Life
Polycystic ovary syndrome, or PCOS, affects 10% of all women, according to the Office on Women's Health — but for women who have it, the journey to PCOS diagnosis can be a long and sometimes aggravating one. A worldwide study published in 2019 found that it took an average of two years and three doctors for people to be given a PCOS diagnosis, and for some the timeline was much, much longer. Nine women told Bustle that their experiences with PCOS diagnosis ranged from accidental discovery to long, painstaking battles for information — and that often, their medical professionals wouldn't give them the support they needed.
Part of the reason for PCOS' diagnosis delay, say experts, is that it has many different symptoms that can be missed. PCOS is "the most common cause of abnormal cycles" in people with ovaries, Dr. James Stelling, reproductive endocrinologist at Island Fertility at Stony Brook Medicine, tells Bustle. "Patients also tend to have elevated male hormone levels causing extra acne or abnormal hair growth." Another element, however, is that studies indicate medical professionals can ignore or downplay women's reports of pain, a problem known as pain bias that can cause delays in treatment.
These problems with diagnosing PCOS reveal how crucial it is for medical professionals to be better informed about the syndrome, but also how difficult it can be to be your own health advocate — particularly when doctors aren't listening.
Katie, 36
"I was diagnosed when I was 29 because the National Health Service told me to go on the mini pill (progesterone only) because I also get migraines. I've been on the combination pill since I was 16, so I hadn't had long periods where I've not been on hormonal birth control. So I never really had a regular period before going on the pill.
"When I went on the mini pill, all my symptoms came out. Bacne, real bad (and my face was a touch more spotty as well), inside libido increase (to the point where it was really distracting), and my hair started thinning. It was #3, the hair, that got me back to see my GP, as it was getting really thin on the sides, almost like male patterned balding.
"My GP (a lovely middle aged woman) took my hair concerns seriously. I had various other blood tests (cortisol levels, etc). When those were negative she eventually had me to get an ultrasound of my ovaries. I had 'textbook' cysts that looked like pearls.
"One of the reasons it was perhaps missed at first was because I'm not terribly hairy, which is one of the main PCOS symptoms. But it turns out this is not the case in East Asians."
Keisha, 32
"I was diagnosed while trying to diagnose my gut stuff. My very thorough gastroenterologist sent me for a pelvis X-ray because guts and reproductive organs are very close together, so he wanted to confirm it was actually gut stuff. They found cysts, but also, through other tests, found ulcerative colitis. So accidental diagnosis."
Kara, 21
"I started exhibiting signs of PCOS when I was going into sixth grade, and my mom spotted a few hairs sprouting from my neck when we were in the bathroom getting ready for the day. It started by her plucking them when they popped up, but eventually grew into a full-blown neckbeard (which I still have to this day).
"It wasn't officially diagnosed until my freshman year of college, when I went to the doctors after experiencing deafening pain while doing sit-ups at the gym, and I couldn't bend at the hips for a week after without wanting to cry. It turns out that I had a grapefruit-sized dermoid cyst in my left ovary that had caused my fallopian tube to contort under the weight.
"During the test process and all of the scans, I was told that I didn't have PCOS. It was a pretty exciting month up until the surgery that removed the dermoid cyst. I thought that the big one was causing all of the side effects of PCOS and once removed, I would live 'normally.' However, when I woke up, I was told that my other ovary was full of cysts."
Namryta, 37
"I got hitched in January 2018. After several failed attempts to get pregnant and seven months of negative results, my mother, a retired gynecologist, suggested taking tests to rule out any medical problems.
"I was tested for blocked fallopian tubes and fibroids. This involved several tests, which included HSG (hysterosalpingograms), MRIs, blood sampling, and ultrasounds. The tests were painful and uncomfortable, but I wanted a baby and I was ready to undergo every possible test to find out what was wrong. The results finally came out and it was found that nothing was wrong. No blocked fallopian tubes or fibroids that could hinder conception. My mother was baffled and we sought a second opinion.
"At the next hospital, I had to undergo 19 tests. The entire process was mentally traumatizing and tiring. When the results came out, I was told that I suffered from PCOS, small fibroids on the outside of the uterus, and fatty liver, which all deterred me from getting pregnant.
"The surgeon then next suggested a laparoscopy to remove the fibroids while also prescribing medications to reduce PCOS. Two weeks later, I was in the operation theatre getting the fibroids removed. It took me another two weeks to recover. But my PCOS was still there. I tried reducing weight in the coming months but always fell ill trying to do so.
