A Starting Over at 60 Blog
This past week, the renowned medical journal, The Lancet, issued an apology. Specifically, the journal admitted a bias and ignorance toward women’s medical issues. In this case, they admitted they had gotten a diagnosis wrong. They had misnamed and mischaracterized a female condition known as PCOS, Polycystic Ovarian Syndrome.
It’s no surprise to any woman that the medical profession has little understanding of women’s bodies. We still— in this supposedly highly educated first world country— have a labor death rate on par with Papua New Guinea. In other words, we rank low. We deny pregnant women necessary medical care, even if it means the woman’s life is at risk. I still cannot resolve my rage over keeping Georgia nurse Adriana Smith on life support to allow her almost 9-week old fetus to reach a stage of viability. The baby was born prematurely at 25 weeks, weighing 1 lb. 13 oz. Today— nearly a year after his “birth”— the baby weighs 11 pounds and remains hospitalized.
Women’s health issues continue to be understudied. Both female-specific conditions as well as sex-based differences are severely underfunded. Some of the most understudied and misunderstood conditions include endometriosis, uterine fibroids, perimenopause and menopause, maternal and pregnancy complications, autoimmune diseases and female-presented cardiovascular disease. This is a hefty list. Understanding these issues in more detail has been hampered by the Trump administration’s prohibition of any gender or sex references in research applications to the National Institutes of Health.
All this makes The Lancet’s admission even bolder. The study, supported by global experts and patient organizations, acknowledges that the syndrome was misunderstood, misinterpreted and misnamed, leading to dismissing and ignoring women’s symptoms, delaying diagnosis and mischaracterizing some of the syndrome’s symptoms as being a woman’s fault rather than part of a whole-body metabolic and hormonal disorder. Many women experienced shame because of this.
I was one of them.
I have PCOS, now known as Polyendocrine Metabolic Ovarian Syndrome. It started in my early twenties, around 21 years of age. My body exploded, literally. I transformed from a 105-lb ballerina to a misshapen 300-pound person. It’s an odd transition, from silhouetted dancer to plumped and distorted balloon. I remember the start. I was finishing college with the dark awareness of decades of starvation. I would no longer starve myself, I determined. I would eat as a normal person eats: a bowl of cereal for breakfast, tuna sandwich for lunch, chicken or fish for dinner. In other words, I wanted to eat as a “normal” person. Except. Except normal didn’t work for me.
I gained weight rapidly. Other symptoms began. Hair sprouted from my chin and neck, dark patches developed on my inner thighs, and the hair on my head fell out in clumps. Desperate for answers, I visited doctors of many specialties.
One gynecologist sent me for an ovarian ultrasound. Such an ultrasound requires drinking 24-48 ounces of water 30 minutes before the procedure. This is done to allow the ultrasound to see the ovaries. I arrived at the testing place on time and reminded them I had drunk the required intake of water. They ignored me— for two hours— in spite of my reminding them repeatedly that I needed to urinate. By the time the staff called me to the exam room, I was crying from the pain.
After this test, I returned to the gynecologist. She told me this: “There’s something new scientists are calling Polycystic Ovarian Syndrome. It happens when the ovaries do not develop and mature. You get it when you’re obese, which you are. So lose weight.” And that was it.
Another doctor I visited for chronic bladder infections looked at me with disgust and pronounced my problem: obesity. The treatment: lose weight.
Another doctor marveled at the muscle tone I had “beneath all that fat.” He said, “there’s no reason for you to be so fat with so many muscles.” “You’re too young and pretty to be so fat,” he chided. I tried to explain that I did exercise, I did watch what I ate, but he had made his diagnosis and was no longer listening.
In my early thirties, I managed to lose weight through extreme deprivation. I ate heads of lettuce, entire celery stalks, countless carrots, so many carrots my urine turned orange. I started running five to seven miles daily. I almost reached my goal weight, but I got pneumonia, keeping me homebound for weeks. The weight loaded back on, even with my veggie-driven diet.
Once the weight increased, the trend didn’t reverse, no matter what I ate or how much I exercised. By this time I had met and married my first husband who did accept me as I was. To his credit, he never once called me names, shunned me or shamed me. We had moved to New York at this time. This led me to new doctors, supposedly the best in the country. I never got any other support. Bronchitis? You’re fat. Fatigue? Fat. Skin rash? Fat again. No matter the symptom, my obesity shut down any exploration, testing or support. If one doctor had done this, I could have blamed it on personal bias. But it wasn’t one doctor. It was all of them, male or female, old or young. My obesity blinded them from diagnosis. All could be explained with one word: obesity.
