When it comes to your health, it’s your right to fight for it because you are your biggest advocate. In Shondaland’s Women’s Health series this month, we’re offering insight and advice on how women can take their physical and mental well-being into their own hands so they can lead happy, healthy lives.
Amy Weirick started getting a period late last summer. This sounds perfectly normal, except for the fact that the 60-year-old had been without one and in menopause for almost 10 years. The travel publicist consulted one of her best friends, a woman who experienced similar symptoms as Weirick and was later diagnosed with Stage 4 ovarian cancer. “She immediately called me, and she’s not a phone person. She’s a texter,” Weirick recalls. “I knew when I saw her name pop up [that] I should be freaking out.”
The Columbus, Ohio, native immediately reached out to her gynecologist, but her request for an appointment wasn’t met with urgency. “It was this laissez faire approach, even at the making of the appointment,” Weirick says. She was finally scheduled to receive an ultrasound and biopsy, and later received a voicemail saying that she didn’t have cancer despite the bleeding. She called back with questions and was met yet again with a terse demeanor.
“I’m sorry to be a pain in the neck,” Weirick told the doctor she was speaking to, “but you said, ‘You don’t have cancer.’ Well, I need to find out what’s causing the bleeding. Why am I bleeding?’” The doctor told her to keep an eye on it, and Weirick thought to herself: “No. You don’t just keep an eye on ovarian cancer if that’s indeed what it is.”
After being connected with a new doctor at the Ohio State University Comprehensive Cancer Center through another friend, she was surprised by their immediate concern and compassion. “I just started crying because I was like, ‘Finally! Somebody who’s listening, who isn’t acting like I’m crazy, because I felt like people thought I was crazy.”
Weirick received a preventative hysterectomy, as suggested by the doctor. A day after the surgery, the surgeon sat her down and told her they found a granulosa-cell tumor — a tumor the size of a peanut M&M that causes a rare type of ovarian cancer accounting for approximately 2 percent of all ovarian tumors.
“I realize I was so lucky,” Weirick says. “I am cancer-free and didn’t even have to have chemo, which is very unusual with ovarian cancer. I wonder if I was spared because I have such a big mouth, and [now] I can share with others the importance of being your own advocate and taking your well-being into your own hands.”
Research shows that 12 million people are affected by diagnostic errors in the United States each year, and that an estimated 40,000 to 80,000 people pass away because of diagnostic failures each year. No one is immune to these deadly and near-fatal mistakes, including tennis star Serena Williams.
In a personal essay for Elle, the athlete penned that her severe pain was dismissed after giving birth to her child. “No one was really listening to what I was saying,” she wrote. After insisting several times with multiple people on the medical team, she received a scan, which revealed a blood clot in her lungs. “Being heard and appropriately treated was the difference between life or death for me.”
It’s true: Women and minorities are far more likely to be misdiagnosed by doctors than their white, male counterparts. Additionally, research conducted in 2020 by the University of Michigan found that one in five people have been discriminated against in a health-care setting, including mental health institutions.
“As a woman of color, assumptions are made,” says Miri Rodriguez, owner of the Miami holistic well-being shop Be Mindful Be Happy and senior storyteller at Microsoft, of her own complicated medical diagnosis journey. “It would’ve been a completely different story had I not listened to that gut feeling going, ‘No, I think something’s wrong.’”
Rodriguez went through a similar situation as Weirick. Five years ago, she began experiencing continual bleeding that didn’t let up. Her ob-gyn at the time chalked it up to stress. The brand consultant actively pursued relief through yoga and meditation, but she had a feeling it might be something more.
After she managed the excessive bleeding over the years, a new doctor asked Rodriguez a wide variety of questions during the patient intake process and told the 43-year-old that the bleeding didn’t sound right. The doctor suggested additional genetic testing; Rodriguez was diagnosed in February 2021 with the BRCA type 1 mutation gene. With the information and options she received, Rodriguez took preventative measures and underwent a hysterectomy.
“It saved my life,” Rodriguez says, “because a doctor was intuitive and said, ‘You know what? Let me check this out. Do you want to take the test?’” Rodriguez believes that had she not persisted in finding a doctor who aggressively responded to her condition, she might not be here today.
As a woman and a Latina, Rodriguez says it became important to seek out a doctor who would “partner” with her. “I’m a first-generation immigrant from Venezuela, and they look at me, and they’re probably thinking, ‘She doesn’t have insurance, or she doesn’t have the money.’” Rodriguez found a doctor who didn’t hold back in presenting options and was invested in her outcome. “Health care,” Rodriguez notes, “is about caring.”
Ultimately, getting the care you need begins with caring for oneself. “We are nurturers and caretakers. This is natural to us,” Rodriguez says about women. “And we forget to take care of ourselves first.” She urges women to listen to their bodies and trust their gut. “You are the expert of your body. You know what’s happening. The doctors are speaking from an outside perspective, and they are the experts in medicine, but you know your body. You have to know what’s going on.”
Dr. Leslie Saltzman, a doctor of osteopathic medicine and chief medical officer of Ovia Health, says, “Even though I’m a doctor, I actually believe that the patients know their bodies better than we do. I think it’s important that people, if they think something’s wrong, trust that.”
Listening to your body and receiving the care you deserve is critical for all types of pain and concerns, especially if it is continuous. You don’t have to break up with your doctor just yet. Here’s how to go about asking for what you need — or if it comes down to it, how to seek help elsewhere.
