What do you do when your doctor won\u2019t listen to your concerns that something is wrong with you or your preborn baby? What does self-advocacy during pregnancy look like when there\u2019s a doctor-patient power differential, when the person with the medical degrees is telling you there\u2019s nothing to worry about, but your body is telling you there is? And how does experience with charting your body\u2019s signs of fertility through fertility awareness prepare you to self-advocate?<\/p>\n\n\n\n
Natural Womanhood recently interviewed podcaster and former Broadway actress Stacey Sumereau<\/a> about the crash-course in self-advocacy she learned from two complicated pregnancies\u2013and why she believes fertility awareness helped lay the foundation she needed for speaking up and being heard when the stakes were high. <\/p>\n\n\n\n In late December of 2020, when Stacey was in the third trimester of her third pregnancy, she suddenly began to experience facial and hand swelling, and her blood pressure spiked. Knowing that these could be signs of preeclampsia<\/a>, which comes with many risks for mom and baby, Stacey brought her concerns up to her doctor. But because her blood pressure was not clinically high enough (according to generic parameters), her doctor brushed aside the fact that it had shot up over 40 points from Stacey\u2019s personal normal levels. <\/p>\n\n\n\n A week later, at 32 weeks pregnant, Stacey awoke in the middle of the night and discovered that she was bleeding\u2026badly. Once at the hospital, she learned that she was suffering a placental abruption, the complete detachment of the placenta (the baby\u2019s nutritional and oxygen lifeline) from the uterus before<\/em> delivery. Stacey herself suffered a life-threatening hemorrhage, and her daughter Honora (\u201cNora\u201d) was delivered emergently via C-section. <\/p>\n\n\n\n Nora required 22 minutes of CPR. Prolonged lack of oxygen during that time led to four surgeries, multiple life-threatening infections, a diagnosis of cerebral palsy, and 126 days in the NICU before Nora could go home. To this day, little Nora receives 100% of her nutrition through a feeding tube, and has a medical team of over a dozen specialists and therapists. <\/p>\n\n\n\n In spring of 2022, Stacey became pregnant with her fourth child. When she experienced warning signs that all was not well this time around, she was surprised to once again have her concerns pooh-poohed, even with her history of placental abruption and Nora\u2019s traumatic birth. But this time, the veteran NICU mom wasn\u2019t having it. She recounted, <\/p>\n\n\n\n \u201cI realized very quickly that my relationship with medical personnel was very different. There was no more me going into something blind and just accepting what the doctor said. The way I used to operate [before Nora\u2019s birth] was that I was afraid to take up too much of the doctor\u2019s time.\u201d <\/p>\n<\/blockquote>\n\n\n\n Now, Stacey understands all too well, \u201cYour health is on the line, your life may be on the line, and the doctors are there for you<\/em>.\u201d<\/p>\n\n\n\n At her first-trimester ultrasound scan, Stacey learned that she had a retroverted (tipped backward) uterus<\/a>, which in and of itself isn\u2019t necessarily concerning, and affects an estimated 25% of pregnant women. But starting at ten weeks, Stacey found that when she woke up each morning, she was completely unable to urinate for up to an hour. <\/p>\n\n\n\n Stacey\u2019s husband, who is a sonographer, had previously seen one case where a woman with a retroverted uterus and significant difficulty urinating was diagnosed as having an incarcerated uterus, a rare and serious condition affecting 1 in 3,000 to 10,000 pregnancies, according to the physician resource Up to Date<\/a>. Whereas a retroverted uterus will usually resolve by itself by the second trimester, a persistently retroverted uterus in the second trimester (and beyond) can become trapped, or \u201cincarcerated.\u201d <\/p>\n\n\n\n Stacey summarized what an incarcerated uterus is succinctly, saying:<\/p>\n\n\n\n \u201cIn very rare instances, the [retroverted] uterus will not straighten up. The way I would describe it is that my uterus would beat everyone else\u2019s at limbo. The baby was tipped backwards, and my bladder was getting pushed up into where my baby bump should have been, and the baby was growing into my backbone, basically. There\u2019s not enough room, the baby is trapped in your pelvic bones and can\u2019t grow beyond a certain point.