My Health Update & A Call for Collaboration in
Improving Care for Those Suffering
Before I dive into this, let me be clear that this page is me learning out loud, in real time — documenting what I’m uncovering, who I’m speaking to, what I’m investigating, and what I wish someone had told me years ago.
if you are on a similar journey, I hope this helps you move faster than I did.
If you’re a clinician or physician reading this, we need you (truly).
My hope is that as I navigate this, I can somehow help reduce timelines and suffering for other humans in the same boat.
Connecting the Dots in a Lagging System
I'm going to share a little bit of my backstory here so people understand the lengths that we currently have to go through in order to get diagnosis in a system that is without a doubt lagging behind.
Further, I also am going to include the parts of my story that I believe make it obvious that we need to be looking at the human in front of us an integrated system rather than observing and treating the body through isolated pigeon holes.
I personally had over 15 years of symptoms and had seen 14 specialists, 5 family doctors, countless ER doctors, 2 functional medicine practitioners, and 2 naturopathic doctors. None of these practitioners were able to provide me with the diagnosis or give me answers.
Many of you have been following my health journey very closely ever since I went to the United States one year ago after learning more about the autonomic nervous system through courses with the Postural Restoration Institute.
It was on that trip that my “neuro rehab journey” began, and I got many of the answers that I had been looking for regarding some of the issues that I had been having.
They uncovered various unresolved issues from the traumatic brain injuries that I had had over the years, including:
How my brain was not processing visual information correctly.
That I had vestibular system dysfunction.
That I have trauma induced instability in joints that your brain monitors very closely (the ones that hold your skull on your neck, which are in close proximity to the brainstem).
Each of the above was anchoring me in a chronic state of sympathetic nervous system activation (or “fight or flight”).
It was on that trip that I got my “neuro glasses” (made for my brain rather than my eyes) and mandibular orthotic (a sensory tool to give my system & neck a sense of stability) and began retraining my brain to process sensory information.
Only when I received those tools did the neurological tension in my neck and spine reduce and range of motion improve (immediately).
However, I had already been living in that chronic state of neurological tension and autonomic nervous system dysfunction for decades.
I knew I still had a lot of work to do; however, by observing and listening to my body, I could also tell that something else was still flying under the radar.
While my ability to move my body improved, what persisted was:
Altered blood sugar responses
Abnormal hormones
Exaggerated immune responses
Exaggerated inflammatory responses
GI issues that did not respond to diet and presented like obstructions
Cyclical abdomen, pelvis, and joint pain flare ups
New hemorrhagic cysts
Exaggerated peritoneum pain after cyst ruptures
Daily hiccups and diaphragm spasms that would return when the above flared
Absolutely nobody was giving me any answers on these symptoms.
Further, after getting food poisoning while working in Bali while my body was simultaneously having a very strange response to blood in my abdomen, all of my symptoms got much worse and were no longer manageable.
“Self-Study” & Connecting the Dots
I wasn't getting any answers, and the ones that I was getting simply didn't make any sense to me, so I:
Made a list of all my symptoms over the years, in the order in which they started.
Wrote down all of my observations about my body, which were not necessarily symptoms but things I knew both logically and intuitively were not normal.
Reviewed 1.5 decades worth of my blood work, all organized into a spreadsheet where I could see patterns.
Reviewed every single radiological report, biopsy report, colonoscopy/endoscopy report, gastric emptying study, functional medicine hormone report, and microbiome study I've ever had done.
Eventually I came across the condition that the advanced ultrasound (that I'll soon dive into) would later confirm that I have.
Misunderstood Pathophysiology
Once I really started investigating this condition and realized that myself and every health care practitioner that I've ever worked with all clearly misunderstood it, including how:
It can contribute to everything I listed above.
It’s not a local issue, it’s systemic.
It can physically spread to areas like the diaphragm and lungs.
It impacts the immune system, hormones, metabolism/insulin , digestive system, nervous system & brain.
It can now be diagnosed without surgery.
Research also shows many cases have:
Reduced natural killer (NK) cell activity
Overactive inflammatory immune cells
Elevated inflammatory cytokines
Altered macrophage behavior
Further, the immune cells fail to recognize abnormal tissue or lesions.
