (um, rude), and specialists who are brilliant surgeons but don’t know much about what to do with you afterwards. There are also successes. The discovery of a specialist who just “gets you”. Finding a multidisciplinary practitioner like a physiotherapist who has a vast knowledge and experience with endo and wants to work with you to help with long term pain relief. But more often than not these wins are littered with stories of women who had to push on when they wanted to give up, of treatment that makes you cringe at best, cry at worst. Getting a primary health physician to take one seriously is half the battle, but often it doesn’t stop there. Patterns of referral suggest that most women who present to general practitioners with endometriosis symptoms, even multiple time, are not referred to gynaecologists. Management of endometriosis cannot be left to just any gynaecologist, otherwise they are liable to miss things or lack the requisite knowledge to provide women with the best outcomes. But even endometriosis specialists aren’t perfect. There is a great challenge in being a specialist physician, as evidence and recommendations are constantly changing and evolving and responding to this can feel like sandbagging a beach while the tidal wave bears down on you. Some doctors become set in a certain way of doing things, even though evidence may suggest this way is no longer optimal practice. The attitude that endometriosis can be cured via hysterectomy or pregnancy is one that prevails even among specialist doctors, and even more so among those without specialist training. The goal of surgeons is often focused, cut it out and stop the bleeding. Excision, as opposed to ablation, is certainly now the gold standard for helping reduce disease and prevent it growing back and it’s the first step – but it’s not the last. Overall a more holistic approach is required, because endometriosis effects multiple systems within a body.

Has anyone really found the perfect specialist? Do they exist? There is evidence with most chronic disease, endometriosis included, that a multidisciplinary approach is more likely to convey long term success, because no one can know everything there is to know. As a member of a multidisciplinary health team I tend to value this assessment – I can’t do my job in isolation, my patient wouldn’t get the best treatment otherwise. My experience after surgery also helped me realise this. There was a point where my specialist knew he needed to provide me with other resources, and that doctor further provided me with referrals to other allied health professionals based on what was effected. I also learnt a lot on my own, because I came to realise that I had to become my own advocate, armed with facts when I fronted to an appointment. The experience of of having symptoms dismissed or normalised both prior to and after diagnosis gives rise to what is known in literature as the expert patient. This is a story I’ve heard from many women, those who researched and stood up to specialists who dismissed them or told them not to worry. Those who presented doctors with their own research and actually had that doctor listen and respond to them. I had the benefit of learning this skill and gaining confidence as I went through nursing school, because I learnt how to communicate the needs of my patients to doctors and how to advocate for a patient. This was the advice to me of women who had been through so many doctors, learn to be your own advocate and do your own research. It is an unfortunate fact that endometriosis is not well known in the public sphere, despite improvement thanks to a number of organisations dedicated to the cause, and that knowledge about the disease is not consistent among doctors. Research papers are scattered with the stories of women who have felt betrayed by the medical profession, and the feeling of happiness and relief when someone finally understands.

But all of this is hard work, and having to research, pull together your own team of professionals, attend appointments, manage symptoms and still somehow manage to have a professional and social life can be draining. Dr Kate Seear calls this “the third shift” and accounts for another facet of unpaid work by women in addition to domestic duties. We shouldn’t have to work this hard, should we? Evidence points to a need for greater education of doctors to increase both their acknowledgement of symptoms and empathy for patients’ distress, it also highlights a need to respect the patients’ knowledge and recognise them as an expert in their care. This notion is in line with the concept of patient-centred care. Patient-centred care is drilled into nurses from day one of their degree, it’s an approach to health care that is grounded in mutually beneficial partnerships between health care providers and patients – where the patient’s goals and wishes are just as important as the practitioners. This approach recognises patients as capable of being experts in their own care. In the UK, an emerging role is that of the clinical nurse specialist in endometriosis – their role is set out by the Royal College of Nursing and includes postoperative followup, utilising “women-centred outcome measures”, organising referrals to the multidisciplinary team and being available to answer questions and provide psychosocial support to women with endometriosis. The role is not currently widespread and few health services take advantage of this nurse-led model, despite a wealth of evidence that nurse-led programs for various chronic diseases are associated with better outcomes. Perhaps what women need is not the Holy Grail of specialists, but an organiser, a mediator, an understanding ear. Surely we could outsource the third shift to an expert? Having a specialist nurse help one keep track of multiple professionals and act as an advocate when one is feeling lost or dissatisfied with the care they have received. Scope exists for this role currently, most likely in private practice (as with most things they tend to start here to prove their worth before the public system invests). Fertility nurses currently provide a similar role for those undergoing treatment for infertility – the fertility nurse is your go to, they provide you with information, perform tests, organise follow up and ensure you’re seeing the right professionals. They work alongside a specialist doctor, but one gets the benefit of continuity of care, as well as an organiser – a professional patient advocate!

As knowledge of endometriosis grows among the women who have it, it is undoubtable that they will begin to demand more of a system that has historically sidelined them, fobbed them off, and left them wondering if they’re actually insane. The unpaid work and emotional burden of a chronic disease with far less attention and research funding than others is significant and cannot be ignored. These women gather and share battles and victories, about the best, the crackpots, the men and women who changed their lives in the quest for answers. These women are strong and brave because they have to be, and having been both patient and practitioner I know the medical profession can do better. Patient centred care is not a marketing campaign or a company line, it’s in the everyday interactions we have with our patients that prove to them that we put them first above all else, and that when they talk we listen. At eighteen I didn’t know how to make myself heard, or that I even needed to be heard – but I had a doctor that knew my story was important and fought for me. Every patient deserves such a person, and it is my hope that through the hard work of organisations like EndoActive, QENDO, Endometriosis Australia, and Endometriosis UK (to name a mere few) that more people will realise the need for such courage, that the men and women of medicine will fight for their patients to receive their diagnosis and treatment.

