11/04/2015 12:13 EST | Updated 11/04/2016 05:12 EDT

Living With Unexplained Chronic Pain Is A Nightmare

At some point, every person in my life has made a suggestion that mirrors some of the professional opinions I've heard over the years: that the pain receptors in my body could be alarming off to "false threats." This made me fight a new battle: one where I began doubting myself.

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Pain in back of women on gray background. Caring for the female body. Red dot

On Thanksgiving weekend my husband rushed me to the emergency room in excruciating pain that emanated from the lower-left side of my back, around my side, to beneath my hipbone. I didn't know what was going on because the pain I experience daily never spreads from around my tailbone.

For the past 36 months -- three years -- I have suffered with unexplained back pain that has been localized to one specific area of my back, roughly an inch away from my tailbone on the left side of my body.

Living with chronic pain is a nightmare of sleep deprivation, being incapacitated and feeling like your body is constantly rejecting itself. Going outside for the limited amount of time my body can handle, I hear micro-aggressions from strangers about how I need to "shape up" because I'm too young to have a disabling condition, or how unproductive I am for not being out in the work force.

People who know about my disability ask when I am going to get pregnant, which means they don't understand that I can barely hold up my own torso let alone carry a child. At some point, every person in my life has made a suggestion that mirrors some of the professional opinions I've heard over the years: that the pain receptors in my body could be alarming off to "false threats," indicating that my mind is preventing my body from relaxing enough to realize that my body is medically sound.

This made me fight a new battle: one where I began doubting my health.

Knowing that my mind latched onto dermatillomania at a young age, I also knew that it was possible that my back could have remained in a spasm after a fall three months before October 2012. By April of 2013, when I couldn't handle the pain anymore, a CT scan was ordered and I later learned that there was a slight scoliosis located in the area that's in pain.

I begged my GP to send me for an MRI, but since I was not an urgent case, the wait can be as high as two years in Halifax, Nova Scotia. For this reason, my husband took the day off of work so we could drive to Antigonish where the wait list for an MRI was only six to eight months because I couldn't bear the thought of being in this much pain for much longer.

After years of seeing chiropractors, massage therapists, physio therapists, a pain clinic, an osteopath, and an orthopedic surgeon, I was told by the ER doctor that the radiologist in 2013 did not include in my CT report that I had scattered diverticuli in my colon. With daily struggles of limited movement in my left leg and inability to stand for five minutes at a time, I saw this diagnosis as a step closer to answers.

Later, it sunk in that one radiologist's choice to not include the diverticulosis diagnosis in my report may have cost me two and a half years of my life that I can never get back.

I was told that the reasoning behind why the radiologist may have decided to omit this information could be because this disease is usually asymptomatic. While Googling this disease, I learned from various websites that Diverticulosis is uncommon in patients under 40 years of age while one-third of the population will have it by the time they are 60. I was 26 when my CT presented evidence of this disease.

Also, when it is present in younger people, it is usually more aggressive. Thirty percent of diverticulosis sufferers have flare-ups which can lead to diverticulitis, what the ER doctor diagnosed me with and gave me powerful antibiotics for.

What right does a medical professional have to not document any abnormality from a scientific scan? What does this do to future research and statistics when professionals choose to dismiss evidence? How are correlations to other health concerns made without evidence-based data when sufferers don't even know they have it? At the time, I could have at least been told to include more fiber in my diet, which is what is often recommended for this condition.

After reading the report my GP gave me on Thanksgiving weekend, I learned that the diverticuli is scattered throughout my sigmoid colon. Curious to freshen up on my basic biology, I found diagrams that show its location to be curving in an S-shape upward into the rectum area -- specifically, the lower left side of the body. I have doctors telling me that there is no possible connection between my chronic pain and this condition, but I've learned that nerves cross each other and pain can be referred from another source in the body. It also sounds possible that a bulge from the colon could hit one or more of these nerves, causing chronic pain symptoms.

This constant pain has also taken away elements of precious moments for me. I was unable to hold my cat when he died because my body wasn't strong enough. I couldn't stand face-to-face with my husband at the altar exchanging vows. After getting injections, electrical stimulation needles, shock wave therapy alongside conventional treatments for pain, I still cannot lie down on my left side without agony. My left glute is inhibited and has deteriorated, and I "count my spoons" to make sure I can make it through each day with the minimal amount of pain possible.

I want to pursue a career.

I want to be able to withstand a trip to the grocery store.

I want the left side of my body to be mirrored to my right side.

I want access to a reliable, timely, and non-judgmental healthcare system.

Now, I wait what I was told may be another year for a colonoscopy and specialist's appointment. If I need surgery to remove the diseased parts of my colon, I will then be put on another waiting list. The worst case scenario is that a colonoscopy, which I would have looked into with my doctor 2.5 years ago, reveals an underlying reason for the pain -- the big C-word.

The longer the wait, the worse other conditions with similar symptoms can become and I now have three years under my belt. While I'm trying not to let my mind wander this path too often and believe the likelihood of cancer is low, it is scary to think how many other people have experienced negligence in medical documentation (and waiting lists), all because one individual in the field of medicine decides to leave out findings in a scan. I deserve to find out the full details of my condition, even if it isn't related to my chronic pain.

Hopefully by October of 2017, this will be resolved and I can pick up life where I left off after five years of going in circles trying to get a diagnosis. In the meantime, I will be waiting. It's all I can do.


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