And, unfortunately for these women, it often takes years or even decades to receive a diagnosis for the hormonal disorder, delaying treatment and much-needed relief. While there is no cure for PCOS, it can be effectively managed with the help of an endocrine specialist or ob-gyn. Once diagnosed, symptoms are typically treated with some combination of hormone therapy (birth control pills are one common form), diabetes medication, and diet and exercise modifications.
Why is it so difficult to diagnose? Because, apart from the symptoms of PCOS often being dismissed entirely or attributed to other issues, there's no one-size-fits-all test for diagnosing PCOS, says ob-gyn Mary Jane Minkin.
"While performing an ultrasound of the ovaries to look for small cysts, testing testosterone levels in the blood, and measuring insulin levels can help detect PCOS, many clinicians rely instead on clinical parameters," Minkin says. Think: Does the patient demonstrate classic symptoms of PCOS such as irregular periods or facial-hair growth?
So, yeah, getting to the root cause can be complicated. Here, real women share how they finally got the diagnosis they needed. Plus, how they make living with PCOS work for them:
"I REMEMBER LEAVING HIS OFFICE FEELING LIKE MY WORLD WAS CRUSHED."
"My general practitioner first told me my irregular periods might be due to PCOS when I was 18, but I thought little of it. However, years later when I was 26, I began bleeding for a month straight, which sent me straight back to the doctor. That was when she referred me to a gynaecologist for a proper diagnosis. The gynaecologist told me that yes, I have PCOS, showed me the infamous 'string of pearls' on my ovaries, asked me how old I was, and told me I better have children soon or the meds wouldn’t be able to overcome the 'disease.' He ordered me some blood work and sent me on my way.
"I remember leaving his office feeling like my world was absolutely crushed—I may never have children and why would any man want someone who was 'broken'? I wasn't being treated and was still experiencing irregular periods, unwanted hair growth, weight gain, acne, depression and anxiety, and headaches and migraines. I decided to see a new doctor and she tested my testosterone levels, vitamin D levels, and did an additional ultrasound on my ovaries. As one would assume, my levels were all over the place. But at no point did this doctor mention potential difficulties with pregnancy — it was such a relief.
"I was immediately put on the mini-pill, a progestin-only birth-control pill (oestrogen triggers migraines for me and can also cause high blood pressure, which increases the likelihood of stroke for women with PCOS). She also put me on Metformin, a medication for persons with Type 2 diabetes. While I do not have diabetes, women with PCOS are at a much higher risk of developing it, as we already experience similar issues with insulin levels.
"Getting all my symptoms under control has not been achieved yet due to my inability to stay on the right diet and exercise plan, but because of the Metformin and the birth control there is already such a difference. " — Marci, 34
"IT EXPLAINED ALL THE SYMPTOMS I'D BEEN EXPERIENCING FOR YEARS."
"I was diagnosed with PCOS by my dermatologist. Post-university, I started developing acne for the first time. I thought maybe that being an 'adult' or in a new city was just causing me stress. But as time went on, it wasn't improving, so I decided to go to the dermatologist—she took one look at me and said 'Oh, you probably have PCOS.' I was slightly confused as she explained what PCOS is, but she said that she could give me some topical creams and encouraged me to see an endocrinologist for a proper diagnosis.
"I then frantically looked up PCOS, reading that the main symptoms were 'menstrual irregularity, excess hair growth, acne, and obesity' and that it was 'the leading cause of infertility in the United States.' My mind immediately jumped to if I would be able to have kids and how this might affect future relationships. When I called my mum, I think she was even more upset then me — that was the hardest part.
"I went to my endocrinologist and she was wonderful! She explained all the science to me, told me that this is a common condition and that I would have to go back on birth control to help my symptoms and therefore minimise my risk of infertility in the future.
"As I found out more about PCOS, things really began to fall into place. It provided a great explanation for what my body had been experiencing for years: why I have never been someone who can drop five kilograms easily, why I needed to have laser-hair removal, and why I had such intense sugar cravings. For me, the cutting back on sugar has been the hardest part — I mean, ice cream is amazing.
"Honestly, I feel lucky that I know now that pregnancy might be something that's difficult for me because I can be proactive about it and I have been able to manoeuvre that conversation in relationships. I have made sure that I keep a consistent weight and am still hoping the acne goes away. As with any major lifestyle change, I take each good day as a good day and if today I wasn’t the best about sugar or whatever, tomorrow I’ll try to be better." — Anonymous, 24
"NOW, I AM EMBRACING MY SYNDROME."
"I first realised something was off earlier this year when I began gaining weight despite my consistently healthy lifestyle. No matter how hard I worked, the weight wouldn’t come off. My period became extremely irregular and would go missing for months on end. During sex with my boyfriend I would bleed heavily for no reason and this would be something that occurred on multiple occasions. I became worried because that was just not normal at all. After putting it off for almost a year, thinking the problem would resolve itself, I finally made an appointment to see my ob-gyn. My doctor didn’t say much when I told her my symptoms and what was happening to me, but I trusted that she would get to the bottom of it. She did a pelvic sonogram for me and within a week called me saying I needed to come into the office as soon as possible to talk. During that visit, she broke the news to me that I had polycystic ovary syndrome.