\u201d <\/p>\n<\/blockquote>\n\n\n\n But the nurse at the doctor\u2019s office dismissed Stacey\u2019s call, telling her she had a urinary tract infection. When Stacey requested an appointment right away with her doctor, the nurse demurred, telling her that there were none available. Stacey responded by \u201casking a question in such a way that they would be legally liable for not seeing me. So I said, \u2018Does my situation warrant me waiting until my next [regularly scheduled] appointment, or, if something bad were to happen to me, would an appointment have prevented this?\u2019\u201d <\/strong><\/p>\n\n\n\n With the phrasing of just one question, Stacey observed, <\/p>\n\n\n\n \u201c[the nurse\u2019s mindset shifted and] It was no longer that I was just this whiny, overanxious pregnant woman, but that I was really asking from a place of \u2018you are my care team. I am reaching out to you. If you won\u2019t give me an appointment and something happens, what are you going to be on the hook for?\u2019\u201d <\/p>\n<\/blockquote>\n\n\n\n The nurse suddenly found a spot for a next-day appointment.<\/p>\n\n\n\n Unfortunately, her doctor\u2019s demeanor and words the following day raised further red flags in Stacey\u2019s mind. \u201cThe doctor said in her first breath that she\u2019d never heard of this condition before, an incarcerated uterus. And in her second breath, she told me I had nothing to worry about.\u201d But Stacey knew that incarcerated uterus\u2013which is confirmed via ultrasound results showing that a retroverted uterus has not resolved by the second trimester\u2013can cause devastating fetal complications like miscarriage, and\/or serious maternal complications like uterine rupture. The woman whose case Stacey\u2019s husband had previously heard of had been taken to emergency surgery. <\/p>\n\n\n\n Stacey noted that \u201cYou know if something is wrong with your body.\u201d<\/strong> If your doctor doesn\u2019t listen to you, her second tip for self-advocacy during pregnancy is \u201cyou have every right to seek a second, third, fourth opinion.\u201d In the weeks that followed, Stacey visited eight doctors in her search to find one willing to take her seriously. She also went to the ER because one morning she was unable to pee at all. She had a urinary catheter placed and immediately drained an excessive amount of fluid. The doctor said, \u201cIf that was a baby, it would be a two and a half pound baby!\u201d Stacey was discharged home after being taught to self-catheterize. <\/p>\n\n\n\n Stacey’s third tip for self-advocacy during pregnancy is to find a supportive doctor. Providentially, a chance encounter several weeks later between Stacey\u2019s dad and a woman at his church led Stacey to a doctor who could help her. The woman herself had experienced an incarcerated uterus no less than four times, and twice had lost a baby\u2013one at seventeen weeks, and another at nineteen weeks. The doctor Stacey was referred to treated her respectfully from the start, indicating with his tone and body language as he listened attentively to her experience that he had all the time she needed. After she finished talking, he said simply, \u201cLet\u2019s see if we can fix it.\u2019\u201d<\/strong><\/p>\n\n\n\n Stacey recalled, \u201cWithin ten seconds he fixed it. The way that they fix it is by literally pushing up the uterus,\u201d either vaginally or rectally. If that doesn\u2019t work in an office setting, the uterus may be manipulated in a hospital under anesthesia, or even via surgery in the operating room. Stacey called the manipulation brief but very uncomfortable, and described the sensation afterwards as \u201cfeeling like a giant bubble was rising up in my belly.\u201d <\/p>\n\n\n\n After the manipulation, the doctor asked Stacey about her plans for labor and delivery, referred her to a specialist from a teaching hospital, and planned extra ultrasounds. And while more than one previous doctor had told Stacey she should just avoid pregnancy altogether because of her history of placental abruption, the new doctor was encouraging, nonjudgmental, \u201cextremely supportive,\u201d and clearly ready to facilitate a healthy rest of the pregnancy for both Stacey and her baby. <\/p>\n\n\n\n The fourth powerful lesson Stacey learned about self-advocacy during pregnancy is how to get the information you need during an encounter with your healthcare provider. Now, during check-ups, Stacey says, <\/p>\n\n\n\n \u201cMy rule of thumb is to try to put myself in the future, describing my doctor\u2019s visit to my family\u2013my husband, my parents. And when they ask me questions like \u2018well, what does this mean? Or, what happens if this happens? Or, what\u2019s the plan if this thing happens?