Getting diagnosed with PCOS: personal experiences and advice
We asked people with PCOS to share their stories.
“Most doctors aren’t knowledgeable about PCOS”
Since I got my period in 7th grade, I’ve had weight fluctuation, hair in places it shouldn’t, irregular periods, sugar sensitivity, and sweat. I got diagnosed with PCOS in my junior year of high school—it took about 4 years to take action on my symptoms. In my experience, doctors are helpful but most still aren’t fully knowledgeable about PCOS. The doctor who diagnosed me helped me greatly, especially with the dietary aspect of it. For people who think they might have PCOS I’d say definitely get diagnosed. That way you can for sure know and do things that will help it to be better. Just going off your symptoms is not always clear.
“Once I consulted an OB-GYN, I was diagnosed in about a month”
I've had PCOS symptoms for four years: very irregular, long and heavy periods, pelvic pain all the time, and some acne and hirsutism but they are very mild. It took me a while to actually go see an OB-GYN after I started having pain, but once I consulted with an OB-GYN I was diagnosed in about a month.
—Anonymous, Female, Buenos Aires, Argentina, 21
“If you think you might have PCOS: speak up”
I was diagnosed in 2015. One of my main concerns was always having an irregular period but the doctors would always say “Don’t worry, it’ll straighten out once you’re older.” It never did so I finally was like, “I need to see a specialist.”
My experience with doctors wasn’t terrible, but I wish they had listened the first time so I wouldn’t have had to deal with it for so long. When I actually demanded more testing is when they finally helped me. If you think you might have PCOS: speak up, there’s an answer. You can get help, get more testing done.
“I felt like I was dismissed because of my size”
For 15 years I’ve had excess hair growth, weight gain and difficulty losing weight, irregular periods, acne and hair loss. It took years for me to get a diagnosis. I was told it was likely I had it but was always told to lose weight rather than tested for a definitive diagnosis. It wasn't until I had trouble conceiving that I finally got tested and had the diagnosis confirmed.
The first 4 doctors I spoke to just focused on my weight without helping to explore what was causing my symptoms. I felt like I was dismissed because of my size and it stopped me getting treatment earlier, which is making fertility treatment now harder due to my age. As PCOS is so common, doctors should investigate it more as a cause for weight gain rather than blaming weight gain for all the symptoms. I also wasn't given much information until I saw a specialist.
My advice? Keep pushing for a diagnosis. Sometimes test results aren't definitive but you know if something isn't right. If you don't get help and advice, exercise your right to see a different doctor until you get the help you deserve. Don't let them blame it on your weight or make you feel like losing weight will solve everything—it isn't a magic fix.
“In India, PCOS is seen as a ‘lifestyle disease’”
I had a bit of facial hair growth and hair loss for a few years. That coupled with me being overweight was what lead my gynecologist to recommend an ultrasound. In India, PCOS is quite commonly heard of in urban settings. They refer to it as a “lifestyle disease/syndrome.” Most of my friends have been diagnosed with it, and although most also started taking birth control to regulate their cycles, for me, the most common thing that doctors said was that I need to lose weight. I didn't end up doing anything about it and when I went for an ultrasound about a year later, the cysts had vanished.
Speaking from my context, the urge to solve PCOS really comes from the Indian society's fear of making conception difficult in the future and has little to do with other symptoms. It has felt more like a catch-all phrase to me in my experience where if one has irregular periods or hair fall or acne or really any other condition, the response is often "It must be PCOS" which makes me think we know so little about it.
—Anonymous, New Delhi, India
“Find a doctor who will listen”
I’ve had PCOS symptoms since I was 13ish—mild cysts, and extremely painful and irregular periods. It took years for me to get a diagnosis. Doctors ignored me when I told them how bad the pain was. My cycle was super irregular, but my doctor put it on me being young. It wasn’t until I was a junior in college that the campus GYN told me I had textbook PCOS and wondered why no one had diagnosed me. Before that no one listened to me. I was 13 and telling them I was in pain, but they told me I was exaggerating. My advice would be, don’t let a doctor tell you no. If you know something is wrong, find a doctor who will listen.
—Anonymous, cis female, California, USA, 24
“I didn’t realize my symptoms weren’t normal”
I didn’t realize my symptoms (ovulation pain and painful period) weren’t normal until after I was diagnosed. I was lucky in that I was diagnosed quickly, but would have prefered my doctor sit and discuss the diagnosis with me. He sort of sprung it on me and changed the subject as I was there for a fertility appointment.
“Get a blood test for hormones”
I’ve had PCOS symptoms most of my menstruating life, so almost 10 years now. I have more than 20 cysts on each ovary, irregular periods, and I experience a lot of period pain and abdominal pain. I have a bit more hair than I should, and had terrible acne (before it got treated with Roaccutane).
