By Fiona Stevens - Ambassador
Solidarity! Let’s tell the world how to treat us & pack our suitcases with management teams who understand endometriosis & support us for the longest time. It’s an exciting time for endometriosis awareness. Browse the net and you’ll discover endometriosis news and unprecedented articles. Patient stories have intensified; celebrities suffering from this condition have added a new dimension. All good for our cause. Yet, the origin of endometriosis is still a puzzling question for scientists, and the most perplexing challenge is how best to treat and manage patients with this condition. Am a huge fan of expert endometriosis management teams & patient centred care. Let’s tell the world we want more. Since diagnosis some 18 years ago and over time I’ve built a castle of treatment and management options. Excision surgery was a key ingredient to my treatment program. Like many of you, I exhausted more than 10 years of swollen uncertainty. Armed with yellow pages’ phone book & landline, I tracked down my wishing well; advanced laparoscopic surgeons who recognised endometriosis, listened to me, took a good clinical history such as location & chronic nature of baffling symptoms, arranged imaging tests & most importantly moved cautiously with treatment options. Ultimately, I trusted & made a life changing decision; to undergo laparoscopic excision. Before the procedure, risks & complications were discussed. Excision surgery is “specialised as cancer surgery” and cancer surgeons mentioned it was more difficult, explained Lone Hummerlshoj World Endometriosis Research Foundation & World Endometriosis Society Chief. My team of advanced surgeons operated for many, many hours taking time & care to identify plus excise endometriosis (including a large 5cm ovarian endometrioma). The endometriosis was invasive (bladder, ovaries, uterosacral ligaments), but ‘cut out’ instead of being ablated. My ovaries were preserved (not functioning well, but - mine) & thank goodness weren’t “routinely” removed. Sometime following during the post-surgical consultation I was shown images of the surgery in addition to a pathology report which confirmed endometriosis (very important – all surgeons should follow suit). This gave me clarity and I was grateful. Nobody can predict treatment responses, but I recovered well. I made deliberate efforts to learn all I could about endometriosis. I read voraciously, took personal responsibility to make lifestyle adjustments; including dietary changes, aerobic exercise (cycling) & yoga. A plant-based diet was adopted consisting of whole foods, farm fresh, organic & seasonal which made me feel amazing. Staying one step ahead of the vulpine wolf of destruction was a long-term commitment & nourishing my body from inside out was a priceless prescription; food therefore became thy medicine & exercise, relief for the material body. As an endometriosis patient & Creative Arts Ambassador @ Endometriosis Australia, I’ve been able to evaluate the condition with great interest from a critical angle. It’s been a process of self-awareness, discovery and sensible choices. For almost 30 years I’ve munched on vegetarian options & in spite of what the meat, poultry & seafood industries dish out – am doing just fine. Without gall bladder (removed due to disease) & inflammatory arthritis I made a huge effort to incorporate anti-inflammatory spices like turmeric & curcumin into my diet. Fizzy drinks & processed foods are off the menu. I consider myself a low- maintenance chick (never coloured my hair, which is exceedingly rare for my age) & face & body weaponry is basic. I flung out synthetic skin care products more than 18 years ago & replaced with eco-friendly variants. Huge win!
Like many of you, I nursed plenty of painful moments, had my share of disappointing medical & surgical consultations & felt trapped in a tangled health care system, “they only can feel freedom truly who have worn long chains – the healthy feel not health in all its glow – in all its glory of full veins and flushing cheeks and bounding pulses, till they have known the interregnum of some malady that links them to their beds in some wilde – common – feverish hospital where all are tended – and none cared for, left to public nurses, paid for pity, ...but without kindness.” Lord Byron. Think we’ve all felt this sentiment.
Information Asymmetry. The societal economic weight of surgically confirmed endometriosis.
In economics, asymmetric information refers to when one party has greater knowledge than the other. This often leads to failure. There appears to be more to diagnosis than just long term intervals (on average 7-10 years). Primary health care transactions and decisions are not balanced and surgeons are directing treatment paths. The societal economic load of illness caused by (surgically confirmed) endometriosis is a huge issue & neglected skilfulness of endometriosis surgery = deep issue. Multiple laparoscopies ‘aaagh’ beyond the limits of acceptability, unfair & unimaginable, yet they continue for which purpose stricter guidelines should be considered. If surgery is the agreed option – only experienced, makes the ‘cut’. We need to erase this appalling track record of failed surgeries. Whichever way you look at it, it adds up to the same thing = no-value care, empty pocket$ & shattered lives. A lot is at stake, so for ‘crying out’ loud, good laparoscopic excision surgery by the upper echelon of practicing & high case load excision surgeons should be a fundamental ingredient to the treatment program, and vital if we are to improve the quality of lives globally. We need images and diagnostic pathology evidence, multi-disciplinary patient care & long term management plan. It’s important to note that Endometriosis doesn’t cause all pelvic pain, so if you’ve had excision, yet suffer recurring pain, investigations may be required to identify underlying cause.