\u2019 When they ask me all those questions, I want to have answers for them.<\/strong> I want to ask enough questions so that I can sleep at night\u2013 \u2018this is our plan of care, this is where we\u2019re going, this is why the doctor either thinks this treatment is appropriate, or I don\u2019t need treatment right now.\u2019\u201d <\/p>\n<\/blockquote>\n\n\n\n Like many moms, Stacey knows:<\/p>\n\n\n\n \u201cIt\u2019s very easy for me to advocate for [my children]…it\u2019s harder sometimes to advocate for myself because \u2018oh, I can handle it. I can take it.\u2019 But [with Nora\u2019s pregnancy] I didn\u2019t advocate enough for myself, and that ended up almost costing my daughter\u2019s life and it could have cost my life too, easily. It\u2019s really not ever selfish to ask these questions. You don\u2019t want to end up cleaning up a mess, you want to prevent it.\u201d <\/p>\n<\/blockquote>\n\n\n\n Throughout their marriage, Stacey and her husband have charted her signs of fertility using fertility awareness (also known as natural family planning, NFP). Stacey described the lessons learned from using NFP, saying: <\/p>\n\n\n\n \u201cSex has consequences. Life is very, very precious. Using NFP also made us really put the good of the other person first and foremost above our own good. And when you have that in marriage, you can get through those hard times. Month in and month out when you are using natural family planning and are continually sacrificing and communicating with one another, instead of sex being automatically available all the time, that communication is going to serve you well. My husband is amazing and we communicate a lot, and I don\u2019t think we would have that communication at all if it wasn\u2019t for natural family planning.\u201d <\/p>\n<\/blockquote>\n\n\n\n All that practice communicating regularly, including about hard topics (as sexuality sometimes inevitably becomes) prepped Stacey to speak up for Nora during her 126-day hospital stay, and then to self-advocate in her fourth and current pregnancy. <\/p>\n\n\n\n Stacey shared her story in hopes of encouraging other women, especially pregnant women, to feel more confident with having hard conversations with their doctors. She summarized her advice, saying tongue-in-cheek \u201cYou don\u2019t need to be a diva,\u201d then continued, \u201cbut you have every right to ask every question in your head about your health.\u201d<\/strong><\/p>\n\n\n\n <\/p>\n\n\n\n Additional reading:<\/p>\n\n\n\n What to do when your doctor won’t listen to you<\/a><\/p>\n\n\n\n Is your doctor not listening to you? What to do when you experience medical gaslighting<\/a><\/p>\n\n\n\n Beyond the epidural: labor pain management options<\/a><\/p>\n\n\n\n So you’re going to give birth in the United States…what are your options?<\/a><\/p>\n\n\n\nA doctor\u2019s dismissal almost cost Stacey and her daughter their lives<\/span><\/h2>\n\n\n\n
How a traumatic childbirth experience gave birth to an empowered mother<\/span><\/h2>\n\n\n\n
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Retroverted uterus: concerning or not? <\/span><\/h2>\n\n\n\n
Incarcerated uterus: Always concerning<\/h3>\n\n\n\n
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Self-advocacy lesson #1: Learning to ask questions in a way that demands answers<\/span><\/h2>\n\n\n\n
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Lesson #2: Don\u2019t be afraid to ask for additional opinions<\/span><\/h2>\n\n\n\n
Lesson #3: A supportive doctor will make all the difference<\/span><\/h2>\n\n\n\n
Lesson #4: During a check-up, anticipate the questions your loved ones might ask about your visit<\/span><\/h2>\n\n\n\n
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How fertility awareness sets the stage for successful self-advocacy later on<\/span><\/h2>\n\n\n\n
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