JULY 1, 2021
“JUST MOVE YOUR bottom down closer to me and open your legs a bit wider.”
The ultrasound technician looks at me dispassionately. Her statement smells stale and sounds rote. How many of these procedures has she already done today?
“Now you’re going to feel some cool jelly on your tummy.”
I don’t know why my body flinches, because I’m an old pro when it comes to following orders from healthcare providers. This is not my first rodeo. Lying in a dark room on white crinkly paper while a stranger medically violates me is nothing new. Not pleasant, but something I endure every now and then to protect my health — and ensure nothing like a cyst or mass is lying in wait.
I already have a diagnosis — endometriosis. It occurs when cells similar to those in the endometrium (the layer of tissue that usually covers the inside of the womb) grow outside of it, causing intense pelvic pain. I was diagnosed almost 20 years ago, and despite eight laparoscopic operations, two rounds of medical menopause, and a hysterectomy, endometriosis continues to rear its chronic head every few years. Often removal of the affected tissue creates adhesions or scar tissue, and back under the knife I go. The cycle is vicious and endless.
When the tech starts the ultrasound, I crane my neck, squinting at the screen. I know I won’t be able to decipher anything, but I still search all the same. Who knows what could be lurking in that abyss — the place where my uterus, cervix, fallopian tubes, and left ovary used to be?
My thoughts zero in on all the things that are missing in me. The middle section of my body is a black, empty place. My right remaining ovary is the size of an almond.
It’s the last living thing in my reproductive mausoleum.
Sometimes, before I go to sleep, I worry that endometriosis is silently wreaking havoc in my body once again, and I’ll wake up to find it’s ruined my whole life. This single ovary I have left has a power all its own. I no longer get a period due to my hysterectomy, but it’s responsible for the menstrual twinges and cramps I get twice a month. First at ovulation, and then when I would usually bleed. And if I want to lessen my chance of dementia, osteoporosis, and heart disease, I won’t have this tiny organ removed, no matter what grief it gives me. So I live in a state of dread and fear.
I never know when it’s going to have its way with me.
“Now turn to the left and face the wall.”
I twist and turn my body in different directions so the technician can take multiple pictures. She is searching for anything ominous or out of place, clicking away.
“Now take a deep breath and don’t let it out until I say ‘breathe,’ okay?”
I inhale, mentally shoving everything my body has been through into a drawer in my mind. This is what I usually do to stay calm. I’ve done it in dozens of appointments just like this, but today, after 18 years of dissociation, the drawer finally overflows. It won’t stay closed. Every blood test, doctor’s appointment, invasive procedure, and diagnostic surgery bursts out all at once.
The technician stops suddenly and peers at my face.
“Are you all right?”
I am crying without a sound, hot salt water streaming down my cheeks. I want to sob and shout out that nothing about this is acceptable, even if I’ve given consent. A wave of panic rises in my chest. It’s like this small, sparse room — similar to so many I’ve found myself in the past — is closing in on me.
“No,” I answer the technician finally, embarrassed to be caught falling apart over something so routine.
I don’t understand why my body is acting this way. It’s like it has turned on me. My brain attempts to command it:
Get a hold of yourself, for God’s sake! Just settle down so we can get this over with. There’s no reason to be scared. You’ve done this a million times!
But my body’s not listening.
“Could you please go get my husband?” I ask the tech through my tears.
She nods and pads quietly down the hall. A few minutes later, he enters the room, a surprised and concerned expression on his face.
“It’s just all too much,” I gasp, overwhelmed.
He walks up to the exam table and takes my hand. I exhale a huge sigh of relief.
When it’s finally over, and I have my clothes back on, I am more myself, but my body still feels like it’s a stranger. And as I bend down to put on my shoes, I get the sense that this episode is far more than just a fluke.
It’s only when I’m walking down the street, back to the car, that I wonder if there could be something seriously damaged in my psyche.
