#endojourney: About Last Month…

In my mind, May was going to better than April. I would get back to working semi-regular hours, enjoy a birthday dinner for one of my ride-or-die ladies and possibly go on a couple of dates with my main squeeze, Ciarán.

Instead, reality hit.

Professionally, I only managed to work a few days. Personally, I was fortunate my therapist held phone sessions, for these past months have been mentally taxing. I was able to join the birthday dinner, which in turn was the only date Ciarán and I spent outside our apartment last month. Medically, I had a couple of specialist appointments and underwent a CT scan as the dizziness and nausea kept me isolated on the couch for most of May.

There have been hours – more than I’d care to admit – spent watching television. From classics like The X-Files to almost everything in the HBO library to Bravo’s finest reality TV shows. Turns out, I’d much rather get caught up in the ridiculous misadventures of the cast of Vanderpump Rules than my reality. Not to be confused with avoiding or running away. Trust me, after five surgeries in eight years, I am aware of my situation. I’ve had no other choice but to be.

It is incredibly difficult to concentrate once the bottomless nausea pit in my stomach radiates up my esophagus where it nestles and settles in the back of my throat. The dry-heaving and light-headedness have left me in this odd state where I’m almost afraid to do anything, and yet, hate myself for doing nothing.

While writing helps combat the harsh spiraling thoughts, I still enter my shame cave of depression some days. I’ll admit I thought July 26th, 2018 was going to the last day of my endometriosis journey. I believed the hysterectomy would be my fifth and final surgery. I’d finally get my life back- the life that has been in constant repair since I was forced to leave Brooklyn in 2010.

Five surgeries and almost nine years after my diagnosis, I am still waiting for some semblance of control over my life.

On May 9th, I had a call with my endometriosis specialist and surgeon, Dr. Paul Yong, to discuss my CT results. Before revealing the results, he asked if my family physician had contacted me. Yet, I’d recently fired, my family physician – Dr. Incompetence.

Luckily, Dr. Incompetence was not someone I regularly saw as it became clear he was out of his element, which is not uncommon for those afflicted with chronic health conditions. The last time I saw Dr. Incompetence was when he questioned the legitimacy of my hysterectomy for a second time.

Let that sink in for a moment.

He questioned the legitimacy of my hysterectomy.

Twice.

I guess in his mind, I’m merely a vapid thirty-five-year-old woman who didn’t realize chronic nausea can only be one thing – pregnancy. I’d brought my surgery report along with the before and after photos to the appointment. The before photos showed my uterus retroverted as though to be taunting the sutures put in place months prior, to resuspend it into an anteverted angle. The after photos showed a hollow pelvic cavity covered with scars from my endometriosis excisions past. The last frame showed my womb, fallopian tubes, left ovary, and cervix laying fully intact in the palm of one of the surgeon’s hands.

So, after he asked me for the second time whether or not I had taken a pregnancy test due to my unexplained nausea, I opted to express my opinion. I don’t think he found my explanation on how it’s impossible to conceive without a cervix and fallopian tubes – let alone without a womb – all that charming. Or, perhaps it was when I reminded him he was the one who went to medical school, not me. One can never really be sure.

He did not apologize for his incompetence and insensitivity. Plainly stated, it wasn’t that he didn’t believe me, he simply cannot take people at their word. He continued explaining how my surgeon’s office needs to send him the surgery report as I could be showing off my photoshop skills. I deflated. Those words summed up what I’ve fought years for with the medical system – believability.

My symptoms had been dismissed too many times. I had no choice. I fired him. How could I work with a doctor who did not believe me? No dice. I later found out that Dr. Yong’s office sent the surgery report. Twice. Dr. Incompetence and his staff misplaced it. Twice. I will no longer allow doctors to dictate my future by questioning the validity of my symptoms.

Dr. Yong informed me the CT scan showed some cysts around my remaining ovary but otherwise, my stomach and pelvic region looked unremarkable. His voice lowered when he mentioned the results of my chest scan. His words spilled out over the phone.

Aberrant Subclavian Artery.

I kept repeating the words over and over in my head. Aberrant Subclavian Artery. I didn’t want to forget the words.

Neither of us remembers whether he said they suspected it was the left or right artery that was pressing against my esophagus, causing my nausea. He explained it’s a rare birth defect and since I have double ureters (another rare birth defect) it is not uncommon to have other developmental deficiencies. The only way to definitively diagnose an aberrant subclavian artery is with a barium swallow test. As of last Friday, Vancouver General Hospital has a three weeks backlog for barium swallows. Fingers crossed I hear this week when they’ve scheduled my test.

If diagnosed with an aberrant subclavian artery, I will be referred to a cardiac surgeon to discuss treatment. Once patients become symptomatic, the primary treatment is open-heart surgery. The surgeon will adjust and move the artery off of the esophagus. No big deal. Easy as pie.

While there are only a few medical journals online, I’m not borrowing worry about possible open-heart surgery. Due to the planner in me, though, the idea is floating around in my stratosphere. Mostly so I’m prepared and not caught off guard if diagnosed. I prefer to think of as many possible outcomes; for instance, is there a chance that I’m symptomatic now because there’s endometrial tissue adhering to either my esophagus or artery? Dr. Yong explained finding endometrial tissue on either the esophagus or artery is very rare. However, as the days go by and my nausea worsens, it feels I continue to fall on the wrong side of the statistic. At least I am consistent.

Not even two full days into June and it’s already quite reminiscent of the last few months. Ciarán is busy packing in preparation for the move into our first home while I am beached on the couch watching The Twilight Zone to distract from today’s overwhelming nausea that makes me feel like a prisoner in my own body. Last Thursday night, Ciarán and I walked the five minutes to the grocery store. At first, even with nausea rising, I was able to browse the aisles with a bit more ease than previous trips. Somewhere between grabbing the pickles and walking to the register, the dizziness hit. Ciarán, who noticed right away, clutched my waist to help steady me. Having been in this situation many a time, we knew it was time to get me home. I had pushed myself too much.

I remain somewhat hopeful this month’s upcoming barium swallow, endoscopy and colonoscopy along with the neurologist appointment and my new family physician, will help clarify what is causing these symptoms. Stuck waiting, I’ll do what I’m able on the good days, and on the bad days, I’ll distract myself with those guilty-scandal-filled shows.

Tell Me Your Thoughts!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Create a website or blog at WordPress.com

Up ↑

%d bloggers like this: