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4 Red Flags to Watch Out for When Finding a Doctor to Treat Your PCOS

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Polycystic ovarian syndrome, or PCOS, is a hormonal disorder that can involve a wide range of symptoms. I was diagnosed two years ago, after my period went from perfectly timed to increasingly irregular. The other symptoms soon set in: intense hunger and carb cravings, dizziness, pelvic pain, weight gain, and excessive hair growth.

In these two years of having PCOS, I’ve struggled to find a doctor who makes me feel heard and like I am getting helpful treatment. Instead, I’ve encountered red flags from multiple doctors. At the time, I didn’t realize they were problematic. I accepted them as the truth because they repeated the common narrative from medicine about PCOS. With hearing others’ negative experiences and reflecting on my own, I’ve come to see how harmful the “normal” treatment of PCOS can be. The medical world needs a change, and especially for this issue that mostly affects women.

Some red flags I’ve identified are:

1. Being hesitant to run tests.

How often are women-identifying patients dismissed and told their concerns are “just anxiety” or not actually a big deal? I don’t even want to know the statistics. Stemming from the former diagnosis of “hysteria,” too often women are not believed. We are told that abnormal bleeding is normal, that pain we feel as severe is mild, and that we don’t know our own bodies best. If a doctor dismisses concerns you feel are well, concerning, go ahead and switch doctors. PCOS can affect a variety of hormone levels, and blood tests can illuminate this. On a positive, my second, current ob/gyn was willing to do a pelvic ultrasound when I had left pelvic pain, to see if it was a rupturing ovarian cyst. However, when it wasn’t a rupturing cyst, I was told to call back if the pain continued, repeatedly for over a year. We still haven’t figured out why I have pelvic pain.

2. Prescribing birth control and dismissing concerns, unless you want to get pregnant.

I have heard countless stories that after a diagnosis of PCOS, the patient was essentially told, “Here is some birth control. Come back when you want to get pregnant.” And I am one of those stories. I was prescribed birth control to “even out my hormones,” and told it wouldn’t be much of an issue until I was trying to get pregnant, not to mention that I wasn’t even asked if I want to have children in the future. For months, my symptoms continued to worsen. I would get extremely hungry again within an hour of eating, and then I would feel even worse after eating, with dizziness and hot flashes. My hormones, insulin, and glucose were clearly off. PCOS is so much more than a fertility issue. A new doctor was willing to prescribe metformin, which helped reduce the symptoms, but it went untreated for months first.

3. Putting it all back on advice to lose weight.

My new, “better” ob/gyn was willing to run tests and prescribe metformin, and made me feel more heard than the previous doctor. But I have lost count of how many times he brings up weight loss. It is essentially at every appointment. He presents weight loss as the golden solution to cure my PCOS, completely ignoring the fact that PCOS is why I gained weight, not the other way around. It was the intense hunger and insulin resistance of PCOS that led to my body’s changes. And regardless, because of my mental health and previous body image issues, even when I was much skinnier, I am not interested in trying to lose weight. I engage in joyful movement and I feel fewer symptoms on the metformin. I finally asked to stop being weighed at my last appointment. The nurse seemed confused at first, but then no one brought it up during the rest of the appointment.

4. Making you feel like PCOS is your fault.

On a similar note, when my doctor prescribes my losing weight as the main and only cure to PCOS, it makes me feel like PCOS is my fault. It makes me think that if I had managed to stay skinny or ate less despite my hunger, maybe I wouldn’t have developed PCOS. But that isn’t true. PCOS isn’t my fault. The symptoms and hormonal imbalances are not my fault. I’m still working on finding a doctor that makes me feel understood. Everyone with PCOS deserves affirming and helpful care that makes them feel listened to rather than blamed.

It can be incredibly difficult to find an affirming doctor to treat PCOS, but at least these red flags can be something to watch out for.

What about green flags though? Here are some ideal signs I’m looking for in a doctor:

1. Doesn’t mention weight or BMI.

I follow the Health at Every Size, or HAES, medical thought. Weight is one number that says very little about someone’s actual health, excluding symptoms and other health measurements, like blood levels of hormones. And BMI is a completely bogus, made-up math problem that doctors still insist on using, despite its inaccuracies with reflecting health. I would be amazed if I walked into a doctor’s office and I was first met with conversation, not instructions to step up on a scale. If they need to weigh me for medical reasons, I would love a doctor who respected my wish to not know the number.

2. Asks if getting pregnant is a goal, and otherwise doesn’t mention it.

Seriously, is my only worth as a uterus-owner the potential to get pregnant? I don’t mind a doctor asking if I am trying to get pregnant, but if the answer is “no,” it should not be our focus. Enough said.

3. Makes me feel heard and validated.

Overall, the main thing I’m looking for in a doctor is someone who makes me feel like my concerns are real and that we will work together to address them. That shouldn’t be so hard to find. I especially get nervous at the doctor, so having someone who waits for me to feel comfortable to talk or who asks prompting questions would be so helpful to my ability to express myself. It would be amazing to leave an appointment feeling like I said everything I wanted to say, and more importantly, that it was heard.

Getty image by Andrew Brookes.

Originally published: March 16, 2022
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