I thought I knew the differences between pain.
I thought I knew so much more.
Until I was hit with a stomach-ache that blossomed into blinding pain for close to 2 weeks before I went into the doctor’s office. It felt like a pair of giant hands were crushing my lower abdomen and a series of sharp explosions would follow.
I thought it was appendicitis. I was turned away by the first doctor I saw, take some Tylenol, if it doesn’t get better come back. So, I waited the weekend out. Went back to work only to cripple over from the pain, tears streaming down my face, crying out for help without anyone coming to my aid until I walked my sorry ass home and was driven straight to the emergency room where I stayed for almost 13 hours trying to narrow down what was wrong.
A cyst, measuring 6cm x 7cm x 6cm, sat on my right ovary – the largest one the doctor had ever seen and still I was snowed out with morphine and other pain medication, only to be sent home and told to get another ultrasound in a few weeks and to check in with my family doctor ASAP.
I was baffled that they wouldn’t just go in and take it out. I was baffled that I had to continue to be put through agonizing pain for who knows how long.
But still, I went home and sucked it up. Crying myself to sleep more times than not until I was able to go to my home clinic and see my family doctor. Where I was given a prescription for stronger pain medication and told that they would get in touch with a specialist.
So, I left again.
An hour later, I received the only hopeful piece of information – they were able to get me into a specialist the next day.
Almost 4 weeks of constant pain. Nights left sleepless and sitting in a warm bath because nothing would take away the pain.
But after that appointment I was left with more disappointing news. I would have to wait five months for surgery.
Wait… really? Yes, surgical times are hard to come by, especially in gynecology.
How was I supposed to inform my employer that due to my pain that has turned chronic that I would be gone from work until further notice? How was I supposed to live without an income because they already informed me that since I was a few months shy of one year with them that they would not be able to give me any sort of compensation for medical leave?
So, I waited. Got my doctors notes and figured things out.
In a good week I would get 20 hours of sleep. I didn’t want to leave my house because of the bags that were around my eyes, the strain that it put on my body just to get out of bed. One minute I would be okay and the next I would double-over in pain, tears streaming down my eyes. I couldn’t go to the washroom without being in pain. My time of month was just horrendous.
But, I kept going.
But, I also lost myself. I had no one that understood the pain. Sure, they could see the pain that I was in but nothing they said made me feel any better. In the months that I waited for my surgery I went through more bottles of pain relief than I ever wanted in my body. I was also stubborn about taking them and the moment I waited too long, I regretted it. I felt myself, my personality, my sense of who I was slipping away.
I missed laughing because when I would laugh it would hurt so fucking much.
Then I got a call. My surgery could be moved up one month – April. I could get Aunt Lydia (yes, I named my cyst after the relenting character from The Handmaiden’s Tale) out and resume my life.
Little did I know, that who I was going in to the OR that day would not be the same person coming out.
When I woke up, a blanket was wrapped tightly around my head and body, I was like a tiny burrito that was just coming out of the press. A nurse told me that they had a hard time getting my body temperature to rise, hence the blankets, all I remember saying is okay and she said that the doctor would be here soon. I think I fell back asleep because the clock above me was now 30 minutes later, the doctor was staring down at me, she said there was complications and I would be staying overnight. Again I said okay.
I woke up again, in a room filled with other ladies. I was propped up in my bed at an angle – to this day I still need to sleep that way because of the pressure. When the doctor came to give me the news of the complications, I was still alone. She said slowly – the cyst ruptured when I was trying to take it out so we had to cut you all the way open. She motioned to my abdomen and lifted up the gown where I first saw the bandages running from hip to hip. She then told me that the cyst was fused to my abdominal wall, that my left ovary was fused to my bladder. She said that she had to do an ablation, reconstruction, and other things. She said that I had Stage 4 Endometriosis.
Endometriosis. Stage 4. Severe.
Again, okay was all that came out of my mouth.
I could feel the tears running down my face as she escaped the room. The nurse holding onto my hand. My voice soft as I told her my story. Her voice just as soft as she consoled me.
And now, that’s where I am today. Still recovering from a surgery that got complicated. I am also being put through a medically induced menopause to try to tame the endometriosis. 3 more months of hot flashes, night sweats, crazy emotional outbursts. I am beyond scared to have my first period. But then it will be constant monthly appointments, ultrasounds, changes to diet and exercise.
So, I am left trying to figure out my new normal because everything has changed. My mind isn’t the same. My body definitely isn’t the same.
For many women, it takes MONTHS to convince a doctor to get them to actually go in and take out a cyst. Why? Because 9/10 times it will go away on its own. For many women, it takes YEARS to convince a doctor endometriosis-related pain is authentic and excruciating, not just digestive problems or normal cramping during menstruation.
My own family doctor, who has provided so much insight and is the most incredible doctor I have ever had, even stated that doctors won’t ask about menstruation pain due to the fact that people have different thresholds and it’s not common to ask unless the patient brings it up.
And now, looking back, so much makes sense. The pains in my stomach when I would eat. The pains in my rib cage. The fucking pain everywhere that no one understood. The pain that got turned into an eating disorder when really it could have been the first signs to everything that is going on now.
It bothers me that a chronic disease that affects 1/10 women doesn’t have more information out there, especially to young girls. It bothers me that at 28, just when I was about to get serious about starting a family, that now it is going to be one of the most difficult tasks I will ever have. It bothers me seeing everyone on my Facebook or Instagram posting their announcements and here’s me, sitting here popping cysts.
But please, don’t tell me that you understand the pain unless you have it. Please don’t tell me just to take some Tyelnol or Advil and it will get better. Please don’t tell me that it doesn’t hurt. Please don’t tell me that it’ll get better with time. Please don’t tell me that it goes away after surgery because it doesn’t.
I know I am bitter. I know I am selfish. I know I am not alone.
And that’s the important thing.