The Reuleaux of my health

The meaning behind the logo

For the last 20 years I have been trying to better understand and ‘treat’ my endometriosis with surgeries, birth control pills and pain medications. In the latter years I started to get wiser about the effects of nutrition and thus started to explore dietary solutions to mitigate the symptoms associated with endometriosis, namely the inflammatory diet. 20 years later, I found out that I also have ulcerative colitis, a form of IBD (Inflammatory Bowel Disease) that was present for years without rearing its ugly head. The triggers expressed themselves as common symptoms associated with endometriosis (bloating, diarrhea, pain/discomfort) that lead most endo women to be (mis)diagnosed with IBS (Irritable Bowel Syndrome). All it took this time was one trigger – perhaps a glass of red wine – that flared the colitis so badly that it was enough to show up in stool workups and a colonoscopy. To understand how they diagnosed me for UC see my article here: Part 1 and Part 2

While endometriosis is not an autoimmune disease, there are a number of co-morbities, suggesting women with endometriosis may be more prone or susceptible to developing autoimmune diseases. Likewise, 25% of people with one autoimmune disease are likely to develop a second autoimmune disease. Part of that equation is genetics, some of it may be due to epigenetics (the lingering genetic effect from your ancestors), some of it of course may be environmental including the things we eat. Yet while there are billions of dollars going into understanding the mechanisms behind autoimmune diseases, there are not enough doctors who specialize in understanding the underlying causes of inflammation,… as a whole.

Up until recently my life was regaining momentum; with another endometrial excision surgery behind me in March of 2018 and rapid improvements through biologic treatment for my Ulcerative colitis. But then on July 1st 2018, I woke up knowing something was wrong. I had not eaten or drank anything funny the day before, I didnt overly exert myself, but my hormones were off, my spoons were run up, and I started to feel achy in my upper abdomen. Needless to say this pain went from a 1 to a 9 throughout the course of only a few hours and I ended up back at the hospital for what was the beginning of the journey into the investigation of my idiopathic pancreatitis. Note that I have not been definitively diagnosed with anything yet, but the doctors are puzzled as to whether they are seeing true pancreatitis, autoimmune pancreatitis, an abnormality somewhere along the upper digestive tract or if this is endometriosis on the pancreas (spreading from the known implants on my diaphragm). You can read about this journey in Part 1, Part 2 and Part 3.

What my life now comes down to is a Reuleaux triangle  – the middle part of a Venn diagram (the fatter, black outlined ‘triangle’) – where I can reduce my three diseases down to its commonalities and start to treat them together. For the first time in my life I can start thinking about the big picture and stop trying to interpret all the different nuances of each of the diseases. While each of them have their particulars (for example NSAIDS are great for endometriosis but increase ulcer bleeding in colitis patients) that need to be well understood, perhaps looking at whats causing inflammation for one disease could assist with reducing the inflammation associated with the others (aka a holistic view).

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My Reuleaux Triangle

The best (hidden) meaning for the logo though, is the perfect triangle in the middle of the reuleaux triangle – the Greek symbol for ‘change’. Honey, if there is one thing I am determined to do from this day forward, it is to change. Not my core being (I like who I am) but …

Change my mindset of how to look at these diseases.

Change my approach on how to combat these diseases.

Change the way I feel after a doctor tells me I’m insane or that I dont have any options.

Change the way I look at, and feel about, my body – the one I believed was flawed.

Change the way I carry myself.

Those are hereby here in writing so that if I forget my way, I can come back to remind myself.

Needless to say, through my journey of targeting my reuleaux triangle I hope I can continue to bring knowledge and experience to others who are diagnosed or looking for answers for undiagnosed autoimmune diseases and chronic illnesses.

Is it rare or medium rare?

Back in 2012 when I had my first surgery to diagnose and treat endometriosis, my surgeon was able to ablate the lesions from my Fallopian tubes, but he was not comfortable working with the lesions on my bladder. For five years these implants continued to grow and spread, until my recent surgery in 2018 where endometriosis was excised from my bladder, colon, and ribs. Sadly, there were implants on my diaphragm that my surgeon did not feel comfortable removing as she was not trained in working with the thoracic cavity. In these cases of thoracic endometriosis, only a handful of doctors in the world are skilled enough to work side by side with a thoracic surgeon to carefully ablate the implants using a technique called VATS (video assisted thoracoscopic surgery). Thus, after waiting and suffering 5 years between surgeries to remove the endometriosis (for a total of 20 years) there were still residual implants left inside my body that I knew was going to spread eventually.

