On my 16th birthday, I experienced my first ovarian cyst as my birthday present. Not a car to accompany my newly acquired license, but a cyst. I was doubled over with pain and limped to school having no idea what was going on inside of my body. To diagnose this cyst, I received my first internal ultrasound 1.5 hours away from hom in Cranbrook to confirm that the cyst had cleared – obviously it had as I felt it burst inside of me. My pain continued until I left home at 18 to attend the University of Alberta.
During my first year of university, I was struggling again with intense pain and very heavy periods. Given my physical location in a large centre, I decided to make use of the on campus medical resources. I received a referral to a UofA gyno (Dr. Tankel) after being told by a walk-in doctor that I had PCOS and would likely never be able to get pregnant. The PCOS diagnosis scared me. I tried a summer of an oral progesterone program in an attempt to regulate my suspected PCOS. This regime had little to no effect on my cycle or pain.
I transferred to Kamloops for my 3rd and 4th years of university. It was there that I saw a gynecologist to discuss my pain. I told him that I had a previous diagnosis of PCOS and he suggested that I try “ovarian drilling” – a procedure usually used for stimulating cystic ovaries. He booked a surgery date for the next week, however I later cancelled the surgery because I was nervous and felt uninformed on the procedure, recommended by a doctor whom I had just met and spoken to for 10 minutes.
Once back in Calgary for my master’s, I was referred to an endocrinologist who put me on metformin in an attempt to regulate my cycle by regulating my blood sugar. He also told me to lose 10% of my body weight. Even after running and dieting to reduce my weight from 160 to 145, I did not notice a difference in my symptoms. When starting metformin, I was nauseous for the first 3 weeks of taking this medication, almost unable to complete normal life tasks. I constantly dry heaved and felt dizzy. After the initiation onto Metformin once the nausea had subsided, I continued this medication for about a year with no change in my cycle or weight. I had cycles that were all over the map – sometimes 4 month breaks between, sometimes three periods in a span of 6 weeks.
I continued to attempt to manage the pain with copious amounts of Advil and intermittent visits to the walk in to stock up on pain meds.
Last March I experienced another ovarian cyst rupture. I was bleeding from my rectum and was doubled over in pain. I went to work, but after work decided I was no longer able to function. Breanne and I went to emergency at Rocky View. I spent hours in the emergency room while the doctor ordered me an internal ultrasound. It was confirmed that I had a hemorrhagic cyst on my left ovary. During this procedure and all internal ultrasounds prior, I experienced immense pain with the probe. This pain was a shooting, deep pain that ran up the back of my spine and brought me to tears. This kind of pain with an ultrasound is not what one would consider “normal”. Prior to entering the ER that day, I had been added to the Endometriosis Support Alberta Facebook group and had my eye on an endo doctor named Dr. Chandrew Rajakumar. Waiting in the hallway as I was about to leave the ER, I told my ER doctor that I really needed a referral to my doctor of choice. I thought I had endometriosis and I wanted to speak to a specialist. I told her Dr. R’s name and she scribbled it down on a piece of paper. I later found out that she was the one who had rushed my referral and gotten me on the list to see Dr. R.
From that hospital visit forward, I had a rough few months. I had extreme pain when sitting down on any surface – a bed, office chair, car seat – basically anywhere. I experienced vertigo, legs that were weak when running, motion sickness, dizziness, diarrhea, nausea, lack of appetite, upset stomach, pain along the front of my bladder when emptying, and heaviness in the pelvic floor when defecating. As an avid runner, I felt horrible lower back pain when running and often woke up to crippling back pain in the mornings.
My MALE family doctor had told me numerous things including that “pain with periods is normal”, that I should just take the birth control pill to deal with the pain, and that any weight gain supposedly from the pill was simply due to the fact “I ate too much and didn’t exercise enough”. I often went into the walk-in clinic to get my pain medication prescriptions refilled – male walk in doctors were often more caring and sensitive to my pain than my own family doctor.
To deal with pain on bad weeks, I usually started my day off with a coffee and 2 x 400mg Advil. In the middle of the day I might take a few T3’s and more Advil as the day progresses. I have taken Toradol and Naproxen – neither of which seem to assist the pain any more than Advil does.
In September of 2018 I saw Dr. R for the first time. He laid out my options and I chose surgery so that I could have physical confirmation if I was indeed suffering from endometriosis.