More often than not the answer to basic questions in medicine are right in front of you, you just have to know how to listen.

I am twenty-two years old today. In November it will be two years since I had surgery to diagnose my endometriosis. In that time I have learnt so much about this disease and talked to so many women who have walked the same streets and felt how I have felt, they are inspiring and a blessing. I have become a support worker with an endometriosis organisation so that someone else has a sounding board and can become empowered to be their own advocate. Twenty-two year old me doesn’t know what will happen in the future, whether her endometriosis will grow back, whether she’ll have children, whether she can handle if either of those things happen. But she is hopeful, because she has a network of inspiring endo sisters that reach the farthest corners of the world and some who regularly meet just kilometres away, as well as a trusted specialist – the guy, I bet on the right one. 

Advertisements

This Is How I Know It’s Real

IMG_0926

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.

We Get Up Again….But Then Some Jerk Cuts Our Bulk Billing

824063-malcolm-turnbull
“It’s never been a more exciting time to be an Australian” – Malcolm Turnbull.

And yet for Australia’s ageing population, cancer sufferers, and patients of chronic disease it appears it’s never been a more expensive time. The LNP in the last few days announced their budget cuts and aim has been taken at Medicare, aged care, and radiation oncology programs. Specifically the proposal for $650 million to be cut from Medicare which will mean bulk billing  incentives slashed for diagnostic imaging and pathology. This article will focus on this particular aspect because it is one that has become increasingly important in my own life as well as my fellow endo sisters that I have connected with over the past few weeks. These kind of cuts are a blow to people with chronic illnesses including cancer. It seems that after enduring so much the government, a body with a duty to protect and care for its citizens, will be making it harder for us to live an already complicated life.

If you know anything about endometriosis, the second that diagnosis is delivered you know that you’ll be seeing the office you’re sitting in a lot. I remember thinking: I like these chairs, they’re comfy, that’s good because I’ll probably be back here again. I also remember the MRI my doctor sent me off for next, and the close to $350 pathology invoice I received a few days later. At the bottom of said invoice was the amount I would get back from Medicare, not all of it, but enough to make the amount I had to pay less significant. I got money back from Medicare on my surgeon and anaesthetist’s fees too which wasn’t a lot when compared with the total cost of the surgery, but it was helpful especially since I had no private health insurance. The thing about endometriosis is that not just any gynaecologist can pick up a scalpel and know what to do when they find it, or do what needs to be done without damaging the organs implicated. If you manage to find one of them in the public system it’s likely you’ll be waiting a while because the state of public health in this country is not something to be proud of. State governments like the Labor one in Queensland have been trying to fix that with initiatives like legislated nurse-patient ratios and policies to help clear surgical waiting lists. But many endo or “might be endo” girls have no choice but to go to private for the expertise or because they simply cannot wait. If they’re lucky they have private insurance, but not all of us do. So those little cash backs we get from Medicare are important. A lot of sufferers have tread a long road to get to the exploratory laparoscopy that will give them their diagnosis, a psychologically and financially draining road at that. When you finally get it your journey has just begun. The surgeon may have excised it, but endo can grow back and depending on the severity you could be in for a lot of time sitting in your specialist’s office. A part of making sure no one gets scalpel happy too soon is diagnostics and pathology. No Medicare benefits will only add more costs to our financial burden.

This comes after news earlier this year that certain over the counter medications may be set to become prescription only in an attempt to curb community addiction. The medications are the kind that endometriosis patients need just to get out of bed some days, not because they are addicted but because they are in pain. We already spend a good deal of our lives in doctor’s offices, adding more just to get pain medication seemed a dire prospect for many of us. We get knocked down so often by this disease, and despite getting up and trying to keep going things like this keep us falling. Being newly diagnosed I haven’t had to deal with as much yet, but the stories of my endo sisters are enough to make me expect the worst but hope for the best.

Now let’s talk about a more deadly consequence of these cuts. Patients who depend on diagnostics and pathology even more than endometriosis sufferers are cancer patients. In their case timely and accurate use of these services may literally be the difference between life and death. Delays in diagnosis cause delays in treatment and ultimately can mean progression to later stages of the disease which are harder or impossible to treat. If one truely wanted to save money and resources, one would realise that the cost of cancer treatment in the later stages which requires more staff, more medications, more resources, costs the public health system more. Therefore early detection, diagnosis and treatment would have economic benefits, not to mention lives saved. Once again the most vulnerable in society are footing the bill in the latest round of cuts.

It appears that no lessons have been learned from a leadership spill and fierce opposition to the last round of damaging cuts to health, education, and childcare. While Turnbull’s approval rating climbs, his policies reek of the same Abbott stench. These are not policies that are sustainable for people with chronic illness and isn’t it time someone who wasn’t vulnerable helped to “clean up the budget mess”? It’s time to stop playing the Labor blame game because more than two years in it’s your responsibility now and the situation has only gotten worse. We’ve suffered enough and so direct your poorly aimed wrecking ball somewhere else.

Well, it seems like I’ve been playing your game way too long
And it seems the game I’ve played has made you strong
But when the game is over I won’t walk out the loser
And I know that I’ll walk out of here again
And I know someday I’ll walk out of here again

– Trapped, Bruce Springsteen