After four years of extreme period pain and going to doctors for it, I finally went to a specialist as I couldn’t deal anymore. The GPs made me do an internal ultrasound that showed nothing abnormal, but when I went to the specialist she organised an ultrasound conducted at a place specifically for women. There they found all the cysts, and confirmed I have moderate to severe PCOS. I also underwent a laparoscopy to check for endometriosis, which was inconclusive.
For anyone wondering if they have PCOS: Push and get a second opinion! Get a blood test to test for hormones (AMH) and get an ultrasound done.
—Anonymous, female, Sydney, Australia, 25
“My doctors were fast and thorough”
I’ve had very long period cycles (90 days) for 2 years, and was diagnosed three months after noticing symptoms. I have no complaints with my doctors, they were fast and thorough. Everything was well explained to me and they listened to my wishes. If you feel you might have PCOS make an appointment with your doctor and then don't back off until they either give you a diagnosis or assure you that you don't have it. If you do have it, ask them to explain to you what's going on in your body because then you will understand it better and will know how to deal with it. Then discuss with your doctor what are the best options for the treatment.
—Dea, female, 23
“Find people who will support you”
I’ve had all the classic PCOS symptoms for five years, and it took three years for me to get a diagnosis. I’ve seen two different doctors for it, one who was not knowledgeable in it and didn’t offer me any support and one who was aware of the condition who offered me plenty of support.
My advice? Be persistent don’t stop until someone listens. PCOS can be harrowing at times. Find people who will support you through it.
“I have so little information”
I have been diagnosed with PCOS, but I do not have symptoms. Aside from the fact one doctor diagnosed me with PCOS, no one really did more exams (perhaps because I have no obvious symptoms as androgyneity, abundant hairiness or obesity). No one really told me what PCOS implies for my fertility or potential for painful ovulation. I actually have so little information about it, but [my having PCOS] does not seem to worry my gynecologists.
—Anonymous, female, France, 27
“Ask questions until you find a doctor willing to answer”
I started to notice irregularities in my cycle when I was 15, three years before was diagnosed by a new OB/GYN. My symptoms are an increased level of testosterone, and irregular periods. For people who think they might have PCOS: Do your own research and ask questions until you find a doctor willing to answer. I got lucky, as my doctor took initiative and didn't hesitate to take further tests to affirm PCOS when I presented with symptoms. She was my advocate in that sense, and I wish more doctors would be that for their patients.
—Lisa, Las Vegas, USA, 25
“Get to the root cause”
I’ve had symptoms for about one year: high androgens, insulin resistance, and irregular periods.
I was diagnosed with PCOS after blood work confirmed my high androgens and HOMA-IR value, and thanks to tracking my cycle. To anyone who has PCOS symptoms but doesn’t have a diagnosis yet: Be your own health advocate. Seek the care of an expert. Get a second opinion if you feel like you are not being heard, or your experience is not being validated. Know that non-pharmaceutical options exist for the treatment of the root and symptoms of PCOS, but it's important to get to the root cause (ie. testing hormone levels) to ensure that you are getting the best treatment you can.
“Keep a diary of your symptoms”
I’ve had PCOS symptoms for around 6-7 years: a 30+ days cycle, severe breast pain, and severe painful hormonal acne. Two years ago the acne was the last straw: it made even washing my face painful. Within 6 months of first noticing symptoms I was diagnosed with mild PCOS by a male gynecologist. He dismissed it as being not very serious and recommended weight loss. For other people who have PCOS symptoms but don’t have a diagnosis yet, my advice is to do some research. Keep a diary or app updated with symptoms.
“Trust your own instincts”
I first started noticing that things weren't right at the age of 13 or 14. The main symptom for me was the irregular periods, as well as hair loss, acne, pelvic pain (especially when/if I ovulate), fatigue and easy weight gain. It took 4 years from the initial doctors appointment for me to get an “official” PCOS diagnosis. My advice for anyone who has not yet got a diagnosis: trust your own instincts. If you think there is something not quite right—push for answers, don't let people tell you “it’s your age, it's normal.”
—Abi, female, UK, 21
“Visit a gynecologist as soon as you can”
I’ve had PCOS symptoms for as long as I can remember, including excruciating pain during my period, not just in my uterus, but in my back and legs as well. I am more prone to gaining weight, and my hair started falling out recently, so I am now going bald. It took a long time for me to get a diagnosis, because I was very scared of going to see a gynecologist. But the first time I was there, she diagnosed it straight away. If you think you might have PCOS, try and get help. Go visit a gynecologist as soon as you can.
—M, 24, Ljubljana, Slovenia
“Trust your body, track your body”
I am infertile, and my other symptoms include hirsutism, weight gain (until weight loss surgery), and very heavy periods—I have to have iron infusions every other month because of them. I was diagnosed at 16. After taking the pill caused me to bleed for 6 months solid, my GP realised there was something wrong with me hormonally and sent me to get tested. My advice for people who think they might have PCOS? Keep nagging your GP, trust your body, track your body.
Download Clue to track your cycle and your symptoms.