Reaching Peak Frustration With Doctor Negligence & Medical Incompetence: Desperation & Despair At 3AM

I've been awake since about 3am. I know when something is askew in my life. Over the years I've been able to identify myself react in certain ways that tend to signal an event horizon of sorts where I've reached a point that requires radically different thinking or a change in course.

In this case, I have a fair idea about why I find myself with a coffee typing this post while it's still dark outside. My wife and I have reached a point of total exhaustion with the medical system and everything... everything about how it operates, how it trains people and the incentive structure that is critical to its machinery.

I apologise if I resort to generalisations in this post. Some of you may be vary rare individuals in terms of being formally medically trained and possessing anything more than a superficial care for your clients. To those individuals, I thank you for your contribution to the "profession" but your modus operandi does not fit our lifetime of interaction with the system. My writing is based on what we've experienced.

I encourage you to read my wife's posts at @beulinator for more details on the medical particulars. I'd need to take annual leave to form any sort of holistic summary here. Instead I'm going to relate the "straw that broke the camel's back" moment that recently took the form of a visit to a GP to get a simple referral.

This picture would reflect our frustration and pain but in my wife's case, sitting like that would be too painful so just getting well enough to suffer in a position like the one pictured here would be dream come true for us.

Long story not so long, my wife has a number of serious medical conditions, two of which are Lymes disease (an infection caused by a bacteria known as Borrelia) and endometriosis (an excruciatingly painful disorder in which the tissue that forms the lining of the uterus grows outside of the uterine cavity).

After a lifetime of experiencing the symptoms of both ailments, becoming intimately aware of how the body deteriorates with them and attempting to guide inept medical practitioners through their checklists before being ejected from the consultation with a slap on the bum and a "she'll be right" in order to make way for the next paying client, we have developed a well grounded, detailed and first hand set of knowledge on these issues; I dare say more so than the doctors who seem to just google it when we're discussing our issues.

The most recent encounter with a doctor has, for me, set us on a new course out of sheer infuriation. My wife's symptoms have been worsening of late. She'll now be up most of the night groaning and crying in pain. Have you ever had to suffer the experience of a loved one rolling around in the dark wishing for anything that would ease the immeasurable suffering that they're experiencing? It's a feeling of total flacid uselessness. Ever watched a war movie where the screams and moans of the dying blanket the scene? Swap the combat zone for the bedroom and that's literally our experience.

The hormones that my wife has been on for years to stop periods have recently become less effective. It's been over a decade since her last period and, as we recently found out, this comes at a significant risk of other complications such as clots. Not one medical practitioner has alerted us to these additional risks despite prescribing the hormones in an ongoing fashion.

These can't be avoided either. Periods are simply too damaging and painful to endure. As a child my wife came very close to gutting her own belly with a kitchen knife to cut out the pain in her abdomen in a desperate attempt to alleviate pain through either home-surgery or death. This is the reality of not having access to this medication and, this is the reality that is returning to us now even while on the medication.

Simple enough, you'd think? Just go to a gynecologist, again, and get yet another professional assessment - which will likely involve recommending yet another surgical scraping, we're up to two of those already just for the endo... let alone the other surgery that the doctors performed simply "to open you up and have a look at what's going on as we just don't know".

The image I sit with for hours on end every time my wife goes under the knife. Experience has taught me that she's never come out improved; always with new pain, symptoms and immobility. The only thing that reduces is our time, financial and emotional resources which consistently decline every time we deal with medical professionals.

A referral is required from a GP in order to see such a specialist... so that we did. This doctor proceeded to take a very brief medical history. The condescension is indescribable. I'll give an example. My wife's weight has ballooned due to thyroid issues that have come along in addition to or perhaps as a consequence of the various other issues. Another trouble that was labelled "fine" by a GP, only to alarm another one who prescribed more medication. This GP said, without bothering to look any further into the situation, that we need to eat less. How insulting! We actually eat very well and have recently changed to follow a more vegan diet. We have counted calories, weighed meals, calculated macro-nutrient ratios, timed consumption of foods to suit the body's wake and rest cycles, exercised (up to the point that the ailments made movement so painful that even walking is sometimes not possible).

The doctor then went on to sell (and I mean sell) a fancy new drug called Saxenda. The way she spoke of it, you could tell there was some personal gain in it for her. We actually voice recorded the consultation as evidence. The drug comes with a fancy welcome pack with a box that has a magnetic lid. Inside are glossy brochures with smiling faces. Just like a pamphlet from a prestige vehicle showroom.

The doctor could not peddle this enough. Apparently all her family are on it and they are now super models. It costs hundreds of dollars a month and she wouldn't talk about side effects. Then, she said, that you could simply get a stomach band.

WHAT!?

To recommend radical surgery and further increase the stress on the body and reduce quality of life is insane, especially when bands are designed to stop those who simply can't avoid eating excessive quantities. We'd already told her that we eat very little and are particular about quality, so restricting the ability to eat large quantities would not impact the situation at all. I'd call that completely negligent.

We continued with our folder (yes we have binders of medical information, test results, consultation notes etc. that we've accumulated over the years) and produced the positive test for the Borrelia bacteria that was produced by a labroatory in Sydney. That was a costly and involved exercise in itself. Urine and blood had to be collected, refrigerated and transported via medical courier to Sydney where the tests were conducted. The doctor simply dismissed it saying "Lyme isn't native to this country".

I don't normally behave like this, but I could have jumped over her desk and ended her ability to inappropriately practice medicine then and there, such was my fury. Japanese people aren't native to Australia either, yet they exist here. Income tax isn't native to this country yet it exists here. What we were dealing with was a faith based religion, not a dispassionate application of the scientific method.

Why bother ordering new tests if she was simply going to dismiss the findings in cases where they conflicted with her "feelings" of reality? After protest, she reluctantly wrote in her file "Lyme like symptoms".

I'm now at the point where I feel like a fundamental change in course is required. I'm not opposed to moving country. I'm not opposed to anything really, in the pursuit of any increase of life quality for my wife. Now I believe that our suffering has only been exacerbated by doctors and the medical profession with their preconceived conclusions and rigid dismissive thinking. On top of that, I can't begin to describe the tens of thousands of dollars that have been sunk into our pursuit of health. Naturally, the state taxes us to redistribute our wealth leaving us with only limited funds to, you know, try to get through a night without screaming and moaning in pain.

I think that from now on, if an individual has the letters M.D. after their name, then they are not worthy of consulting on our case. I am now in desperate search for perhaps other suffers who have found natural or unorthodox methods of repairing the body. We are making arrangements for international consultations with well studied individuals who hopefully can provide us with some options because, frankly, life is bleak.

My wife hasn't had a pain free day since being a young school girl. Just to experience what a few hours in the absence of pain feels like would be a gift I'd love to offer her. She sometimes writes of her struggles, physical and emotional on her blog at @beulinator if you're interested in following in more detail. This has been an exercise for me in getting some thoughts onto the blockchain for posterity and clarifying in my mind how desperate times require desperate measures.

Thanks for for reading the frustrated ramblings of a loving husband and I wish you a pain free (and doctor free) day!

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