This gives abnormal lesions a chance to “fly under the radar” as the body thinks they are normal.
These abnormal lesions can then develop and thrive in the abdominal cavity.
Meanwhile, these lesions have a higher numbers of activated mast cells within them, which dump the following into the abdominal cavity:
Histamine
TNF-α
Other inflammatory mediators
The Brain Injury Connection
We know with certainty that the 14 instances of traumatic brain injuries and decades of unresolved sensory issues following kept me in a state of autonomic nervous system dysfunction and sympathetic dominance.
What I did not know until recently is that this coincidentally creates/contributes to a perfect internal environment where lesions for this condition to develop and thrive.
Local Medical Recommendations
Following learning all of this, I ended up in the emergency room after having my second hemorrhagic cyst rupture.
This resulted in abdominal muscles that were very painful, I was unable to sit/stand upright, laugh, or cough without abdominal pain & muscular wall spasms. I had an inflamed bladder (no UTI), inflamed bowel, halted GI motility, a large apprehensive bubble that felt “unstable” in my abdomen, and a bowel that felt (to me) very physically “stuck” in my left colon.
They did a CT scan with contrast, as well as an internal and external ultrasound, which all confirmed another hemorrhagic cyst rupture causing bleeding and chemical irritation within my abdominal cavity.
However, they were unable to find anything else and they assured me that this condition I was in the process of self-investigating was “a far reach.”
They advised that I cancel my trip to London as I was unlikely to have that condition, which was later reiterated by a gastroenterologist that I consulted with two days before flying to London.
A Side Note: SMAS Syndrome & Nut Cracker Syndrome Awareness
One thing that the CT scan in Bali did comment on was that I had lost mesenteric fat and had abnormally low mesenteric fat.
For most people, this is not a significant finding; however, for me, it's actually quite relevant and explained a lot of my issues in Bali.
Years ago, I underwent a series of investigations trying to determine why I had delayed gastric emptying among many other gastrointestinal symptoms.
I was teetering on the edge (from a measurement standpoint), of having a condition called Superior Mesenteric Artery Syndrome (SMAS) and Nut Cracker Syndrome.
If you've never heard of these before and you are a practitioner: First of all, no shame at all. I have many clients that are wonderful family physicians straight through to ICU doctors, and they haven't heard of it either.
That said, please consider reading up on it. In my case, my symptoms began in grade five, and it was not until I was almost 30 years old that somebody sat down and thought to measure that angle to see if I had either of or both of those syndromes. Which, is a common story for those with this/these conditions.
Essentially, it is a rare anatomical variant where the angle between your aorta and major arteries is too narrow, and you lack mesenteric fat (or cushion), which can cause compression on your duodenum, driving gastrointestinal issues, and on your kidney vein, which can drive other issues (in my case, proteinuria).
As a result, need to make sure that I don't get too lean, as it increases my symptoms and makes my symptoms unmanageable. Side note, while the symptoms themselves truly suck and it comes with complications — it gives me an excuse to go to Europe and eat more carbs (win).
I had actually been trying to lean out because after my cyst rupture I had extremely rapid weight gain around my lower abdomen.
In all honesty, I was simply being hard on myself about it by assuming it was related to eating in Italy, even though that made no logical sense. It happened almost overnight, to the point where I one day put my hands on my hips and panicked because my lower waist suddenly didn’t “fit” in my tiny hands like it had my whole life.
I woke up one day and no longer recognized my body to feel it because it had changed so quickly.
I later learned that that weight gain and exact pattern of weight gain is actually associated with the second condition that I did not know that I had.
The lack of mesenteric fat on my CT scan connected the dots on why I had such a strange subset of systems in Bali when I got ill.
It was not just food poisoning that I had, but rather I had eaten an extremely fatty meal consisting of four different types of Wagyu steak. This is SMAS syndrome sabotage, as it is known to cause delayed gastric emptying, especially with fatty meals or very fibrous meals.
Between the extra fatty meal and my having leaned out to a level that is “healthy” for most people but “risky” FOR ME as someone with SMAS Syndrome/symptoms — I put my body in a poor position.
I'm going to spend the rest of this resource discussing the other condition that I did not know that I had until I went to London.
While SMAS syndrome and Nut Cracker Syndrome are extremely rare, this other condition is far from it and is overlooked everywhere, every single day.
