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My PCOS Diagnosis
Medically reviewed by Dominique Fontaine, BSN, RN, HNB-BC, HWNC-BC — By Simone Marie on September 29, 2022 Welcome to Diagnosis Diaries. Throughout this series, we'll share real stories from real people about receiving a diagnosis for a chronic condition. Share on PinterestIllustration by Bailey MarinerIt was June 2017, and I was walking with my husband and dog in New York City when it hit me: I didn’t get my period this month, or last month. Worse, I couldn’t remember when I’d last had it. My first thought was: Am I pregnant? We’d been pretty safe, so it seemed unlikely. But it wasn’t impossible. I didn’t want to worry my husband, so I asked if he minded if I quickly ran into the pharmacy. Since we had the dog, he’d have to wait outside. It seemed like an easy way to grab a few things (pregnancy tests included) without sounding the alarm. He agreed, so within a few minutes, I had bottled water, some ibuprofen (we were always running out), a few things to fill the bag, and, of course, a three-pack of pregnancy tests. I even paid a couple extra dollars to get the digital ones — better to know for sure. When we got home, I slipped into the bathroom to take one of the tests, and — to my relief — it was negative. But my period didn’t come that week. Or the following week. Or the one after that. I took the remaining tests in that kit, then bought another pack. All negative. By July, I was concerned. Why wouldn’t I be getting my period if I wasn’t pregnant? Looking for answers
I scheduled an appointment with my gynecologist for the following week. It was something I’d kind of been dreading because I’d recently gained some weight. I’d always hated the way my doctors made me feel about the number on the scale. I’d hoped that I could lose a few pounds before my annual checkup, but weight loss had been difficult for me lately. The doctor’s appointment was awkward. She didn’t really understand how I didn’t remember the date of my last period. I explained to her that I’d been busy and my period had never been super regular, which made it difficult to track. It also tended to be lighter or late by a week or two when I was stressed. I was always surprised when I got cramps or woke up to find out it came.Diagnosis Diaries My brain couldn t help but run wild with possibilities
The doctor also spent a great deal of time asking about my weight, which also made me incredibly uncomfortable. How long had I weighed this much? Had I tried to lose it? How had I tried? Then she asked me about the zit I’d tried to cover up with makeup, making me even more uncomfortable. By the end of the visit, she too had confirmed that I wasn’t pregnant (by making me take a test at the office). So she sent me down the hall to get some bloodwork done. The results would be in soon, she said. I left without answers, ashamed about my weight, and dreading the next appointment. Finding more questions
The doctor called when the bloodwork came in. It turned out, she said, that my testosterone levels were a bit high, so she was ordering an intravaginal ultrasound. I went for the intravaginal ultrasound the following week. (My period still hadn’t come.) Many of the other people waiting in the lobby were pregnant, and it made me feel strange to be there for some other reason, though what that reason was, I didn’t know. The doctor hadn’t shared any theories of what could be wrong yet, and my brain couldn’t help but run wild with possibilities. I went back to the doctor a few days later. The ultrasound didn’t find any ovarian cysts, she said, but with the higher testosterone levels, acne, and weight gain, she was pretty sure I had PCOS. Since I didn’t have cysts, she assumed my case would be mild and that my period would return if I just “took daily walks.” I responded that I already did. We lived in New York City after all, so I walked everywhere. “Well, add an extra half hour to your walk then,” she retorted. “You just need to lose a couple of pounds.” Struggling to lose weight
I walked every morning, at lunch, and in the evening to Central Park and back. On weekends, I walked from 44th street (where I lived) to 72nd street and back, hoping I’d lose those extra pounds. After all, the doctor made it sound like I just wasn’t trying hard enough. I also altered my diet, trying to consume fewer calories in the hopes that it would help. After another month, I’d lost only half a pound and my period had still not returned. Defeated, I scheduled an appointment with my GP. Diagnosis Diaries I felt incredibly defeated and ashamed like my diagnosis was my fault because I d allowed myself to gain weight
She was much more empathetic than my gynecologist. And she was the first person to tell me that losing weight was harder for people with PCOS. She asked me if my gynecologist had mentioned a medication called metformin — a type 2 diabetes drug that’s sometimes used off-label to treat symptoms of PCOS. She told me to talk with my gynecologist about metformin, especially if I was considering having a family soon — which I was. I called my gynecologist and asked about it, but she didn’t prescribe it. Instead, she prescribed birth control pills and told me to keep trying to lose weight. “We could discuss conceiving at a later day,” she added — when I was “serious about it.” I felt incredibly defeated and ashamed like my diagnosis was my fault because I d allowed myself to gain weight My period did come back after two cycles on the pill, but I didn’t lose any weight. More in Diagnosis DiariesView AllMy Breast Cancer DiagnosisBy Ann PietrangeloMy Monkeypox DiagnosisBy Matt FordMy Psoriasis DiagnosisBy Rachael Zimlich, RN, BSN Finding the right care
A year later, my husband and I were ready to have a baby. But as soon as I went off birth control, my period stopped again. And I wasn’t getting pregnant. We’d moved out of the city by then, so I made an appointment with a new gynecologist. She took a look at my old doctor’s notes, ordered new bloodwork, and within a week, she’d prescribed metformin. She was kinder than the other doctors I had seen. She told me that it wasn’t my fault, that it was hard to lose weight with PCOS. She didn’t make me feel like I just “wasn’t trying hard enough,” like my previous doctor had. She walked me through what my diagnosis actually meant and told me that if the metformin didn’t bring my period back and help me conceive, there were other medications she could prescribe to help me have a baby. She also told me I was going to be OK — something no one had assured me of before. Fortunately, the metformin worked. I was pregnant within 2 and a half months of starting it. The metformin also got rid of some of my other PCOS side effects like the acne issues I was having. My irregular periods returned after I gave birth. It took almost a year and a half before my period came back after my son was born, and weight loss is still difficult for me. But PCOS hasn’t prevented me from becoming a mom, which was my biggest fear. Simone Marie is a journalist who writes about health, science, and parenting. Outside of work, she’s usually camping or hiking in a national park with her husband, toddler, and rescue beagle. Check out her website for more.More in Diagnosis DiariesView AllMy Breast Cancer DiagnosisBy Ann PietrangeloMy Monkeypox DiagnosisBy Matt FordMy Psoriasis DiagnosisBy Rachael Zimlich, RN, BSN Last medically reviewed on September 29, 2022 How we vetted this article
HistoryOur experts continually monitor the health and wellness space, and we update our articles when new information becomes available. Current Version Sep 29, 2022 By Simone Marie Edited By Corie Osborn Medically Reviewed By Dominique Fontaine, BSN, RN, HNB-BC, HWNC-BC Copy Edited By Stassi Myer - CE Share this article Read this next
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