A few months after my surgery I went into the hospital with excruciating abdominal pain. Upon admitting me into the ER my blood work revealed elevated lipases at 2000. A repeat blood work showed the same spike and so I was admitted as an in patient to continue doing more tests. That story ended quite quickly as is the beast of the medical system: two doctors claimed I had pancreatitis but the more senior doctor disagreed and sent me home. I suffered – and continue to suffer – 2 whole months with this chronic debilitating pain. It so turned out that after around 7 weeks I started to exhibit symptoms of a colitis flare and was going to pull through at home until I had these weird heart pains which were new for me and fairly frightening to say the least. Skipping ahead to when I got to the ER, my lipases were at 4000 and this alarming number enticed the doctors to admit me once again, even though this wasn’t what I came into the hospital for. Back on the pancreatitis train we went, proceeding with blood work, a chest X-ray, fecal testing, two endoscopes and the list goes on. While my lipases continued to bob all over the place during my 7 day stay at the hospital, my colitis symptoms subsided and the mystery continued. This visit brought on the interest of the general medicine doctors and the gastroenterologists who ruled out acute pancreatitis (I don’t drink and I don’t have a gallbladder to form gallstones: the two main causes of acute pancreatitis). They failed to fully rule out autoimmune pancreatitis as my IGg4 levels were normal (as is the case with type 2, not type 1). They also failed to rule out EPI – exocrine pancreatic insufficiency – a disease in which your pancreas lacks the fundamental enzymes to break down foods into basic nutrients and thus your body does not absorb nutrients from foods you eat.

Along the way I had suggested that since none of the scans showed any abnormalities in the pancreas, any blocks or any stones, that perhaps this could be endometriosis on the pancreas, making it angry, and causing it to spike in lipases. The theory was not thrown out. In fact, the two teams of doctors thought it best to bring in the Gynaecological team for a consult to see how plausible this could be. First came the residents who stated this was an interesting theory although the endometriosis on organs such as the pancreas and liver were too rare. I begged the question “is it more rare to have it on my organs or on my diaphragm?” – needless to say the answer was not provided. The second step was to ask the attending doctor what he thought about this theory. Instead of having a voice he played the politically correct card and deferred to my endometriosis specialist who unbeknownst to me is the head of gynaecology at the hospital. Here is what she said:

I have never seen endometriosis on the pancreas in all my years of practice and I strongly believe this cannot be the case. She would be written up in a case study. I have told the patient that she should be on Lupron to use as a diagnostic tool to determine whether the pain she is having is in fact associated with endometriosis. I now, however, think that we should hold off on lupron as it could confound any other finding for this cause of pain, and so we will back out of this case until the other departments have run up against a wall,… and then we can bring lupron back on the table.

That, my friends, was the last time I heard from my endometriosis specialist aka my quarterback. I was livid. I was exhausted. I felt denied and betrayed all at once. The other piece of this story is that she refused to refer me to THE ONE AND ONLY doctor in Canada who is qualified to remove endo using VATS until I performed the lupron diagnostic. She never came back onto the case, and I fired her. Because, I can!

Today I continue to suffer from the abdominal pain, in the comfort of my own home, and have a few extra tests booked as the doctors are curious and excited to determine what is going on with my body. I cannot say I was denied proper care because the doctors at the Vancouver General Hospital have always gone above and beyond. What I can say is that while endometriosis on my pancreas may sound like a hilarious and rare probability, I have since been in touch with a handful of endo sisters who have either suspected or confirmed endometriosis on their pancreas and/or liver. So again, I ask you, is it really that rare, or is it medium rare?

Endometriosis is a disease that effects 1 in every 10 women. Some say it is genetic; others attribute the disease to early life trauma, and in some cases we hear cockamamie theories such as “women bring this upon themselves by having sex too early”. Women at the age of 14+ begin seeing a gynaecologist for yearly Pap smears. These doctors are specialized in the reproductive system but so few of them understand endometriosis. There are highly specialized endometriosis surgeons who have spent a great deal of time understanding how this disease spreads and furthermore how to eradicate the endometriomas from organs and spaces outside the womb. These surgeons, albeit experts in the field, may or may not be able to work with certain organs such as the bladder, the colon and in some cases even the diaphragm. Even worse, a very small number of endometriosis surgeons are trained in excision surgery; they continue to perform ablation surgeries that simply cauterize the lesions. The point is there are very few resources dedicated to better understanding this disease, and very few professionals who are specialized in the field of treating endometriosis.

If you are looking for proper care for your endometriosis please ask the questions you need to, to determine which piece of the puzzle your doctor is able to take care of. If your gynaecologist does not know how to treat endometriosis make sure they refer you to an endometriosis specialist. If a surgeon wants to perform surgery to treat the endometriosis make sure they are conducting an excision surgery – this is the only type of surgery that will remove the lesions and give your body a fighting chance.