Whenever I hear about post-traumatic stress disorder, I usually think of a veteran suffering nightmares or flashbacks after coming back from war. Someone obviously struggling. But there are so many different types of trauma, and the one with the least awareness is medical PTSD. It’s basically psychological damage that results from a medical diagnosis or intervention. I didn’t know there was a name for it. I didn’t realize it was a real thing. I didn’t know what “triggers” meant, or that there was a way to treat it and get through it.
Until that unnerving ultrasound experience triggered my feelings of vulnerability, I had no idea there was an explanation for my feelings.
On the surface, the procedure had been no different from the rest. Mildly uncomfortable, but nothing I couldn’t handle. I know now that my anxiety attack wasn’t a random event. It was my body, trying to get my attention.
For years it had desperately been trying to talk to me, but I had tuned it out, mostly because I was afraid of what I’d hear.
In the car, on the way home, I hear my body for the first time.
I am the warning sign you ignore. I am the fire alarm you don’t hear. I am the red flag you don’t see. And I love you still.
I sit back in my seat, stunned. Where is this coming from? I feel like an intruder has taken over my mind and hijacked my thoughts.
“What do you want?” I ask.
For you to stop giving me the silent treatment. You keep abandoning me, and all I want is to be a team. When are you going to realize that I’ve never been your enemy?
“I don’t know how to build a bridge between us,” I admit. “I have so many mixed feelings.”
She pauses for a long moment. I understand that, but I need you to accept me, with all my flaws and frailties, and start trying to bond with me.
I shift in my seat. I still have so much anger toward her, so much rage caged in my chest.
Just when I think her voice has disappeared, she asks me something else.
Do you think you can do this?
“I’m not ready.”
When the world-renowned surgeon enters the room a few weeks later for my follow-up appointment, he doesn’t address me by my name. I let it slide. He is a specialist when it comes to endometriosis, and he comes highly recommended.
He walks over to me and silently pushes down hard on my abdomen and leg, which I surmise is some kind of test.
“It’s your psoas muscle spasming,” he announces, without a shred of doubt in his voice.
I look at him blankly, not being an expert in the field of human anatomy.
He tells me it’s a muscle located in the lower lumbar region of the spine, and that it extends through the pelvis to the femur.
“But I’ve been having really bad pelvic, back, and leg pain for a while now,” I reply. “It really feels like period cramps to me. It started about five months after my hysterectomy.”
The man is intimidating as hell, but I figure this appointment with him may be my only shot to speak up. This is the first time I have questioned a doctor of his caliber. The conversation I had with my body stuck with me, and it’s also prompted me to advocate more strongly for myself. Now that I know how vulnerable my body feels, and I realize it’s my job to protect her.
“My gynecologist was open to the idea of me trying that new medication, Orilissa,” I respond, “the one that puts women into medical menopause. The research shows it improves moderate to severe endo pain. She was curious to see whether the origin of my discomfort was gynecological or not.”
It’s the first FDA–approved drug in ten years to come onto the market to treat endometriosis. I have researched it myself, and I’m interested to see if it eases my anguish at all.
He looks at me, mild disapproval on his face.
Is it because I’m finally being my own advocate?
“You can try it if you want,” he says reluctantly, “but only after you give the muscle relaxants a real chance first.”
I can tell from his prickly bedside manner that he doesn’t put much stock in his patient’s hypothesis.
I nod at him before he turns and leaves the room, but I’m sick of always doing what I’m told.
Endometriosis has been described as the most aggressive non-cancerous disease a woman can experience, and I can attest to this. I have been fighting her — this invisible adversary — on your behalf — for close to 20 years.
Do you think I just sit by and do nothing?
“I get all the failed cases,” the specialist casually informs me at our next appointment, a few months later. “Every woman who’s had a complicated past with endometriosis is being sent my way, but I still don’t think that’s what’s happening with you.”
I hesitate, nervous about contradicting him, but then I gather my courage and press on.
