Among the many frustrating features of polycystic ovary syndrome, a hormone imbalance that can cause irregular periods and fertility issues, is the fact that we may never have a definitive answer for what causes it. Earlier this month, a team of researchers floated that it has to do with exposure to certain hormones in the womb, but that’s likely too simple an explanation for a condition with so different ways of making itself known.
What we do know, though, is that PCOS is incredibly common. In the U.S., an estimated 10 percent of women of childbearing age have the condition, which is often — but not always — characterized by some combination of ovarian cysts, acne and hair growth, and problems regulating weight and blood sugar (symptoms can vary widely from person to person). The Cut talked to seven women who have PCOS about how they were diagnosed, how they deal with their symptoms, and whether PCOS has affected their ability to have kids.
Bex, 24, makeup artist, Miami
My sister was diagnosed before me, and the doctor told her that it could be hereditary, and if she had any sisters to let them know so they could get checked out. So I got a blood test to test my hormone levels, and it came back that my androgen levels were higher than normal for women. I also had irregular menstrual cycles, so I was diagnosed with PCOS. They prescribed me birth control to help control my androgen levels, but other than that they just told me to work on losing weight, which is kind of a generic thing.
Birth control obviously helped regulate things, but I still had pretty painful periods, and I still had hormonal cystic acne that would show up when my periods would come. I just recently had hormonal cystic acne show up on my chin. It’s really frustrating, especially when you run a beauty advice page or a makeup advice Instagram and you have these two cysts on your chin. And I’m more hairy than a normal woman is. It’s kind of embarrassing, because a lot of people see it as not normal, even though in my body it is normal because these are my hormone levels. That’s something I was always insecure about growing up.
Along with that, I have darker skin patches on the folds of my body — under my arms, between my legs, around my neck. That’s another symptom of PCOS that’s been a struggle for me, because summertime comes around and everyone looks cute in tank tops, but then you don’t feel comfortable enough to wear them. You have these symptoms and you don’t know what they are or how to get rid of them. I’m aware now of what it is, but I still struggle with being confident enough to show my skin.
Amy, 42, sales account manager, Indiana
When I was about 22, I had severe pain in my lower left abdomen, so I went to my doctor and they did an emergency ultrasound. They discovered that I had a cyst on my left ovary about the size of an orange — it wasn’t one big cyst, it was a collection of smaller cysts, and it was difficult to remove surgically because of that. So they just put me on a different type of birth control, and eventually it went away on its own. But as a result of the repeated rupturing of the cyst, I had a lot of pretty bad scar tissue. At one point, my ovary adhered to my colon, and my doctor had to surgically cut it free.
Surprisingly, I didn’t have trouble getting pregnant. We didn’t really try for very long. I was on the pill for so long, and when I was about 37, we said, we better go ahead and do this, and I was pregnant pretty quickly. My right ovary had some issues with it, too — I would have some cysts on and off — so we were worried that I would potentially not be able to get pregnant, but I did.
When I went off the pill, I did have very irregular periods. And after my child was born, I began to have more problems with irregularity and pain. I ended up having to have my ovary removed. I have another medical condition where they suggest not having any more children, so I thought, oh, heck, let’s just get this taken out. We did an ablasion on my uterus and removed the left ovary, and I felt much better for a long time. But I’m currently dealing with what we suspect to be more adhesions on that side. We thought at first it might be something with my kidney or my bowels, but now we’re thinking it might be more scar tissue.
Alana, 28, writer, New York
To be totally honest, I’m not positive that I have PCOS — that was the tentative verdict from my doctor, but she wasn’t positive, either. I went off birth control a few years ago and my period just didn’t come back. I was still in my early 20s at that point, but I had kind of a preemptive freak-out that this meant I was infertile, so I went to see a reproductive endocrinologist. It turned out I had cysts on my ovaries, but I didn’t really have any other symptoms. She explained that PCOS was kind of a catch-all diagnosis when there was no other explanation, and because they couldn’t figure out another reason why my period had disappeared, we just went with it.
I’m back on birth control now and my period comes regularly. I’m still several years away from having kids, but I’m a worrier, so I still worry sometimes about whether I’ll be able to get pregnant. I’ve given my partner a pep talk — you know, this may be hard for us, just so you’re aware — and he’s great and understanding and everything, but I also suspect he thinks I’m being a tiny bit overdramatic. I probably am, but I can’t help thinking about it.
Ashley, 31, actress, Ohio
How I found out was, I’ve been overweight my entire life, and I decided I needed a change. I’m a recording artist and actress, and in those industries they want to see your looks more than your talent a lot of the time, so I needed to do it for that but also mostly to be healthy. So I started working out and was on a very strict diet, and I lost 46 pounds between 2010 and 2012. And then I plateaued, and all of a sudden, within a couple months in 2013, I gained 60 pounds, even though I was still on that same regimen. I also had hair loss, and I was growing facial hair, but it wasn’t until I had gained all that weight that I knew something was wrong.