Meanwhile, those who have it are also being given outdated information and misinformation from health care providers causing many people to suffer unnecessarily or leaving them in a position where they can't make informed decisions, as those providing the advice themselves are not informed.
I want to make sure that I reach back and offer a hand to those people in some way, by sharing my story and trying to accumulate resources for them
Advanced Imaging for Diagnosis in Europe
I ultimately decided to follow my instincts and fly to the United Kingdom to pursue the advanced ultrasound.
Using the advanced ultrasound, the specialist was able to find:
Deep infiltrating endometriosis (DIE)
A map of which organs were involved in the lower abdominal/pelvic cavity
Tethering and compression of my bowel
They also explained to me that the hemorrhagic cysts that I’d been seeing on ultrasound in Canada and had been struggling with since September are a common feature of this condition, which was not the information that I got in Canada.
They also explained that as my hormones have now been improving through my efforts to recover from my traumatic brain injuries in the last year, one of the drawbacks of my ovaries “coming back online” and ovulation starting up again is that I’m now experiencing these hemorrhagic cysts that rupture with ovulation.
Further, that when these cysts rupture, like they did in September and again in February, the associated bleeding in the abdominal cavity can “pour gasoline on the fire” making the situation worse.
Through my own research, I’ve also learned that the hormonal landscape that my brain injuries left me with is also the same hormonal landscape that tends to breed this condition. My progesterone tanking after my brain injuries and staying chronically low while my estrogen was “running wild and free/unopposed”, may have been a contributing or complicating factor.
I need to do more research on all of this yet.
This is simply my understanding of the information I have been given so far and based on the limited time I’ve had to investigate this since I sat down to try to figure all of this out and uncovered that this condition can cause my issues weeks ago.
I will continue to do more reading to try to understand the global systemic picture, and I have reached out for professional insights where I can.
As I learn more, I will share more for anyone else that it can help.
This multi-system condition, which I have held off on naming as I first wanted to create a picture of what it “actually” is before I gave it the label that everyone seems to tie to a “local”, “gynecological or pelvis exclusive” or “menstrual cycle-specific” condition, is a type of endometriosis called deep infiltrating endometriosis (DIE).
My hope is that the information that I put here helps:
Improve awareness of options actual and diagnosis and treatment options available
Improve timelines while reducing suffering for those with this condition
Reduce the number of people who are misinformed about it (which I'll be first to admit was me only a few weeks ago)
Additional Clinical Insights Gathered Through Ultrasound
Here are some additional insights that I gathered from my appointment in London that could be of use to women and practitioners:
They didn’t just see the deep infiltrating lesions.
They showed me that certain organs were not moving when probed with the ultrasound.
Healthy pelvic organs glide and move relative to each other.
For my manual therapists out there, this is similar to how we should see layers of tissue move relative to one another.
My organs were not moving when probed or pushed on. They were “stuck”.
My large bowel was also stuck.
And that explained something I had lived with for years:
They were able to replicate that exact pain unrelenting left-sided abdominal pain that I had in the mornings for years, especially when I had my “mysterious” microscopic lymphocytic colitis. This pain, came back with a vengeance after my first and second hemorrhagic cyst ruptures in recent months.
They were able to “see” what I had “felt”, and point out exactly where things were getting “caught up”.
Seeing that my bowel was tethered in place and that the surrounding area was (according to the report) “partially obliterated with adhesions”, reframed years of symptoms that nobody else could explain.
Accessing Advanced Ultrasound/Sonography Imaging
For anyone wondering or considering this route, I had my exam done at:
Gynecology & Ultrasound Centre, 137 Harley Street, London (UK)
Cost of the exam + consultation: ~$950 CAD (excluding flight & accomodation costs)
Results: They gave me my results in real time as the specialist did the exam himself and explained exactly what he was seeing and showed me everything as he did the exam. He then proceeded to sit with me afterwards to answer any questions that I had — and I had many.
My appointment was at 9am London time on Monday, and I had the results with a full 5 page report/letter to my doctor in my inbox along with the images from the ultrasound by the time that I woke up Tuesday morning in Canada.
Advanced Sonography/Ultrasound Options in Canada
Since returning, I have been investigating options in Canada and I am hopeful that there are at least a few.