“I’ve taken the muscle relaxers you prescribed for a while now, but they don’t really seem to be making a difference,” I inform him. “Then I started the Orilissa, and it’s the only thing that’s helping me function on a daily basis. It’s taken about 90 percent of my pain away.”
He looks surprised at this update, a bit put off.
Is it because I don’t fit into his neatly labeled box?
Maybe my intuition is wrong. But how can he really know my body and what’s going on inside of it better than me? I have given the man the benefit of the doubt. After all, he has the medical degree, not me. But the pills he prescribed didn’t do a damn thing. So, if muscle spasms are all that’s wrong with me, why haven’t they helped?
“All right,” he says. “Let’s send you for a MRI, and see what comes back.”
I’ve been piling up all my traumatic moments for a long time. Keeping score. The stack is pretty high, but I don’t want to do that anymore. I’m the only body you’ve got, so please start showing me some respect.We are on the same side here, but the work that I do to protect us goes unseen. You regularly call me ‘faulty,’ like a broken toy you wish you could return to the store. I don’t want to hear that anymore.
Did you know our bodies have memories? I’ve heard so much about the potent mind-body connection over the years. How much it contributes to our lived experiences. But I guess I never realized how profoundly it pertained to me. I’d been raised to see my body as split from my mind, a completely separate entity. This disconnect is especially prevalent in Western society. We don’t really pay attention to our body until something goes wrong. There is no inherent bond. Our sense of self is primarily rooted in our minds. This is opposed to Eastern philosophies, which view the body and mind as coming from the same energy source. In this case, patients are encouraged to tap into the mind/body’s self-healing abilities.
Thinking back on all the trauma my body has gone through, I now understand why pelvic physiotherapy was such a disaster for me. I felt removed from my body, like I was floating above it. The sense of it being yet another violation was strong. Even though the therapy was performed by a gentle and intuitive woman, I lasted only four sessions before bolting.
Besides my history with endometriosis, I believe the distress my body suffered giving birth also contributed to my medical PTSD. My baby was stuck, sunny-side up, and the doctor used his hand to try and turn her around inside me. That manual manipulation was the worst part of my labour experience. And it’s never left me.
Or my body.
All you see is the outside. Your bloated belly that makes you look five months pregnant. The hot water bottle burns on your stomach.
But I have done everything I can to defeat this enemy. Sometimes I feel like I’ve succeeded, and there will be a temporary reprieve.
Don’t you know I would never bring pain on you willingly. Why? Because hurting you means hurting me.
When I return to the specialist’s office several months later, my ultrasound and MRI results are in. I wonder if the endometriosis is back? If so, what will the treatment be? My doctor tells me that it turns out my vaginal vault is tethered to my sigmoid colon. It sounds pretty abnormal to me, but he says it’s not enough proof for him that my endometriosis has returned. He wants to do a physical examination to satisfy his skepticism.
No, don’t let him do this to me! my body cries.
I ignore her demand and the panic in her voice. I have no choice.
When his female doctor-in-training first puts her fingers in me, it hurts, but not to an excruciating degree.
“I don’t really feel anything,” she reports.
“Let me see.”
I hear him putting on his latex gloves and try not to shudder.
This is your last chance! my body says, more urgently. Do something! This doctor is going to harm me!
When he crams his fingers inside of me, he intentionally moves them to specific places, trying to find what he’s looking for. Usually I grimace and bear this sort of forced entrance without a sound, but this exploration is the most brutal I have ever gone through. I can’t help crying out several times.
He keeps going.
Finally it’s over, and I can breathe again.
“I’m sorry for that,” he says. “But I needed to be sure what we’re dealing with.”
Then her turns to the other doctor. “It’s left parametrial endometriosis.”
After undergoing a three-hour laparoscopic surgery, I wake up to hear that it went well and that three endometriosis nodules have been sent to the lab. My surgeon has also removed a bunch of scar tissue and freed several nerves, mainly on the left side of my body. I am groggy yet giddy in recovery, incredibly relieved that the doctors have found evidence of my discomfort. Here, finally, is tangible proof of my pain.
