Enigmatic Endo and Collaborative Consideration by Amy Jane Melhuish
What’s with the *…? That ‘1 in 10’ and other statistics that get used are, I believe, more than likely incorrect. We – the global endo community – are woefully lacking in truthful, realistic, centralised data AND information. When presented with statistics, it would be wise to consider how (for what purpose and on what scale) and by whom (with what training or financial backing) they’ve been compiled, presented or used in the decision making process for patient ‘care’. Data and information are NOT the same thing.
You’ve all heard of asthma and diabetes, right? Well endometriosis is as common. Yup! Shocking. You’ve all heard of cancer too. Well, endometriosis can be described as “the most aggressive benign disease”.
(Please note : I am not in any way saying one is worse / better / easier than the other…my heart goes out to anyone finding themselves dealing with any health problems and all that that can entail. And note to anyone who isn’t: please be grateful and attempt empathy towards others, and take heed of your own daily choices so that it may forever stay that way for you. In either scenario, words I live by are « what can we learn from this ? » and « how can I … » rather than what I can’t do at that time …)
Endometriosis (end-oh-mee-tri-osis) can / does affect multiple organs and, whilst every case is unique, endometriosis is a body-wide disease and is most certainly NOT “just a bad period”. I’ve literally heard it all over the years (nearly three decades), as have many others on their journeys.
Here are some actual comments made directly to me and/or written in my notes, by doctors from whom I was seeking help, some of which have been more or less detrimental to my mental as well as physical wellbeing along the way, and include amongst many others:
… go have a baby THEN come back to me (whilst single & unemployed)…no don’t be dramatic, you don’t need to freeze your eggs at your age (during a meeting with my then partner) …well you are one of those career women aren’t you (whilst being self-employed because I was unreliable due to my health)…
…are you sure you’re not just imagining this, you don’t look ill (I’d purposefully not even worn makeup nor brushed my hair that day)…you’re just a bit stressed (I have techniques)…you’ve had a hysterectomy, so you’re all fixed (during discussions regarding other body parts failing me)… oh hello AGAIN (so sorry to be a bother)…what on earth have you got that trolley for ? (to maintain a level of independence and be able to leave the house)… why haven’t you gone back to work ? (you’ve obviously not read my notes then) …oh that bump ! Congratulations ! (you’ve definitely NOT read my notes then)… it’s just a little procedure, you’ll be back at work in a couple of weeks … it’s just constipation… no this examination doesn’t hurt (when it just did) …nothing showed up you’re all fine (no I’m not)…
Some of the above were during the thirteen years it took me to get a diagnosis (eventually back in 2005), others were since, as in WITH a surgically-confirmed diagnosis, and ongoing health problems.
We – patients, practitioners, the media – have a duty of care to stop and correct the spread of misinformation. Endometriosis tissues are similar to but not the same as endometrium that lines the womb. It has been scientifically proven so, repeatedly, for a long time now! …rather unfortunately the name given to the disease ‘back in the day’ most certainly does not help this common misconception!
It is a body-wide disease (different patients have it in different locations & combinations), is NOT confined to those with a womb (men also have it, women who’ve had hysterectomies for whatever reason or are in menopause can / still have problematic endometriosis) and one doesn’t have to be a certain age.
These still far too common misconceptions – albeit understandable when a journalist Googles endo quickly for an article, or if a practitioner simply abides by the few hours they had on it at Med School – are NOT helping true progress when it comes to the likes of classification of this disease, treatment pathways, debates highlighting the need for cross departmental involvement (health AND Social), more money for research, the correct (financial and otherwise) support for those with it and so on and so on.
Time’s up on misrepresentation included during crucial discussions leading to national guidelines and practitioner education and practices…which leads to (mis)treatment of patients, across the globe.
We’re in this together: if ‘we’ continue to not look, ‘we’ will continue to not find nor document it appropriately. So practitioners and legislators will still be relying on or referring to incorrect data as ‘evidence-based’ decision-making. Most of us (from years of observing numerous groups) do have coexisting pathologies. However, what diagnoses we end up with depends on what practitioner is seen on what day, for how long, and what was documented where & how (what training/experience have they & their support staff had and are they all having a good or bad ‘day at the office’ + where the patient is at in their cycle/flare at the time of the appointment and if the tone of the consultation has lead to PTSD shutting them down or to feeling confident enough to open up).
Endometriosis – historically & currently – hasn’t been considered as a primary source of many symptoms. It should be, and likely is. ‘The system’ for scheduling & referrals as currently stands in most countries is adding to unreliable data for practitioners, patients not feeling heard nor taken care of, and to the suicide rate. Collectively, we can change that rhetoric.
Ignorance isn’t bliss, actually. Ignorance is an opportunity to learn, to share, and to change lives for the better. When it comes to endo, I can say from experience that ignorance is dangerous. And it’s costly. To healthcare providers (incorrect / unnecessary protocols) and to patients.