I’ve reached out to a few specialized surgeons and care centers that look like they might offer the same advanced imaging.
I am waiting on confirmation on where these options are available and how people can go about accessing them.
On my end, the only option that I was given for diagnosis before stumbling upon advanced sonography/ultrasound through my own research was laparoscopy (surgery).
I'm very glad that I did not have this done.
Not only because that would have involved an additional surgical procedure, extra time off work and simply added even more physical insult/trauma for my body to try to recovery from.
And this would be all to confirm that I have a disease that well trained specialists can see (easily) through ultrasound.
Further, the advice was given in London is that due the degree of DIE that I have, “I should not let a regular gynecological surgeon operate on me”.
Instead, they said that surgery would need to be done by an endometriosis excision specialist specifically.
That would not have been the case had I accepted a general laparoscopy back home, and I would have then been looking at two surgeries and even more physical insult for my body to try to recover from.
Based on what I learned in London you do not need a laparoscopy to diagnose endometriosis.
This just isn’t well known yet. I hope to do my part to change this, starting with this page.
Keep in mind, the ultrasound technique used in London is not a routine pelvic ultrasound.
It requires:
Specialized training and a trained clinician (typically a specialized gynecologist)
An endometriosis-specific protocol
Someone who knows how to assess organ mobility
In terms of imaging options in Canada for this specialized ultrasound, it does appear to be listed as an option alongside MRI for diagnosis for women with endometriosis at the BC Women's Hospital and Health Centre.
The clinic returned my call, but they could not confirm whether they use the exact same ultrasound machine or the exact same specialized techniques that were used in London for deep infiltrating endometriosis (DIE) mapping. It sounds like it is in the same general neighborhood, but is not quite the same exam.
What they did confirm:
They do perform pelvic ultrasound at their clinic.
They look particularly closely at the bowel.
They also perform pain mapping during the scan
They stated they generally only see patients in BC and the Yukon, unless someone is spending a “significant” period of time in BC and has a BC address.
For people in BC, they said referrals are typically made by a family doctor or gynecologist after at least one first line treatment has been explored (for example, laparoscopy, medication, etc.).
They clarified:
It does not require exhausting all first-line options,
but they typically expect someone to have tried and failed at least one first-line treatment before referral to their center.
I am currently investigating some other options in other provinces as well and I will be reaching out to inquire and see if the same ultrasound technique is an optio there, and if so, who it is available to .
I will add more information here as I find it or learn more.
The specialist in London was kind enough to record the entire scan for me, label it, and send it to me.
Here is a screenshot demonstrating how you CAN see, measure, and diagnose deep infiltrating endometriosis on ultrasound.
Thanks to them, I now have an objective way of seeing if the lesions are worsening/improving.
Visceral Insights Gained Through Advanced Sonography
Years ago when I had microscopic colitis, I saw a pelvic floor therapist in Saskatoon for visceral manipulation. I was trying anything/everything under the sun to improve my health and gain insight into whatever was causing my issues.
She performed a pelvic floor exam.
Yes, there was tightness — but it was proportionate to how inflamed my abdomen was at the time. Nothing extreme.
She then did visceral work and told me:
“My descending colon feels stuck.”
At the time, I didn’t understand what that meant.
I didn’t have the clinical picture. I didn’t have the diagnosis. I didn’t even fully understand visceral manipulation therapy.
But now?
In retrospect, it was valuable information.
Information I could have taken back to my family doctor and pushed further with.
So, if you cannot access advanced ultrasound imaging yet — whether due to referral barriers or wait times — know this:
Skilled pelvic health practitioners and visceral therapists may detect movement restrictions that are consistent with adhesions in endometriosis.
It is not a diagnosis. But it may help build your case. In retrospect, this was valuable information.
Accessing Visceral Practitioners
I've reached out to the pelvic floor & visceral clinician that saw me for that appointment as well as another trusted contact who I believe is also an assistant instructor in visceral manipulation courses. Pending their permission, I will include their contact information here (check back later).
I will also be having conversations to see if I can find practitioners who are willing to write supportive letters outlining any pelvic floor or visceral restriction findings that could be consistent with endometriosis, to see if this helps speed referral pathways.