I had a friend who had the same problems, and she had told me about PCOS. I had no idea what PCOS even was until I saw her posting on Facebook. She was like, go to this endocrinologist, and that’s how the ball got rolling. They did blood work and found out that my hormones were unbalanced, and that I had too much testosterone. They started me on the birth-control pill and hormones to help get things regulated, and put me on metformin for insulin resistance.
It took maybe a half a year for me to really start noticing a significant difference. The facial hair still is there — I have to shave my chin daily — but it’s slowed as far as the growth. And my hair is just now starting to grow back. When I’m on set as an actress and I go to hair and makeup, I’m embarrassed because they’re trying to fix my hair, and they’re like, Oh, so you have some alopecia going on. And it’s like, well, kind of.
Kim, 38, nurse, Seattle
I was diagnosed 11 years ago. I had one child at that point, and we were trying to get pregnant with a second child. I was having trouble because my periods had gone from being very regular to very irregular. I also had had some significant weight gain that went unexplained. So I went in to see my OB/GYN and saw a physician’s assistant in her office, and she started to put together some of the symptoms I was reporting, and asked me about other symptoms that I hadn’t reported because I didn’t think they were important.
Strangely enough, after I received the diagnosis and continued to have trouble getting pregnant, I ended up going to another specialist, and it turned out I was already pregnant. I just sort of got lucky and ended up being able to get pregnant, but that was the luck of the draw because my periods were extremely irregular at that point.
One of the other biggest issues for people [with PCOS], aside for not being able to get pregnant, is the weight. I was someone who was an athlete, and I ate right and did all the things you’re supposed to do, and yet I was gaining all this weight. I was almost 300 pounds and I was pre-diabetic, and my health was just terrible. I hit a point where nothing else was working, so I ended up having gastric sleeve surgery in order to lose weight. I lost over 100 pounds and so many of my risk factors went away I’m no longer pre-diabetic and I don’t have any heart issues. I still have some issues related to PCOS, like abnormal hair growth, but that’s more of an irritation that anything.
I would give this piece of advice to women: The traditional signs and symptoms of PCOS don’t usually make sense together, and they’re not the kinds of things you would generally approach a doctor about, but do not hesitate to mention them to your gynecologist because they may be indicative of a bigger problem going on.
Monique, 31, fitness coach, Tennessee
After my freshman year of college, I wasn’t having regular cycles. I didn’t think it was a big deal, but my mom was like, you should be having your cycles every month, you need to go to the doctor. Once you’re diagnosed, you start researching and reading, and pretty much all of the symptoms, I had — hair growth, facial hair, blood sugar issues. They put me on birth control, which I was on for five or six years, and it pretty much masked all the symptoms. I also, during that time, lost a significant amount of weight, which is something a lot of people do to try to minimize their symptoms.
I just made the decision to get off birth control. I’m not on any medication now. I have a little notebook that I’ve kept for years and years, and every morning I write down what day I am in my cycle. A lot of it is looking at trends of what’s going on with your cycle and your blood sugar, so I keep track of all that. I monitor it naturally and through the nutrition that follow, I feel like I’ve significantly improved. And the facial hair, I’m on top of it. Every week, week and a half, I just go get it waxed. I know that’s just part of the deal. I run a PCOS support group and I know several girls who are in it do laser. I haven’t done that yet — I just stick with waxing — but in the future I may, just for the convenience of it.
Honestly, I’m really not concerned about fertility. The hard part for some people [with PCOS] in getting pregnant is that they don’t ovulate, but I’m ovulating. My husband and I are adoptive foster parents — we chose to adopt, but if we do choose to try to get pregnant, I don’t have any worries about that. We haven’t closed the door. I’m still young enough where if we want to have children, we can, because I have a good handle on it.
Ella, 27, producer, Los Angeles
My entire life, I’ve always had irregular periods and extreme pain. I’ve fainted from cramps, I’ve vomited from cramps. It’s really horrible and traumatic. But I’ve been on and off birth control and haven’t been able to figure out something that works for me. I’ve always had a hard time staying on birth control because it really affected my mental health. Doctors would always just try to revert to doing a different type of birth control, so I’ve been on quite a few.
Recently, in the last couple years, I’ve been trying to figure out if there’s something more serious going on. I talked to my gynecologist about it, and it was a very long process, but eventually they decided I should go see a specialist regarding PCOS. I’m still in the process right now of trying to figure out the best treatment for me. I don’t want to go on birth control because I’ve had such a negative experience in the past. They’ve recommended a few different things — the IUD, and just taking some specific hormones — so there are a few options that I’m trying to explore right now.
I’m happy that I know what’s going on and that I can get on top of this now. My whole life, doctors haven’t really been eager to jump down this path, and so I’m happy that now I have a woman gynecologist and a specialist who’s experienced with this. It feels better to know that people know what they’re talking about, and aren’t just like, here, try a different birth control.