From cyster to cyster: 3 women talk about living with PCOS
LAST UPDATED: Sep 25, 2018
8 MIN READ
Polycystic ovary syndrome (PCOS) is one of the most common endocrine disorders affecting women of reproductive age. According to NCBI (National Institute for Biotechnology Information, part of the National Institutes of Health), it’s also the most common cause of infertility, since some people with PCOS don’t experience ovulation (a necessary ingredient in conception). It’s estimated now that about 1 in 10 women have PCOS, and there’s a whole month dedicated to PCOS awareness. And you guessed it: it’s September. At Modern Fertility, we’re taking the opportunity to demystify PCOS, offer support, and connect people with resources that’ll make a difference.
If you need a quick refresher before we dive in: According to Mayo Clinic, the three main features of PCOS are: cysts in the ovaries, irregular or missed periods, and high levels of male hormones (you need at least two of the three to diagnose the syndrome). PCOS is a “syndrome,” or group of symptoms, and each person with PCOS can experience a different combination.
Some people with PCOS have created a community around the syndrome, sharing their experiences and supporting each other. They call themselves “cysters” (amazing). Cysters often find each other online, through websites like Soul Cysters, in Facebook groups, awareness raising organizations, and meet up groups.
We believe there’s no better way to understand a syndrome than to hear about it firsthand. So, we sat down with three cysters to learn all about their journeys–from symptoms to remedies, stigma, family planning, and more.
Modern Fertility: Let’s start at the beginning–can you tell us about being diagnosed with PCOS?
Emilia: Sure. I guess the first sign was that I never had regular menstrual periods. When they started they were every 3 months or so. When I wasn’t sexually active I shrugged it off. When I started having sex with my boyfriend in college, we used condoms. I remember waking up in the middle of the night once thinking “wait a minute…I’ve been having sex and haven’t gotten my period in a while.” I took a pregnancy test in the bathroom and had a panic attack. I didn’t understand what was happening (I didn’t know what a panic attack was at the time–it can feel like you’re dying!), so I went to the hospital. When I mentioned having my period every 3 months, they actually suggested it might be PCOS. That was the first time I mentioned it to a doctor.
MF: What PCOS symptoms were you experiencing?
Emilia: When I had an internal ultrasound, they saw that I had the “string of pearls”. I also had excess hair growth, and gained about 30 pounds when I went to college. There was this whole confluence of depression, weight gain, hair growth in weird places, and very irregular periods. It was a lot to deal with as a freshman in college.
MF: After being diagnosed, what helped you keep your PCOS symptoms in check?
Emilia: I ended up on hormonal birth control for years and years. That seemed to decrease my symptoms. Now after giving birth, I’m on a hormonal IUD.
As for lifestyle changes, I remember being sent to a nutritionist after first being diagnosed and absolutely hating it. She was saying things like, “put stevia in your pie!” and “here are the exact things you’re allowed to eat.” It felt so regimented and prescriptive, which didn’t feel right for me. I eventually realized the best way of being in charge of what I ate was just paying attention to how I felt when I ate certain things. Like, “oh, this doesn’t agree with me,” instead of, “I’m not allowed to eat this.”
MF: As a new mom, can you talk a bit about how PCOS affected your family planning process?
Emilia: My biggest anxieties with PCOS were around whether I would be able to have kids when I wanted. I saw a doctor who said that once I stopped taking hormonal birth control, it was possible I’d start ovulating again on my own. About 8 months after I stopped taking it, I was still bleeding pretty irregularly, so I went to see a doctor about my ovulation. It was then that I found out I wasn’t actually ovulating at all – I was just having withdrawal bleeding. I ended up going on medication to induce ovulation, and it was with that medication that I became pregnant just a few cycles later.
MF: Can you talk a little bit about your experience with openly sharing your PCOS diagnosis?
Emilia: I feel like PCOS is easy to stigmatize because a lot of the symptoms are kind of unsavory by Western beauty standards and it has to do with your reproductive system. But it’s really important to talk about – I mean so many people have it. Personally, I probably talk about it more now because of my recent pregnancy. And as I’ve gotten older I’ve met more and more people who have PCOS. I’ll mention it to a friend of mine and they’ll be like “oh I have it too!” I’ve started to feel like all my female friends have it. And it’s been really interesting because everyone who has it seems to have a completely different set of symptoms. It’s a syndrome not a disease, so everyone has specific symptoms that make up their particular flavor of PCOS. Talking to friends about their struggles and journeys has been so helpful. Just like mental health issues, it makes things feel less weird if you just talk about them out in the open.
MF: So, September is PCOS awareness month. Do you feel like most people know what PCOS is?
Emilia: Ten years ago I’d never heard about it outside of a doctor’s office. I feel like it’s changed a lot in the past ten years. Maybe it’s my age, or maybe more people are being diagnosed with it. But, in some ways, it does still feel like a weird edge thing – like most people who have heard of it either have PCOS themselves, or know someone else who does.
MF: Can you describe your journey with PCOS?