I also know many of you that follow me on Instagram or are clients of mine are also physicians. If you have any insight on information that we could include that might help with this referral pathway, I am also all ears and happy to include it here.
If it helps even one human move faster, it’s worth attempting.
New Diagnostic Options
Non-Invasive EndoSure Test
Right before I went to London, I saw a client of mine who is a family physician in Saskatchewan. She informed me that she had a patient who had received a positive diagnosis of endometriosis by getting an ENDOSURE test done, which came back positive for endometriosis.
She was very transparent and admitted that she had never heard of the test before and still did not know much about it, however she did recognize it as a positive result and it was enough for her to make a referral to a specialist here in Saskatoon for endometriosis. She also informed me that the specialist accepted this as a positive test result and thus accepted the referral as well.
According to their website “The ENDOSURE test uses an electroviscerography system (EVG), an analytical instrument that collects Gastro Intestinal Myoelectrical Activity (GIMA) signals from the abdomen through dry electrodes.”
There was a test available in Calgary at Frami Chiropractic until September 14th but is currently paused while the clinic assesses the business model to see if fits into their practice.
If you are in Alberta or Western Canada and want this test brought back to Calgary, I strongly recommend contacting the clinic and asking to be placed on a waitlist.
Interest drives availability.
In the meantime, it looks like it is offered in Edmonton as well as in Ontario (shown here). I've reached out to clinics in both, or to both clinics; however, I have yet to get a response back.
My (current) understanding:
It can indicate whether endometriosis may be present.
It does not tell you where it is.
I can't promise that every physician or specialist will accept this test or the results. I can only say that I hear that some are and it might be worth looking into. According to the reception staff at the BC Women’s Hospital & Health Center, while they were unfamiliar with this test they did state that they would accept it with a family doctor’s referral letter as well.
Or, if you are simply trying to get an answer on if you have endometriosis or not so you can start taking steps forward, you might find it of use to you as well.
Magnetic Resonance Imaging (MRI)
It seems to be that the most up-to-date surgical centers are using a combination of advanced ultrasound as well as MRI for pre-operative assessment.
From what I understand so far, MRI is useful for:
Mapping deep infiltrating disease
Bowel involvement
Diaphragmatic involvement
But it must be ordered correctly and read correctly.
Questions I’m currently investigating:
Does the MRI need to be ordered in a specific manner to visualize endometriosis?
Do we need radiologists trained specifically in endometriosis protocols?
Is it about the hardware, or the interpretation?
If you are a radiologist, surgeon, or are familiar with proper MRI protocols for endometriosis in Canada, I welcome and appreciate your input!
This section will be updated as I learn more.
Surgery Decision Making
I truly have so much more reading to do to understand this condition as a whole, as well as to understand what surgery can and cannot offer me.
To date I've been told that the only treatment options are:
Inducing menopause
Hormonal birth control to stop getting a period
Excision surgery
However, it is not lost on me that the same people that I'm hearing that from were also the same people that did not recognize this condition and/or were providing me with outdated information earlier.
My Current Logic
I do not believe that it makes sense for me to jump to surgery when I don't yet have all of the answers on exactly where the endometriosis is within my body.
My presentation suggests that it is quite possible that I have deep infiltrating lesions in my upper abdomen or within my diaphragm.
If this is the case, I would need a different surgical team than I would if it is only present in my lower abdominal cavity or pelvis.
Further, the SMAS/Nut Cracker Syndrome adds a layer of complexity that needs to be closely considered. Especially if I might need a diaphragm resection.
There is a lot to be considered overall.
For now, the question right now is not:
Do I get surgery or not?
Rather, for me, the question right now is:
How on earth does somebody in Canada access the type of MRI and specialists needed in order to investigate if these lesions are present in the upper abdomen and diaphragm.
Once again, I welcome any and all information and resources on this.
I know it can be done and specialists internationally that are leading the way in this condition will not perform surgery until they have both the advanced ultrasound and MRI complete. However, again, we seem to be lagging behind in Canada.
Only once I have that next piece of the puzzle can I know which (and how many) surgeons I would need on my surgical team if the results & clinical picture suggest that surgery can I make a truly informed decision.
