Between the ages of 26 and 29, I had no fewer than six burst ovarian cysts.
At that point, my endometriosis was completely out of control. These cysts were part of the chronic pain I endured over the years.
If you have never experienced a burst ovarian cyst, I can tell you that it is one of the most painful things a person could possibly go through. It starts with a pain, usually in your side or back. Initially, the pain is manageable enough. It almost feels like you’ve pulled a muscle or a stab in your side.
But all too quickly this pain builds up, radiating from back to front until you feel like you are being stabbed straight into the ovary.
And you know it’s your ovary. At least that’s what I’ve always done. It is such a unique and undeniable pain that you only have to experience it once to know exactly what will happen when you go through it again.
Unfortunately, convincing ambulance doctors what you already know is never that easy.
Every time I had a cyst explosion, I vomited, had difficulty breathing, and could barely walk.
I would go to the hospital for relief, but also for help: Burst cysts can cause ovarian torsion as an ovary rotates around the tissue that supports it, which can become very dangerous very quickly.
Emergency rooms were my way of trying to stay alive.
As any woman with chronic pain will tell you, a woman’s doctors aren’t always quick to believe in pain. This is a well-known phenomenon: women are treated differently than men when complaining of pain in medical facilities.
It is known as a “pain bias,” where men in pain are seen as brave while women in pain are treated as overly emotional.
I’ve seen it firsthand.
I was in the hospital at the same time as three different men showing symptoms of kidney stones. All three were given pain medication right away, long before doctors could confirm what was wrong with them.
While showing up in the same emergency rooms, in pain and knowing exactly what was going on, I was always treated like a drug addict.
Doctors would look at me suspiciously. Medication would be withheld for hours until painful and invasive transvaginal ultrasound scans could prove what I was saying to be true.
And even when these tests for the doctors confirmed that I knew my body as well as I insisted, there was no sympathy for my tears. No show of humanity in the face of my pain.
And I’m certainly not alone in that.
Over the years and as a result of consultations with my regular gynecologist and therapist, I learned to better maneuver this flawed system. how to relieve my pain by telling doctors I’m on a 7 even if I feel like I’m on a 10 just for them to hear me out before they write me off right away.
I’ve developed some kind of guide to help you get through these trips as unscathed as possible. Here are my tips that I’ve shared with many women over the years who have been newly diagnosed with endometriosis.
Carry your medical history
I kept a notebook where I kept all of my medical records, everything from my five surgeries and previous ERs.
I even had a message from my doctor confirming my diagnosis of stage 4 endometriosis and her home number if emergency doctors wanted to see my case. This at least legitimized my claims when I showed up sobbing in pain.
Bring someone with you
At the height of my battle with endometriosis, I was a single woman who lived alone. And contrary to what some paramedics have thought of me, I hated being viewed as overly dramatic or putting the burden of my care on others.
On these first trips to the emergency room, I traveled alone. I took cabs and didn’t tell anyone.
I paid dearly for these stoic decisions. The doctors assumed I was just trying to get drugs. I finally found out I needed a lawyer with me when I showed up in an emergency room.
I was in too much pain to communicate effectively and I couldn’t fight for myself in this state. Having a friend who knew my story meant that another voice in the room came in for me.
And that’s invaluable when you find yourself in a situation where doctors aren’t listening to what you have to say.
“I think it’s really important that someone is there who encourages you, takes root, says you are not alone, and helps you feel stronger and more powerful.”
– Tia Mowry, who was diagnosed with endometriosis in 2006
Ask for a doctor
I don’t want to belittle male doctors. My amazing endometriosis surgeon is male and he is one of the most competent endometriosis experts I have ever met.
But in my experience, his compassion for women struggling with this disease is unique. And all of my most traumatic hospital visits have been to a male doctor who didn’t believe I was in as much pain as I said I was.
I’ve also had bad experiences with female doctors, but in general I’ve found that they are better choices than men in these situations.
This is of course not easy. Most hospitals have tried for decades to reduce prescriptions to patients on unnecessary pain medication, and for good reason: the opioid crisis in this country is very real.
But also endometriosis pain. There were times when prescription pain medication was the only way to overcome the pain that I was experiencing.
I ended up talking to my doctor about my experience in emergency rooms. In the end, she prescribed me a prescription for a very small number of strong pain relievers that I had on hand.
I kept them in the back of my medicine cabinet in case the pain is too great to treat. I only had to reach for them twice while developing cysts that I ultimately decided not to go to the hospital for.
This is not a decision I would ever recommend to anyone else. In my case, I felt I knew my body well enough to make this call. I just wasn’t ready for the torture that I knew an emergency doctor visit would take.
It’s been almost a decade since I’ve needed something this powerful. Excisional surgery with one of the best endometriosis experts in the country literally gave me my life back. As a result, I no longer had to make those awkward trips to the hospital.
A few years ago I found this bottle of pain reliever in the back of my medicine cabinet. It still had three pills, long expired.
I put it in a jar I had filled with bacon fat, unscrewed the lid, and threw it all away.
I hope I never find myself in this position again. But more than that, I wish no woman had ever done it.
It’s not okay for our pain to be treated so differently from men’s. It’s not fair that we have to fight so hard to be heard. But knowing what to expect and using the tips above to prepare yourself are things you can do to make the experience as painless as possible.
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