When I arrive for my six-week follow-up appointment, my surgeon and I immediately get off on the wrong foot.
“How’s your left leg?” he asks, since that’s the side of the body he mostly operated on.
“It’s getting stronger, but it’s still a bit floppy. I’ve been doing the physiotherapy for 20 minutes at night, instead of ten minutes twice a day.”
“That’s not going to work,” he says, getting heated.
Instead of discussing the actual surgery and walking me through what he found, he seems to be fixated on my failure to listen to his instructions.
But I am not interested in his recriminations about my stretching. My pain prior to surgery has returned, and I want to prioritize that in our conversation.
“I feel it in the left side of my groin, radiating down my leg. I had no discomfort for a month after the operation, but then it came back for a week, and now it’s gone again. It seems like it’s cyclical to me.”
“That actually sounds like a psoas muscle spasm,” he answers curtly. “That was our initial diagnosis, if you remember. Besides, the lab report says the nodules we sent were all negative for endometriosis.”
I feel like we are back where we started, me trying to convince him that my pain is gynecological in nature. I burst into tears, so tired of saying the same thing over and over again.
“I don’t think you don’t understand the severity of my pain,” I tell him. “Its effect on my day-to-day life.”
He looks unused to being challenged. “I am not diminishing your pain at all. I am simply saying that the source is muscular, and not due to endometriosis.”
“I want my right ovary removed,” I announce impulsively, struggling to get the words out through my sobs.
I don’t care that I’m quickly unravelling in front of him. I need a solution.
“Doing that would put you into early menopause, and that’s a drastic step to take. Besides, it only helps less than ten percent of women feel less pain. The risks far outweigh any chance of benefit.”
He wants to send me to a doctor who specializes in pain management instead, but I argue that if I got rid of my remaining ovary, this would instantly end my torment.
We go around in circles, me crying uncontrollably, unsuccessfully trying to plead my case.
He sits and stares at me in brooding silence. He looks surprised and annoyed, as if he genuinely doesn’t know what to do with me. As if none of his patients have dared to go up against him like this.
Eventually I agree that I will attend the courses for pain education and see the pain-management doctor to discuss medication.
Then he declares that the only way he will consider taking out my ovary is if the pain specialist tells him it’s necessary.
He is clearly done with me, and pissed off that I have taken so much of his time.
“Do you know how many patients I could have seen during this visit?”
It’s the end of the day, but I don’t bother pointing this out.
I have been voiceless and powerless for too long, my body suddenly pipes up. Keep advocating!
I try one last tack. “If you’re back to thinking it’s just muscle pain again, then why did the Orilissa help me so much? How do you explain that?”
He is baffled for a moment, as if he’s sincerely struggling to find a reply. Then he delivers the blow that stuns me into silence.
“It must have been the placebo effect.”
I leave the appointment with my head down, astounded and dejected.
Later that night, my body invites me to have another conversation. I am emotionally exhausted, but in order to strengthen my bond with her, I need to hear more of her story. All those hellish moments she’s absorbed and endured on behalf of me.
I don’t know if I can handle any more surgeries, she admits, quietly. All these years, I whispered to you about my trauma, and it didn’t work. You didn’t hear me. Then I had to resort to shouting, and sending you stronger signals. I don’t want that to happen again. For you to stop listening.
I remain silent and let her speak. I am finally ready to make peace with my body, chronic illness and all.
I am always here, suffering through this pain right along with you, she reminds me. I was never your nemesis. Do you finally believe me?
Now that I’ve got your attention, I need you to forgive me. To accept me unconditionally.
I feel tiny rivers of salt flowing down my cheeks. “I do. I hear you. It’s taken me a long time to figure it out, but I am you.”
She pauses, then sadly says, I have so many invisible wounds and scars beneath the surface that you’ll never see.
“But now I know they’re there,” I answer, a hint of hope in my voice. “We’re a team, remember? And that means that we can finally start to heal.”