In the meantime, as I suspect that will not be something I can solve quickly, I am simply trying to better understand:
The pathophysiology of DIE.
It’s systemic nature and the autonomic nervous system overlap.
Exactly what that internal environment this disease thrives in.
How I can also work on inducing positive adaptation to improve that environment in such a way that inhibits this condition from thriving.
I can only assume that doing so will:
Give me an idea of how much I can improve my health conservatively.
Set me up for a better result & recovery if I do need surgery.
Improve the odds of full remission post-surgically.
Attempts to Address the Bigger Systemic Issue
It doesn’t serve me or my body to spend time being angry or upset about how long it took me or how much suffering I had to endure over the years to begin to get answers.
I’ve already gone through this and that cannot be changed. My hope is to funnel my time and energy into figuring out a path forward and ensuring that anyone else behind me get access and get the help they need much sooner.
I will eventually compile a list of every doctor, specialist, and practitioner that I have seen over the past 15 years.
I plan to remind them of my case and share resources — not to attack, not to shame — but to help improve pattern recognition for the next woman.
This is not about tearing down the system.
It’s about improving it through a ripple effect.
I know many of you that follow me or are clients of mine are physicians and I welcome your input on how I can best go about this to increase the odds of positive change.
If even one physician considers this and helps someone get the diagnosis or treatment they need , it will be worth it.
This Page, Over Time
Right now, this is my way of updating you guys on my journey, as I know many of you have been asking on Instagram, and I just don't have the capacity right now to be making a ton of Instagram stories or posts.
As I navigate this disease, I also am, and will continue to, operate my physical therapy practice and Operation Human First, as they both bring me a lot of fulfillment and joy.
Later, as I learn more and solidify what I learn, and hopefully accumulate more resources from anybody that can help, this page will be condensed into:
A structured Canadian resource list
Imaging access pathways by province
Resources or tools I find helpful in treatment/management
Surgical options
Self-pay routes
Referral tools
Advocacy guidance
For now, if you want updates on my diagnosis and what happened in London, this page will house it.
If you know someone struggling — send them here.
If you are struggling — you are not crazy.
And if you are a clinician reading this:
Please consider the above in your next assessment.
Where I can Improve as a Practitioner
Surgical Incisions and Laparoscopic Recovery
This whole thing has been very eye-opening for me both as a patient and as a practitioner.
I see various ways that I can improve as a practitioner, and I've noted all of them and will be circling back to many of them as my physical condition improves.
In the meantime, there is one very specific one that I know I can start acting on immediately.
I once had a patient come to see me for issues related to his surgical incision after an organ donation.
It was actually the same patient who started the trend of playing jokes on me by hiding rubber ducks in my facility, which many of my local patients have carried forward.
In retrospect, the rubber ducks that my clinic is now absolutely covered in should have each been a reminder to circle back and follow through on what I told him I'd do.
I had educated him on how the layers of tissue that we “slice” through need to be able to normally “slide and glide” relative to each other for proper nerve conduction, lymphatic flow, circulation, muscle activity, and so on.
Further, how this can become altered post-surgically resulting in pain, fluid accumulation, altered sensation/muscle activity, etc.
His symptoms fully resolved with treatment to his surgical scar. Unsurprisingly, for someone who is an organ donor, his first thought was how he could help all of the other people that would benefit from and were not informed about scar treatment.
I wrote a few letters for him to assist him in trying to improve awareness around this in the organ donor communities and organizations. However, I also told him that I would try to do a better job of informing people that this is something to consider post-surgically and that this is also something that I treat myself if anyone ever needs.
If there is anyone locally that is recovering from a laparoscopy specifically (or surgery in general) who needs treatment, please feel free to contact me. Regardless of if I am booking months in advance.
I will do everything I can to set aside time to serve this population better than I have.
If you ever find yourself needing surgery, I hope the bit of information above is helpful to you.
Further, if you are not local to Saskatoon and you need this treatment, I will also place a link here for a find a provider database.
For reference, training that I found most useful for that treatment specifically came from an FR release certification; however, I have noticed they do not cover this in every seminar.
As a result, I do recommend reaching out to the FR release practitioner to see if this is something they have experience with when you go to book.
That is all I have for now, I’ll update this as I can/when I can, and as I learn more.
With gratitude,
Alex
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