"My doctor explained to me what PCOS is and that it isn’t curable, but treatable. I learned that it could effect my menstrual cycle, weight, that I could possibly gain hair in unwanted places like my face. What scared me the most was that it could affect my fertility in the future. We discussed treatment options and she offered me birth control as one type of treatment and then Provera [a hormonal supplement] with Metformin [an anti-diabetic medication] as my second option. I rejected the birth control offer because I never liked the way BC made me feel. The Provera helps stimulate my menstrual cycle and prevent uterine lining overgrowth, while the Metformin helps prevent diabetes, since PCOS often gives women elevated insulin levels. I took Provera for only two months, as recommended by my doctor, since it’s not something you take continuously, and I have continued to take the Metformin as recommended by my doctor, and this has been successful. My period has finally returned and I have not had any abnormal bleeding. My weight is still fluctuating, but since being diagnosed with PCOS, I’ve learned what foods to avoid and what foods I should eat more of—less starchy foods, less high-sugar drinks and foods, and more wholesome, natural, nutrient-dense foods. So, in all, it has made me cater to my diet more attentively. Luckily, this hasn’t interfered with my daily workouts.
"I remember how afraid I felt when I was first diagnosed and now I am embracing my syndrome. I am a strong woman who is fighting against this incurable syndrome and I believe every woman diagnosed with PCOS can be just as strong and do the same." — Alysha, 20
"IT MADE A WORLD OF DIFFERENCE TO BE PROPERLY DIAGNOSED."
"I’ve had PCOS symptoms since I first started my menstrual cycle at around age 11 or 12. I was always told that my first menstrual cycle would be light and minimal but it was extremely heavy — that was the start of my irregular periods. I also developed chronic acne around that time. A couple of years later, I began to notice that I had gained about five kilograms pretty quickly. Up until that point, I was very thin, and all the weight was piling on in my midsection. However, I was active in high school so the weight came off relatively easily once I adjusted my eating habits.
"Once I graduated high school and became less active, I began to notice that the scale was moving up again. However, this time it was much quicker and was 10 times harder to lose. I also began having daily migraines, leg cramps, adult acne, and thinning hair. Not long after the weight gain, my menstrual cycle completely stopped. That’s when I began to do research online. The first condition that came up in my Google search was PCOS. I had never heard of it before, but I had many of the symptoms described. After reading that, I intentionally located an ob-gyn who specialises in PCOS. She went down a checklist of symptoms and asked me to answer each question with either yes or no. I answered yes to almost every symptom including oily skin and acanthosis nigricans, a type of patchy skin discolouration. She asked if I had ever heard of PCOS and gave me an information packet. Then, she scheduled an ultrasound to check for ovarian cysts, which I did have. I also had blood work done to check my testosterone and vitamin D levels — it turned out that my testosterone levels were elevated and I had a severe vitamin D deficiency. She confirmed that I had PCOS.
"It made a world of a difference to be properly diagnosed. With individualised treatment like Metformin and birth control prescriptions for the condition, I stopped having migraines, my carb cravings were gone, my skin cleared up, and I finally began to lose weight and have a regular menstrual cycle. My doctor also recommended a low-glycemic, low-carb diet with 45 minutes to an hour of high-intensity exercise several times a week. I also take vitamin D, fish oil, and magnesium supplements every day. Many women are living with these symptoms because they have not been properly diagnosed with PCOS. I was really lucky to have found an ob-gyn who understood my condition and helped me figure out how to control the symptoms." —Chelsea, 29
"I WISH I HAD A PROPER DIAGNOSIS IN MY TEENS."
"I wasn’t diagnosed with PCOS until I was struggling to get pregnant with my second child, at 26. But looking back, and being educated now, I had all the symptoms starting as early as age 13 — difficulty losing weight, high blood sugar and cholesterol, irregular or absent periods, painful cycles, and cramps.
"Even upon that diagnosis, I wasn’t given much help from my healthcare provider. Essentially, they told me they’d help me get pregnant, and after that I should 'just lose weight.' That was it—no resources for support, education on nutrition, or lifestyle changes to aid in the vicious cycle of struggling to lose weight and being told all my issues would be resolved once I did. Weight loss with PCOS is different than without, so I had to do my own research and a lot of trial and error in order to figure out what diet changes actually helped ease my symptoms.
"I wish I had a proper diagnosis, as I should have, in my teens. It would have given me the opportunity to change my lifestyle and treat these specific symptoms earlier on. Now, it feels like I have to work that much harder to undo the damage of not knowing for so many years." — Shelby, 28
This article originally appeared on Women's Health US