Talking to your doctor
Depending on the time of year or the number of patients being seen, you may have trouble scheduling a timely appointment or be met with a laid-back approach once you do. If you feel as if time is of the essence, don’t hesitate expressing urgency before, during, or after your appointment. “To women who are having trouble,” Weirick says, “just keep pounding the door until somebody lets you in.”
Be as detailed as possible
Don’t be afraid to get into the nitty-gritty specifics surrounding the experience you’re having. Verbalize duration, intensity, relevant background information, and any other history that can help your provider get you the right type of help. “There are different ways to phrase things to open up more conversations with your primary-care provider to kind of get what you need,” says Dr. Raenell Williams of Sentara Family & Internal Medicine Physicians.
Saltzman encourages women to follow up — either during the appointment or afterward — and ask for additional advice or clarification if they’re concerned. “Doctors are human, and sometimes we are distracted,” she says, “or we are running behind, and we are trying to tie up the visit quickly, or maybe we did miss something that the patient said.”
If you’re not sure how to go about this, Williams suggests you say to your doctor: “I know this may seem simple or silly to you, but I don’t know what you know. So, can I ask more questions so that I feel comfortable?”
Ask about all of your options
Rodriguez spoke with about five reconstructive surgeons before learning about one specific option that would be right for her body. “A lot of them were saying, ‘Well, it’s too new. We don’t know. We can’t guarantee.’ Well, tell me about it first, and then let me make the choice,” she says.
It’s okay to be curious when it comes to your well-being. A good doctor will not tell you one thing; they will give you options, inform you about the risks and possibilities of each, and let you decide. “Everyone should know what options they have,” Rodriguez says. Then you can be proactive, make your own decisions, and own your destiny.
Let your doctor know how you feel
Realize that a doctor-patient relationship is just that: a relationship. Like any other, it might involve extra communication at times. “If you typically have a pretty good, trusting relationship, and you feel comfortable with the physician or the provider that you’re seeing, I recommend that people reach back out to them,” Saltzman says.
Let your doctor know in a constructive way — by phone, email, or in person — that you don’t feel heard or supported and that you are still concerned. It doesn’t need to come from a place of malice; in fact, addressing it can deepen your existing relationship. If you ultimately decide to part ways with your doctor because they are not receptive to this, call the office and share your experience. It may help improve the standard of care for the women who come behind you.
Vetting a new doctor
Seek out a specialist
“As a family-practice doctor, of course, we see everybody, and we’re the first line,” Williams says. Although you may have a great primary-care physician, sometimes the area of expertise needed may extend beyond their sphere. In this case, it might be smart to seek out a specialist or ask your doctor to refer you to one if you have specific concerns.
In Weirick’s case, seeing a gynecological oncologist after visiting her ob-gyn further addressed her concerns and provided her with the extra care she needed. If you find that your specialist isn’t working for you, Saltzman says you can go back to your primary provider and ask, “Can you recommend someone else? I’d like to get another opinion.”
Switch doctors within the practice
If you don’t feel as if speaking directly to your doctor is the right move for you, or if your concern is not addressed to your liking, Saltzman encourages women to call the practice and ask if there is someone else you can see. “This happens all the time,” she says. “People switch providers, and that’s fine as well. Doctors aren’t necessarily upset by that.”
Use your network
An old-fashioned recommendation does wonders. Whether it’s with a close friend or a trusted coworker, share that you aren’t happy or comfortable with your provider and ask if they like the doctor they see regularly.
“If you keep asking enough people, somebody will say, ‘Oh, these guys are awesome. Call them,’ and indeed, they’ll be awesome,” Weirick says. “I think when you do have a good experience, share that with other people so that they know.” You can also call your insurance provider and ask for a list of doctors within your region.
Do a detailed search
When Rodriguez felt like she wasn’t getting the physical and emotional care she needed from one doctor, she began researching others on her own for the next two to three months. She made a list of the 10 doctors she wanted to talk to and created files on each based on online reviews and other information. “I would call, and then sometimes I’d get in, and sometimes I wouldn’t,” Rodriguez says. If you can’t get through to a certain doctor, then it might be a sign that they’re not the doctor for you.
Don’t be afraid to ask questions
Once you find a new potential health-care provider, don’t just ask questions about your health; ask questions about how they approach their care. When Rodriguez was vetting new doctors, she came prepared with a list of questions and asked them all the same inquiries. The last question on her list was “If this was your daughter or your sister or your wife, would you recommend the same thing?” The doctor she ended up choosing was the one who told her yes.
Locate and talk to others who have had similar experiences. “There are a million different Facebook groups of survivors and women who are fighting this battle,” Weirick says. “You can find people who will tell you how they got through it.” Emotional support goes a long way, as does advice from women who have gone through the experience themselves. With that being said, health is specific to each individual; be sure to ultimately connect with a medical provider you trust before accepting medical advice.
Don’t give up
Weirick urges women with concerns to ignore the naysayers — even if they’re coming from your closest friends or family members. “Don’t take your advice from people who don’t share your concerns,” she says. If your symptoms are consistent, it’s better to err on the side of better safe than sorry and get it checked out. It’s your right to find somebody who will take your health as seriously as you do.
“If that doctor is not listening or not letting you in, keep going, even if you have to drive an hour to see somebody,” she adds. “Because you’ll find a doctor who cares enough to listen to you and take your concerns seriously.” Don’t be discouraged or let your health fall by the wayside. There is a doctor out there for you.
Mia Brabham is a staff writer at Shondaland. Follow her on Twitter @hotmessmia.
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