As we first started reaching out to the community Erin was always eager to support us in any way, all the way from the West Coast. We caught up with Erin as it was finally time to share her story. Erin can you introduce yourself?
Hello, my name is Erin Fernie and I currently live in Vancouver with my husband, Ciarán and our two cats, Boris and Ozzie.
I remember the first time I really felt pain. I’m talking teeth-clenching, keeled over, white knuckle kind of pain. It was new and different from the pain I’d previously experienced with the two concussions and literal thorn in my foot.
I had only been thirteen for a couple of months, so when I first felt the sharp pangs shoot across my lower-quadrants, I thought to myself: Ok, Erin. This is it. I am finally going to be a participant in the pads versus tampons debate that echoed throughout the girls’ washroom. However, there was no blood, only the mind-numbing-red-hot-searing-pain which would accompany me to this day.
The pain made it difficult to stand-upright so, my mom took me to the hospital where my abdomen was pushed down upon as though it were soft, pliable dough ready to be kneaded. The doctor dismissed our concerns for appendicitis as I did not fit his ‘textbook definition’ of screaming and hitting his hands away, instead of simply crying when he applied pressure. So, he sent me home with an appointment for an ultrasound the following morning as my white blood cells were elevated showing signs of an infection.
The ultrasound showed not only inflammation but a clear substance surrounding my appendix. In fear it had ruptured, I was rushed into surgery for an emergency appendectomy. As the gurney glided down the hallway, across the lightly scoffed two-toned beige vinyl flooring towards the operating room, I was overcome with two emotions. The first was vindication that my pain had been validated. And, secondly, anxiety, as while the emergency room doctor did not fully dismiss my pain, he did not fully believe it either.
After the surgery I learned my appendix did not rupture and the surgeon suspected it was a case of acute appendicitis. And, as for that clear substance, he couldn’t explain and wrote it off as an anomaly. Over twenty years later I’d find out there was a strong chance it was endometriosis.
At sixteen, I was the last of my friends and family to get my period. When it came to the Fernie Household, debilitating periods were run-of-the-mill. So, when I experienced the aftermath of a grenade attack in my pelvic cavity, I assumed I was given the horrendous-cramps-gene, while my sister Kelly got the blinding-migraines-gene. I remember expressing this pain to my family doctor, who, at the time, responded by putting me on the birth control pill. He also reminded me that cramps and discomfort are common during periods.
I’d spend the next eleven years seeking help from a variety of medical professionals only to have my pain dismissed, claiming it is nothing more than stress. These blatant dismissals began to take a significant toll on my mental health. With no doctor validation, I started to believe there was something wrong with me as everyone else with a period seemed to be functioning just fine. I blamed and hated myself for not being strong enough to endure these-so-called normal cramps. Exhausted of being labelled a ‘drama queen’, I conditioned myself to push through the pain and hide my symptoms to the best of my ability.
In 2009 at twenty-six, it had become not only a struggle to get out of bed, but the wild emotional rollercoaster I was forced to ride during my period was becoming too much. The hours of pain spent in silence, drowned by my cannabis and alcohol consumption, were beginning to catch up with me. While visiting my sister for the holidays, my body surrendered to the latest battle and I was admitted to the hospital with severe pelvic pain and nausea.
After fifteen months of being subjected to a plethora of tests and medications, in March 2011 during exploratory surgery, lesions were discovered on my right and left uterosacral ligaments.
There it was.
I finally had validation.
My pain was real.
And, it had a name - Endometriosis.
Since the exploratory with ablation surgery I have undergone five more surgeries, four of which were related to my endometriosis. My next surgery was ablation and only a few months later in October 2011. It would be almost three years and a cross-country move later before my first excision surgery in July 2014. The next surgery was on January 3rd, 2018, eight weeks to the day before my wedding. The surgery was excision, dilation and curettage along with resuspending my abnormally retroverted uterus in hopes it would help with the pain and also for future family planning. During my six-week post-op transvaginal ultrasound, we discovered my uterus had shifted from the common anteverted position back to retroverted. The sutures put in place to hold my womb, while still intact, were being stretched as my uterus moved. The pain was excruciating. July 26th, 2018, I underwent my fifth endometriosis surgery in just seven years, a hysterectomy and left-oophorectomy.