"Living with PCOS is painful and stressful. I'm keeping my fingers crossed because I know that I am doing everything possible to make a pregnancy happen."
Lisa, 33
"At the time, I was 29 years old. I was having some symptoms that lead my primary care doctor to believe I had lupus so she sent me to a rheumatologist. It was during that visit that I heard the term PCOS for the first time. At 29, I had never even heard of it. The rheumatologist talked to me about other symptoms he noticed in my chart: excess weight gain, excess hair on my face, abnormal hormone levels, and so on.
"At the end of the appointment, the rheumatologist gave me some resources to do research on PCOS and for the first time everything made sense. Since I was a teenager I experienced extremely painful periods, uncontrollable weight gain and grew hair on my face. I always felt uncomfortable and out of place because of it."
Kristin, 35
"I was diagnosed in my early 20s. I had always had an irregular cycle, and never thought anything of it. But over time, it gradually got worse. It started with my periods lasting for 2 weeks at a time. Then they came more frequent. It got to the point where I would only have a week in between periods. My mom and I became concerned because she had developed anemia because of her cycles, so we decided to go see the gynecologist.
"After listening to everything that was happening, my gynecologist wanted to see if I had PCOS. So he sent me in for a pelvic ultrasound which confirmed it. It was a little bit of a difficult diagnosis since I was so young.
"We talked about the possibility of infertility (which, as a 20 year old, is really rough), we went over medications and lifestyle changes that could help it. The next couple of years were spent trying to narrow down which medications helped and which ones just made me feel worse. Keep in mind, this was 15-ish years ago, when not a whole lot was known about PCOS or how to treat it."
Fiona, 25
"I was a full scholarship track athlete at Notre Dame and after I stopped taking birth control my sophomore year of college, I gained a significant amount of weight over a short period of time. My coaches blamed my diet and made me go to a nutritionist. I also wasn’t getting my period regularly (sometimes between 45-50 days) and my hair began thinning.
"My track career suffered immensely as I was never able to lose the weight and ended up getting injured my senior year. After college I went to a new gynecologist looking to get back on the pill, and she let me know I had PCOS and showed me the cysts in an ultrasound. Since then, I have been taking medication and have lost a lot of weight but I am still not back to the body I feel most comfortable in."
Miranda, 25
"I sought out a diagnosis when I was 21. My husband and I started trying to have a baby in October of 2015. I missed my first period early November 2015 but was not pregnant.
"It took me three months to get a diagnosis and it was only because I pushed very hard. When I first missed my period and I wasn't pregnant I called my gynecologist. The nurse that answered said that it was normal because I'd been on birth control and to call back in a month if I had not gotten a period.
"In mid-January, my gynecologist gave me a normal exam and told me that I probably either had a large cyst or PCOS. She then had my blood drawn to check for levels of testosterone and a few other things, and she had me go do a vaginal ultrasound the next day. The day after my ultrasound I got a call: I officially had PCOS.
"My doctor never really explained to me what PCOS was. The day I had my exam with her, she told me that PCOS wouldn't affect me at all; I would not have problems having children. In fact when I asked her about trying to have a baby, she told me I was too young to have kids and not to worry about it right now. That's all I got: no helping me with the symptoms or anything fertility-wise.
"Over three and a half years later I'm still struggling with infertility and still have not had a baby or gotten pregnant."
Sarah, 33
"One month my period didn’t really happen, but I was spotting for the entire month. I went to see an OB/GYN about the issue to make sure everything was okay. She ordered a transvaginal ultrasound and blood work to check my hormone levels.
"When we got the results back she told me, 'Everything is fine, you just have a few cysts on your ovaries.' This didn’t sound fine to me, so I sought out a second opinion. I took the results to a new OBGYN and explained the situation. She looked at my results, both blood work and ultrasound, looked up at me and said, 'Everything is not fine. Your estrogen levels are seven times higher than they’re supposed to be, and with the multiple cysts on both ovaries? You have PCOS.'"
"She spent some time talking to me about what this meant and to be honest, I was so relieved to learn that my lack of progress with weight loss wasn’t my fault, that it didn’t even register that I might struggle to have children later down the road. I was about 23 at the time of my diagnosis. It all happened within about a month."
