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