It’s costing people : Organs, bodily functions, relationships, careers, schooling, financial security, homes, their mental health, dignity and their ability to dress as their personality may wish (just ask anyone with ‘endo belly’ !) …I could go on, but I won’t. You get the picture.
These are all often unmerited side effects of a broken system and lack of training / empathy.
That’s avoidable! Now in my forties, I can’t tell you how many times I’ve said “but nobody told me”. Had I known, how many different life choices would I have made? I honestly can’t answer that. But what I can say, is that those choices should have been made clear and were mine to make.
Well this, right here, is your chance to know a little or a lot more than you may have known yesterday. Your chance to bring more up-to-date collated knowledge to the table in order to arrive at more informed decisions – be you practitioners guiding or patients deciding; all of whom are doing their best (one would hope) to navigate enigmatic endometriosis.
We don’t know what we don’t know, but chances are somebody else does. Follow the signposts.
After countless (literally in the hundreds) of consultations and conversations with medical professionals (specialists, radiographers, consultants & educators, general practitioners, physiotherapists, midwives, nurses, care assistants, support staff), across many organisations and disciplines (endometriosis affects multiple organs and bodily functions so ‘we’ get divided-up).
Over the decades I’ve had it (it’s a chronic condition that CAN be improved, but one that also needs to be recognised officially and globally as the disability that it is / can be), in multiple countries (I’ve lived in UK, Australia, and France; and attended medical conferences and support group meetings across the globe over the years).
After all that and multiple surgeries and multiple ‘treatments’ and countless side effects and/or progression of the disease (still undecided amongst the medical community), I can say with experience, hindsight and conviction that:
Everybody needs to know endo!
Ignorance is a choice (with or without reason).
Knowledge is power (that should not be abused).
Whilst research data* gets presented at AAGL, Congresses and beyond, and debates are finally being heard in parliaments (some governments sooner and more willing than others), and the ACOG and NICE guidelines (and the equivalent in each country globally) continue to be questioned at multiple ‘levels’ by grassroots patient-led organisations as well as by some national charities; there is the harsh reality of how long these amendments take to trickle through ‘the system’ and how many lives are negatively impacted in the process. I refer to practitioners’ stress levels as well as patients’ quality of life here! Modern Medicine is currently being taught a newly titled discipline that should warn all to take heed, and not just when it comes to endo or the pelvis!
‘Thanks’ to increased media attention over these past few years, endometriosis may seem like a current epidemic*. It isn’t. Whilst the subject matter remains unsexy for marketing organisations, and often taboo amongst societies, time’s up. People continue to join forces and raise their voices. We WILL be heard.
Together we CAN! Together we WILL! Together we MUST!
If there’s a problem, there’s a solution. Solutions can and should be shared (please & thank you). We can individually decide if we want to be a part of the collective problem or collective solution.
Scientific debates regarding enigmatic endo are rife – and ‘should’ be respectfully encouraged in order to truly progress with the quest for a cure for this very common disease and everything associated with it. Egos and vendettas or personal mishaps aside (I don’t mean to belittle what I myself nor anyone else has gone through in phrasing it as such. I sincerely mean ‘each to their own’ with how individuals choose to react and proceed), there ARE still collective solutions that can and ‘should’ be put in place NOW in order to help those currently navigating the path.
Our collective objective ‘should’ be to help people today to make INFORMED decisions and find what works best for them from the options currently available, whilst simultaneously collectively paving a brighter and clearer path for the footsteps that follow …may their journeys have fewer “what the f*ck !?!? ” and “but nobody told me” moments than has been and continues to be the case for millions upon millions of people globally.
Though this publication is comprehensive and broad, there are some other treatments not listed herein at the time of publishing that are currently being researched or advanced, or that are already in use in some countries (though patients there may not even know of it!).
I don’t have regrets, life’s too short. Believe me when I say that I’ve worked on myself a LOT to get to this point (and self-development never stops!): to be able to share whilst vulnerable and to search for solutions rather than focus on blame. But, dang, I sure wish I’d had this and the other resources mentioned within it decades ago! So please do your bit to ensure that others now do!
In the meantime, I, like others, will keep working on plans to bridge gaps.
Through evidence-based advocacy + evidence-based medicine, may we move forward. Globally. May each patient get to form their own pathway that’s right for them, based on informed decisions made with and referred by their team.
And may each patient have access to an educated team with which to do so.
Hindsight 20~20 vision in 2020 and beyond. We’ve a lot that we CAN learn from to propel us forward.
Amy Jane Melhuish is an independent patient mentor, global advocate and award-winning entrepreneur drawing on her professional and personal experiences to help the collaborative efforts for positive change.
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