Many years later, my then husband and I decided to start a family. We knew we would need help. I had never used birth control and had not gotten pregnant. After seeing several fertility specialists, a good friend recommended a reproductive endocrinologist. Expecting the same “fat is my fault” diagnosis, I showed up for the last chance appointment. The doctor was thorough, more thorough than any I had ever seen. He took vials of blood, performed multiple ultrasounds, took biopsies. Expecting the same diagnosis— you’re fat— I arrived for my consultation. The doctor leaned forward on his desk, his eyes kind and reassuring. He said, “I don’t know how any doctor has missed this. You are a textbook case. You have Polycystic Ovarian Syndrome, PCOS. It’s an endocrine disorder. We are going to treat it.”
The doctor prescribed Metformin, a medicine used for insulin resistance and diabetes. The weight came off, fast, astonishingly fast. Soon, my then husband and I got the news: I was pregnant. It wasn’t an easy pregnancy. Besides unrelenting morning sickness, I developed gestational diabetes, not surprising given the PCOS. Warned of having a huge baby, I counted every carb and gave myself insulin shots. At 34 weeks, a bit early, I bore a 4 pound girl.
I am convinced if I had not found this doctor— thanks to my friend— I would have been childless. I ended up having two girls, stayed on Metformin, counted carbs and lost weight.
This is not to say my problems went away. I had other symptoms associated with PCOS. Night sweats and hot flashes are worse with PCOS, which may explain why I’ve been beset by these for more than ten years. The syndrome causes sleep disturbances too, explaining my difficulty getting a decent night’s sleep. Then there are the headaches, anxiety and impaired metabolism. With age, I have learned to manage these miseries through medication, diet and exercise. In fact, fitness is a huge part of my life. I exercise 4-6 days a week.
The Lancet tells us that 170 million women have PCOS. That’s one in eight, making the syndrome a common woman’s issue. While PCOS has been associated with lack of menses and polycystic ovaries, these symptoms, scientists now know, are only two manifestation of PCOS. The syndrome causes clinical and biochemical hyperandrogenism, insulin resistance and/or type 2 diabetes, liver disease, hypertension, cardiovascular disease, and androgen and hormonal disturbances, among many other issues. PMOS, as it’s now called, can lead to depression, acne, hirsuitism, alopecia, infertility and even endometrial cancer. This disease is a whole body syndrome, with no cure, affecting women throughout their entire lives, not just during reproductive years.
This is why The Lancet’s comprehensive study is so important. It moves the syndrome from shame to a disease just like any other. For years, women like me have blamed ourselves. If only we hadn’t gotten fat. If only we had exercised more, eaten better, been more positive, juggled eggs without breaking them (this last one is a joke, of course). Perhaps some things would have helped. More likely not. PMOS is a whole-body disorder. It’s not a woman’s fault.
The study is worth reading. I will share one point the scientists made:
The term polycystic ovary syndrome (PCOS) has long been recognised as inaccurate and potentially harmful. The following evidence-based considerations informed the need for a new name:
- The term polycystic ovary implies the presence of pathological ovarian cysts, which are not a feature of the condition. This misnomer contributes to misunderstandings among patients, clinicians, policy makers, and the public.
- PCOS encompasses diverse endocrine, metabolic, reproductive, psychological, and dermatological features. The current name reflects only one organ and fails to capture the disorder’s multisystem nature.
- Confusion arising from the current name can delay diagnosis and hinder effective communication between patients and health professionals, contributing to patient dissatisfaction with care.
- The reproductive focus of the name can reinforce stigma, particularly in sociocultural contexts where fertility carries high value. Many individuals report distress associated with the name itself.
- The misnomer complicates epidemiological classification, research comparability, and health system coding. A more accurate name is expected to improve scientific coherence, research funding, and policy alignment.
- International guidelines, expert groups, and patient organisations have repeatedly called for renaming, with serial surveys and workshops culminating in a mandate to change the name through a rigorous, global consensus process.
- A new name must support long-term clinical care, research, and global adoption, and enable a smooth transition from existing terminology.
This is what good woman’s health care looks like. Let’s hope researchers will next turn to other critical women’s health issues like keeping a rotting body alive so a sick baby can be kept alive via medical supports more than a year after being ripped from its host’s body.
Please purchase a signed copy of my book using my publisher’s link below. You will receive the book at the end of the year.
I would love to hear from you, even if, especially if, you disagree. Perhaps we can bring back the American tradition of debate. Please like and share this blog with others. Subscribe to receive it by email and go directly to the Walk the Moon website (www.walk-the-moon.com) to peruse the full collection of articles and updates. You can email me from the Walk the Moon website as well.
Walk the Moon 