Unfortunately, my symptoms did not improve and led to another congenital disorder diagnosis - an aberrant right subclavian artery. Instead of being formed off my right common carotid artery, my right subclavian artery formed on my aortic arch and wrapped around my esophagus causing a compression on both my vagus nerve and esophagus as well as causing incorrect blood-flow to my brain. On November 4th, 2019, I underwent a thoracotomy to remove my right subclavian artery from my aortic arch and reattach it to my right common carotid artery.
I wish I could say now at the end of 2021 at the age of thirty-eight that my symptoms have gotten better, but, in fact they have gotten worse. I am still working with my endometriosis surgeon at the The Centre for Pelvic Pain & Endometriosis in Vancouver trying alternative medicines and therapies in hopes to help manage these symptoms.
I have left my film career and have decided to dedicate my time to healing, learning and researching while raising awareness and advocating for those also suffering from chronic pain.
“I blamed and hated myself for not being strong enough to endure these-so-called normal cramps.”
Erin this - unlike many of the endometriosis stories I have heard - seems far more surgical and invasive. Through it all you have stayed so strong. Can you try to explain what the pain feels like for each of these issues?
Depending on the day, I like to refer to my remaining ovary as my Ovarian Rat Queen, Gloria (the female version of the Rat King from the Nutcracker), who gnaws and scratches her way through my insides. Then there are other days when Gloria isn’t enough and my endometriosis calls over Jigsaw, turning my body into the Saw chamber of horrors.
The pain and nausea are unpredictable and relentless making life quite difficult. The physical symptoms are one thing to deal with on their own, however, the mental toll chronic pain takes is another thing altogether.
You so eloquently described your diagnosis above but can you give us a snapshot of how the diagnosis was ‘dismissed’ over the years?
In my early-twenties I saw three different gastroenterologists for my nausea, bloating and pain. The first claimed the pain was stress and in my head and I rethink my career in the film industry. He even went as far as suggesting to my family doctor he talk to me about stress control. The second claimed it was a form of irritable bowel syndrome (IBS) and recommended a low-FODMAP diet. When the symptoms persisted, he blamed me claiming I had not been following the diet, even though I had been. I asked to be referred to the third gastroenterologist who agreed with the second gastroenterologist, it was nothing more than IBS and recommended meditation and yoga for stress.
Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.
I am convinced there is a connection between endometriosis and the gut. It seems like almost everyone diagnosed with endometriosis has some sort of gut issue and/or most likely was misdiagnosed or given the blanket-diagnosis of IBS. There have been some studies recently published about endometriosis and the effect of it on the gut microbiota, including one study that showed an abundance of twelve different bacterias in the gut of patients diagnosed with endometriosis. If you are interested in these studies, you can read more at PubMed.com
What are some of the more modern medicine techniques that have worked for you?
I won’t lie, that is a bit of a tough question as my symptoms have only gotten worse. However, with that said, excision surgery was more successful regarding keeping the stabbing pain away for longer than the ablation surgery.
Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?
Of course. In order to help manage these symptoms I use cannabis everyday. I have found consuming cannabis to be more effective at allowing me to feel more human than when I take hydromorphone. Thanks to my incredibly supportive partner turned caregiver, Ciarán, minces fresh ginger into a tea bag for me daily to have with hot water and honey to help with my nausea.
Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?
Absolutely! I am currently waiting for an appointment to try Intramuscular Stimulation (IMS) which is similar to acupuncture. In the past, I have found massages, acupuncture and cupping to help relieve some pain.
What would you tell our readers in order to help them consider alternative therapies?
Endometriosis affects everyone differently. And while sometimes it may seem next to impossible, try not to be discouraged if one or more of the therapies do not improve your symptoms. It is an ongoing process of trial and error that takes time.
And lastly, what would you tell your younger self about pain management?
I would tell younger Erin that the trauma created by this disease’s insatiableness for pain is unparalleled. And, there is nothing that I can do to prepare for how it will infect and spread throughout my life. I would remind myself to be more patient and kinder to myself as I grieved the life I was losing and to stop adding so much pressure to myself to make sense of a disease the medical community is still researching and understanding.
Anything else you want to tell our readers?
Trust yourself.
Listen to your body.
You are not alone.