For most of my life, I struggled with painful periods. My symptoms came with fury every month: debilitating cramps, heavy bleeding, large clots, nausea, and diarrhea. Painkillers alleviated my pain only briefly, and thanks to side effects, hormonal birth control wasn’t much help, either. Over the course of nearly two decades, I saw a string of gynecologists who shrugged their shoulders when I recounted just how much my period disrupted my life; some people just have bad luck, they said. I was angry at my body and embarrassed I couldn’t handle the pain the way most people I knew were able to. In late 2021, I finally found a physician who diagnosed me with uterine polyps. It felt like a miracle to be listened to. After having the polyps removed, my periods have been a breeze. Long gone are the days of being unable to leave my bed and having to cancel all my plans.
Looking back, I’ve often wondered how much sooner I could have been diagnosed had I had the knowledge and vocabulary to advocate for myself at the doctor’s office. When I told the OB/GYN who diagnosed me about my symptoms, she said we should go ahead and do blood work and a transvaginal ultrasound just to be sure that everything was okay. I had no idea these were procedures I could ask for. I also didn’t know how to get my doctors to listen to my pain.
And I’m not alone: According to a recent survey, 29 percent of women ages 18 to 64 reported that their health provider had dismissed their concerns. “The assumption that only doctors know and that everybody else is an idiot is really prevalent inside medicine. And in our larger society, we trust doctors. Like, doctors are infallible,” says Tracey Lindeman, who wrote Bleed: Destroying Myths and Misogyny in Endometriosis Care after struggling for more than two decades to find a physician who would take her endometriosis and adenomyosis symptoms seriously. “It’s this huge power imbalance that is really hard to overcome.”
So what can a patient do? I spoke with Lindeman and Dr. Hugh Taylor, chair of the Department of Obstetrics, Gynecology & Reproductive Sciences at Yale School of Medicine, to find out.
Pay close attention to any changes in your period.
Most patients will experience some uncomfortable symptoms during their period, Taylor says, and that experience should stay pretty consistent across a person’s life, from the moment they first menstruate until they enter menopause. “But if that changes, that should set off an alarm bell,” he says. Changes in how regularly you get your period, how long you menstruate, and how much you bleed, as well as feeling pain that disrupts your daily life, should definitely be investigated. “Whatever your menstrual-cramping baseline is at an early age, it shouldn’t get worse over time,” Taylor says. Other things to keep an eye on include abdominal swelling, spotting in between periods, pelvic pressure, and frequent urination or constipation.
Bring notes and a list of questions to your appointment.
If you notice any changes to your cycle or new symptoms crop up, make sure to document them. “Keep a calendar for a few months: When your period starts and stops, get a sense of how heavy it is, how many days it lasts, how saturated your pad or tampon is, and how frequently you have to change it if bleeding is the issue,” Taylor says. He also suggests recording any episodes of feeling faint, weak, or fatigued around the time of your period. Are the symptoms precluding you from doing your daily activities or impacting any specific areas? You should share that with your provider, too. “It’s about understanding baseline pain, how it’s changed, and how it’s affecting someone’s life,” he says.
Bring those notes with you to your next appointment, and make a list of everything you’d like to discuss with your doctor, including questions to ask. Sometimes it can be helpful to bring along a family member or friend to the appointments as support, experts say.
Do your own research.
Taylor says you can look up scientific studies and read other trusted online medical advice. Lindeman, who used to bring research papers to appointments, pointed out online communities as another helpful space to find advocates and patients who are facing similar symptoms. There’s a range of possible reproductive-health conditions that may be making your periods worse. These can include endometriosis, uterine fibroids, polycystic ovary syndrome (PCOS), adenomyosis, pelvic inflammatory disease, and uterine polyps.
“You shouldn’t be afraid to bring up your suspected diagnosis,” Taylor says. “If you say, ‘I think I might have endometriosis. Have you considered that? What do you think?,’ sometimes that forces the conversation and you can advocate for yourself.”
Ask about specific tests and exams.
Based on your research, you can inquire about which tests are available, Taylor says. Depending on the potential diagnoses the provider is thinking about, these can be pelvic exams, lab tests, or a pelvic or transvaginal ultrasound. For example, blood testing can help diagnose PCOS, and an ultrasound can detect fibroids, says Taylor. And while laparoscopic surgery and a biopsy have been the standard of care for diagnosing endometriosis, he says these days more providers take down a careful history of the patients’ symptoms and use imaging such as ultrasounds or an MRI to look for signs of it. In instances when there may be an issue with someone’s Fallopian tubes, physicians can conduct a hysterosalpingogram, during which a special dye is used on the Fallopian tubes and uterus to take an X-ray.
And in my own case, providers did a hysteroscopy, which entailed inserting a thin tube with a camera to see inside my uterus. That procedure allowed them to both confirm my diagnosis of uterine polyps and remove them at the same time.
If your doctor doesn’t take your concerns seriously, try to find one who specializes in menstrual disorders.
First, know you are not alone, Lindeman says. This is unfortunately very common, especially for conditions such as hers. “Generalist family practitioners and generalist OB/GYNs, they don’t actually know a lot about endo,” she says. “Endometriosis is a very small blip in medical school. It’s only people who choose to specialize in these conditions that actually know anything legitimate about the disease, typically.”
Because of this, patients should remember they are the experts in their own bodies, Taylor says. If you are not being listened to, you should not be afraid to find a new doctor. He recommends looking for providers who specialize in menstrual disorders. “Some OB/GYNs are more in tune with delivering babies, and you need somebody who’s gonna really take gynecologic concerns very seriously and has expertise in that area,” he says.
Of course, due to the challenges of the U.S. health-care system, finding a new provider may not be accessible to all patients. Taylor says that, in those instances, people should still push for a second opinion, even if it’s asking to see another doctor within the same clinic. “You need a health-care provider who you have a good relationship with, who listens to you, who takes your concerns seriously,” he says.