Day of Surgery
Breanne, my mom and I arrived at the hospital at 7:20 for a 10:20 surgery time. I sniffed at their Americanos jealously while we waited. I was admitted into the day surgery area and given a hospital gown, booties and a hair net. We sat in the room for a bit before a nurse came in and gave me a shoddily stabbed IV. I was started on fluids and took a few IV assisted trips to go pee, including peeing in a cup to ensure I wasn’t pregnant. Lab services came in to take a few vials of blood to type and screen. I waited for a little longer. Around 10:00 my Surgeon came in and asked me to confirm with him the surgery I was receiving. He was very kind and had an amazing bedside manner. A medical student of the anesthesiologist came into my room to do a pre-surgery check of my airway, and to ask me a few questions as I had never undergone general anesthetic before. I took of my pants and undies, put on my booties and hair net and walked to the operating room with a nurse – you know how one loves walking with no undies on and a flapping hospital gown, very sexy indeed.
I walked into the OR, hopped up onto the operating table and laid down on the bed. I chatted a little with the anesthesiologist. He checked my airway – Class 1 which is apparently the best. The nurse placed warm blankets on me because I was shivering and a little nervous looking up at all the lights and instruments surrounding me. The medical student placed an oxygen mask over my nose and mouth and asked me to take some deep breaths to fill up my lungs. The anesthesiologist told me that I would feel a little pinch then the anesthetic went into my arm. I waited while everyone was quiet watching the monitors and I felt it hit me. The surgeon made 4 small incisions for the camera and other tools. During the surgery, Dr. R scoped my bladder, my rectum, examined my appendix to see if it was affected by endo, and located and removed any endo present.
When I woke up my throat was sore and my voice was raspy from being intubated. The surgery took around 4 hours and I was in recovery for about an hour before I woke up and was wheeled back to the day surgery area where Breanne and my momma were waiting. Apparently, I was super high and said a bunch of ridiculous things I do not remember. At this point my pain was a 2/10 because I was still high AF. After a bit of time I was beginning to feel pain so I was given a Tylenol and a naproxen. I tried to drink some water and immediately vomited (but not the pills). I ate a popsicle and an apple sauce but didn’t vomit.
I then started to feel insane pain from the gas they had used to inflate my abdomen during surgery. The nurses wanted to make sure that I wasn’t feeling the pain from a full bladder so they tried to lay me down and do an ultrasound on my bladder. Laying down flat made me feel like I was going to pass out and I was writhing in pain. They gave me liquid morphine in my IV and it helped moderately to stop the pain but made my teeth chatter. A very nice nurse kept bringing me warm blankets to put on my belly and shoulders. I managed to go pee and my urine was atomic yellow. I realized that walking around with my IV in tow made the pain feel a little better. I continued to walk around the day surgery recovery area and the place had already cleared out.
I will continue sit on a heating pad every day all day at work to help with the lower back pain that I experience. I imagine I will continue taking Advil every day for a few months, but am very much looking forward to not continuing this regime.
Receiving a diagnosis makes me feel at peace. I hope that if any other women want to discuss their pain or ask me about my experience, they reach out to me. I am more than happy to talk about this epidemic that affects 1 in 10 women. I will be running in next year’s run/walk to end Endometriosis, and I will be vocal in my circle about endometriosis and the impact it has had, and will continue to have on my life.
Timeline to Diagnosis
- Cyst Bursts. Saw gynecologist. Tried several types of Birth Control Pills.
- Saw Dr. Tankel at UofA gyno clinic. Diagnosed with PCOS
- Gyno in Kamloops suggests that I try Ovarian Drilling. I am too nervous and do not go forward with surgery
- Saw endocrinologist in Calgary and started Metformin.
- Referred to Gyno in Calgary and told that I should I should get an IUD and go on the birth control pill. Again, told I didn’t have endo.
- Cyst bursts. In ER. I ask for a referral to Dr. Rajakumar at Women’s health Clinic in Calgary. ER doctor sends referral.
- I see Dr. Rajakumar for the first time after 6 month wait. Surgery Scheduled for June 24, 2019.
- Surgery rescheduled for September 4 – 1 year wait from initial consult with Dr. R. Surgery completed September 4, 2019 and positive Endometriosis diagnosis.