Melissa: I’ve always had painful menstrual cycles. I remember being a teenager and participating in a field day track exercise – I ran the 100 meter and then collapsed on the bench because I was in so much pain. When I was 17, I began having monthly migraines. Then when I was 22, they became daily. It was debilitating, but I still went to work. I was always in severe pain. Everyone told me it was just a headache, and I should shake it off. It wasn’t just a headache, though. I had auditory and visual changes with my migraines – they were severe! My primary care physician prescribed a medication that helped with the migraines, but I sometimes had to take it twice a day, and it can be dangerous for your heart. Then, I ended up seeing a neurologist who thought my migraines were associated with allergies, so he placed me on different medication that caused me to gain 80 pounds, but did nothing for my migraines. He prescribed another medication that gave me night terrors.
When I was around 26, I became extremely emotional a day prior to each cycle. I would cry uncontrollably and get my period the following day, so I made the connection. In 2011, I stopped all the medication because I was laid-off from my job and lost health insurance. I experienced severe back pain prior to my menstrual cycle. It was so severe that I couldn’t get out of bed. My last “normal” menstrual cycle was also in 2011. A few months later, I found a gynecologist who diagnosed me with PCOS.
After that, my cycles stopped completely. So did my migraines. I currently have only had a migraine a day prior to my cycle beginning, which happens about once a year unless I’m prescribed hormones from my gyno to induce a cycle.
MF: What are your PCOS symptoms? How do you manage them? Have you found anything that works well for you?
Melissa: I stopped having a menstrual cycle, unless hormonally induced. My health care provider said that according to my labs, I showed signs of menopause at the age of 27. Blood tests showed that my testosterone was super high and my estrogen was super low. She said I could do in vitro fertilization and hormones if I wanted to become pregnant. I always developed excessive hair growth on my face, which is common with PCOS based on my research.
MF: What advice do you have for other people who have been recently diagnosed withPCOS?
Melissa: I think it’s important to know your goals. I don’t want to have a child, so for me, myhormone levels aren’t bothering me now. I feel like they’ve have stabilized in a way that’s manageable. It’s also important to speak with a dietician because I found managing my hormones with my diet made me feel a lot better.
MF: Can you tell me a bit about the support you have for PCOS? What’s helpful? What’snot so helpful?
Melissa: The most helpful thing is speaking with others who’ve experienced it. Not a lot ofpeople even know what it is. I’ve worked in medical research for years, and severalpeople I know have never heard of it. I’ve found that it can be very difficult to find support for the condition. So, it’s important to seek out health care providers who understand it and try to balance hormones as naturally as possible.
MF: When and how were you diagnosed with PCOS?
Rachel: I was diagnosed when I was 14 by my pediatrician because I experienced some symptoms after getting my period (weight gain, hair growth, and acne). All those symptoms could have been attributed to going through puberty, but my doctor ran a few tests and found that my testosterone was elevated, and I had a few fluid-filled sacs on my ovaries. That collection of symptoms led to my diagnosis and I started birth control pills to help control the symptoms. More recently, I was tested for elevated AMH levels (another hallmark of PCOS).
MF: How do you manage your PCOS symptoms? Have you found anything that works well for you?
Rachel: Honestly, my biggest symptom is lengthy menstrual cycles and inconsistent ovulation, which I only became aware of more recently as I started trying to get pregnant. Prior to that, birth control helped to control a lot of my symptoms like hair growth, though I still had acne and trouble maintaining my weight. More recently, I was prescribed metformin, although i don't have insulin resistance, and that helped some with weight gain, though it didn’t regulate my cycles as I’ve heard it can do for some. (Note: metformin is a drug prescribed to patients with type 2 diabetes aimed at reducing blood sugar)Exercise, specifically cardio like Zumba, has also been helpful in maintaining my weight.
MF: What advice do you have for other people who have been recently diagnosed with PCOS?
Rachel: It’s so common! You probably know multiple women who have it. Don’t be afraid to advocate for yourself. PCOS is a syndrome which means it’s really a collection of symptoms and not all people respond in the same way to different approaches. If you want to try something new, ask your doctor about it.
Also, my biggest advice for women with PCOS who eventually may want to conceive: while hormonal birth control pills can help control symptoms, they often mask other issues that may be going on with your cycle. PCOS does not mean infertility, but the more you know about your cycle, the more information you can bring to the table if and when you want to get pregnant.
MF: Can you tell me a bit about the support you have for PCOS? What’s helpful? What’s not so helpful?
Rachel: I have a friend with PCOS and she’s been a great support for me, especially while trying to navigate getting pregnant with PCOS, reproductive endocrinologist visits, etc.
I’ve found it helpful when folks are willing to listen, and less helpful when people without PCOS offer advice (especially diet and exercise advice! Many typical “healthy eating” tenets do not always work in the same way for PCOS folks and trust me… I’ve probably tried whatever you’re suggesting).
MF: So, September is PCOS awareness month. Do you feel like most people know what PCOS is?
Rachel: I didn’t know that! I think some women are aware of it, since I think it impacts something like 10% of women. But unless you have it yourself, or have a close friend or family member who has it, you might not know much about what it actually means. I’m very open with people in my life about having PCOS.
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