Uncool Things Doctors Have Said to Me
Endometriosis has caused lots of problems for me over the past 25 years: backaches, period pain, impossible sex, migraines, diarrhea, repeat UTIs. I'll stop there, but you get the picture. I've seen a lot of doctors. Many were unhelpful. Some were just plain mean.
So I always believe people when they say someone dismisses their pain or doesn't believe their symptoms are real. Those things have happened to me, too. More than once.
But not everyone interacts with health care professionals all that often. They aren't "frequent fliers," as a doctor once called me. So they don't really understand why a medical professional would act like that with their patient. In my experience, it's because people with endometriosis are like puzzles. And doctors get frustrated when they don't know where the pieces go.
Here's how one excision specialist I interviewed explained it to me: Most of the time, doctors see patients with straightforward, solvable health issues. For example, you have a bacterial infection or even a tumor. That shows up in a test or a scan. There's an answer with a standard treatment plan. But endometriosis doesn't work that way. And doctors can get upset — sometimes shifting blame to their patient — when they can't "fix" us.
That doesn't excuse bad behavior, but it does offer an explanation. With that said, here are some of the phrases I remember most.
"That's not possible."
I told one of my doctors birth control pills made my symptoms worse. And she flat out told me she didn't believe me. I told her I tried about seven different kinds, and they all made me feel like I had menstrual cramps all month long. I told her I'd also tried the Nuvaring, and it didn't help either. She never believed me. When I refused to go on another hormonal birth control, she told me there was nothing else she could do for me.
(This same doctor had previously told me that it wasn't possible for a UTI-focused antibiotic to give me a yeast infection every time I used it. She only believed me because my repeated vaginal exams said otherwise.)
"It can't hurt that bad."
I heard some version of this from many adults — family members, medical professionals, teachers — when I was in middle school and high school. At first, it was in reference to my period pain. At 13, it gave me blurry vision and made me vomit. But no one gave me anything other than ibuprofen. I heard the term hypochondriac a lot.
I was a freshman in college the first time I heard this from an OB-GYN. It was my first pap smear. I screamed and cried, instantly. The OB-GYN — who was a woman — insinuated I was being dramatic. She laughed and said the nurses down the hall asked what was going on. I never went back to her. I later learned that there are different sizes of speculums and she used one that was too large.
I also got headaches so bad I thought maybe my doctor should look for a brain tumor. Absolutely no one took this seriously. I was in my mid-20s when I learned I actually had migraines, and there was a treatment for them.
(After my endometriosis was surgically diagnosed at 24, doctors did actually take my pain more seriously. I didn't get great treatment for it, but they didn't think I was making it up.)
"There's nothing physically wrong with you."
If you have endo, you've probably gotten some version of the "it's all in your head" label. I think there is some truth to central sensitization, and antidepressants can help lessen some symptoms. But that wasn't the answer to my cyclical hip and leg pain. Thankfully, my physical therapist believed me. More importantly, she actually helped.
"It's difficult to treat patients when they don't take the treatments offered to them."
Basically, this was my (female) doctor's way of telling me I was a "difficult" patient. And I wasn't getting better because I wouldn't follow directions, not that her treatment was wrong for me. The idea that we should come up with a plan I was comfortable with never came up.
Here's what happened: It was 2018, and it was my second visit with a new OB-GYN. It was really disappointing, because our first visit had gone great. She validated all of my concerns. But when my ultrasound came up clear — my nausea and pain was not from a visible cyst on the ovary — and I told her I didn't want to have a hysterectomy or try hormonal suppression, she started with her "difficult" speech.
What made it even worse was there was a student nurse in the room. And she spoke about me in third person, as if I wasn't even there.
"Maybe it doesn't have anything to do with endometriosis?"
This was the same OB-GYN who said I was difficult. One of my chief complaints these days is some cyclical diaphragm cramping and stomach/bowel issues. She told me extra-pelvic endo is "too rare" to check for. She followed that by saying that my "food issues" probably have nothing to do with endo.
I think she said this so she didn't have to treat me anymore. That's fine by me. Now I have an appointment with an excision specialist in March.
What % of endo warriors from our In America survey have both migraines and endo?