New paradigm of health care for endometriosis patients
Private health care funds = industry driven by profits. I found this to be the case eighteen years ago. The day before scheduled laparoscopic excision, my private health care insurer advised that it was not going to insure me. By their assessment, endometriosis was considered a “pre-existing” condition. As you can imagine I was horrified & wanted to cancel surgery, but everything was in place. I assured them laparoscopic surgery was the only way to diagnose endometriosis. Words fell on deaf ears. Sometime after the procedure, I made contact with the health fund, and instead of pausing my case, ploughed on seeking justice. After a long drawn out written & verbal battle, to my relief, the insurer finally agreed to pay. Case won! Years have passed by and I still see many problems in the health care structure, health care funds and in the field of endometriosis. Importantly, there are divisive issues and unsettling differences. It’s absolutely time to address faulty lines of communication, treatment and management approaches. Emergency settings need ‘cleaning up’ too. Educate staff in ED about endometriosis & consider rostering white-coats (with an intravenous drop of empathy) capable of recognising the pattern of endometriosis symptoms and pelvic pain. Unhappily, endometriosis patients arrive at the Emergency Department CELLS with acute pelvic pain only to be sent home feeling so much worse; dismissed, psychologically confused, shattered and administered/prescribed medicines
loaded with short & long term side effects. This see-sawing movement from ED, one doctor to another useless consultation plus failed medical and surgical interventions continue. The tracks of complex pain associated with endometriosis and its psychological, broken relationships & marriages, fertility considerations and economic footprints which darkly follow are compelling reasons for health policy- makers to identify weaknesses (many) & design endometriosis patient centred care environments.
Worryingly, there appears to be a global undersupply of dexterous laparoscopic excision surgeons. If endometriosis is such a widespread problem (#1in10) – I beg the question of why aren’t there more? One can only surmise with certainty that the surgery is way too difficult for most and less aggressive surgical options like ablation are considered first line of attack. We know from the chorus of disapproval from thousands of voices that these surgical strategies (fulguration & ablation) are not always effective treatments for deep invasive endometriosis and are least helpful for long-term management. I guarantee that the best endometriosis excision surgeons (few and far between around the globe) have spent untold hours in operating theatres cleaning up ‘messy’ attempts made by others. Removing endometriosis (as much as is safe and feasible) with good laparoscopic excision surgery is central. Here’s my biggest worry - how does one choose a good endometriosis surgeon? Most lay persons are left in the twilight zone of uncertainty plus frustration. It appears an improbable surgical lottery, yet the surgeon’s dexterous hands and skill is absolutely paramount. There’s a shade of grey between gynaecology and obstetrics. Obstetricians deliver babies (they’re great at this); but advanced laparoscopic excision surgeons deliver better outcomes – plus + or minus - variables. Two clear-cut medical specialities and you have to know when to consult the right one.
Endometriosis patients have been for far too long ignored and from a patient’s angle it’s about time – tic-toc, hickory, doc. If you’re the initial health care practitioner & still unsure, refer on. As endometriosis advocates, we must continue to swirl our words around the social media sphere, because these are powerful reminders of how much more needs to be done. Our stories need to be shared and are not ‘empty talk’, but are filling minds with awareness; the game-changer. “But words are things and a small drop of ink...that which makes thousands, perhaps millions think”, Lord Byron. More than this, it is of crucial importance to circulate all stories as it is fair to consider this sharp condition from all angles. My reflection on endometriosis is not to problem-solve universal dilemmas, but merely pose questions. I truly believe agreement from principal stakeholders will never be reached until ALL endometriosis key decision builders co-operate, communicate & best serve 180,000,000+ global endometriosis patients. Endometriosis patients have been playing patience for much too long; it is the hour to deal a better treatment & management hand, clockWISE - in the same direction.
Fiona is a lifelong poet and Creative Arts Ambassador @ Endometriosis Australia. She is a Consultant poet with a special interest in the use of poetry as a creative & memorable art form for developing critical thinking & emotional literacy skills
Fiona has been involved in endometriosis awareness for up to 18 years. She has supported local events, Tour des Femmes, penned poetry for Hippocrates Prize for Poetry & Medicine, writer for an international endometriosis enterprise, Luminosity supporter, Endo March Australia supporter, supporting front line filmmaker (Shannon Cohn) @ EndoWhat? Sydney premiere, volunteer @ Endometriosis Association NSW & fundraiser, saddled up for 600km Great Southern Crossing Cycling Challenge (everyday hero) for Endometriosis Australia (biggest challenge thus far). Fiona’s had her lion’s share of fertility issues, IVF appointments, ultrasounds, blood tests, ruptured ovarian cysts, unnecessary procedures (including heart & carpel tunnel surgery). Fiona’s met the darkness & walked in the canyon of fear. She continues to be brave and fight for what she loves.
Further reading & thoughts
Great article by health researcher, Atul Gawande http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande exposing ‘no-value’ care. Please read. In the field of endometriosis multiple laparoscopies are unfortunately all too common & offer limited value. This absolutely disturbs me more than it should. I share your passion to find solutions & challenge current beliefs. Hysterectomy is not a cure for endometriosis. This needs critical evaluation and review in gynaecology. For just a short moment (surgeons) – drop power tools & think about MINAMALLY INVASIVE POWER OF REASON.
Views are my own.
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