Weight gain, facial hair and infertility: 3 women share their journey with PCOS
Keke Palmer and Lea Michele are two of the many celebrities who have opened up about how polycystic ovary syndrome, or PCOS, has affected their lives. Palmer has been candid about the effects of PCOS on her skin, while Michele shared that the condition complicated her ability to conceive and her birthing experience.
But they are far from the only ones dealing with this health issue. PCOS is the most common hormonal condition for women during their reproductive years and is caused by an imbalance of reproductive hormones. The condition can cause a host of symptoms, including male pattern hair growth, infertility, acne and weight gain. For many women, however, PCOS can manifest in even scarier ways.
"My freshman year in college, a cyst ruptured," Alicia Wilson, a 27-year-old social media marketing manager and content creator from North Carolina, tells Yahoo Life.
"I threw up a couple of times. I was constantly going back and forth to the bathroom, and I started to see a lot of blood. It got to be an immovable pain. I was on the floor, it was so bad. It was like a horror scene. I'm like, 'Oh, gosh, I don't know what's happening,'" says Wilson, who didn't know she had PCOS at the time.
Prior to her cyst rupturing, Wilson says she did have an extensive list of symptoms that, looking back, were all clear indicators of PCOS. But as is the case for many women, her concerns were frequently brushed off or attributed to other causes.
"My symptoms leading up to that were rapid weight gain, hair growth, lots of hair growth all over my face and just everywhere. I was in constant pain a lot in my groin area and in my stomach, and it was really hard to get acknowledged by my doctors [as far as] what was happening with my weight gain. It was very hard to get the diagnosis, period," she says.
Once her cyst ruptured, Wilson gained a bit more clarity on her condition. But the process was not as straightforward as she would like — something she warns others on her social media platforms to be aware of.
"It is really important for women to advocate for getting that diagnosis, because a lot of doctors will overlook it," Wilson says. "They will attribute it to something else when most of the time it is PCOS. You need to get an ultrasound and be persistent."
For many women of color, getting a diagnosis for any number of symptoms is often an uphill battle. Without proper self-advocacy, many are at risk of never receiving the answers they need. To help combat this and reduce stigmas surrounding PCOS, Wilson decided to share her journey on social media.
Initially, she says, "I was posting just fashion content. But as I was gaining weight, I was becoming more confident in my body and I started posting more online — lots of passion-driven content — and I started sharing with my audience why and about my PCOS symptoms and just kind of sharing my story. So my audience was along my journey as well."
Soon a sub-community of "cysters" began to form. "My audience started telling me they had PCOS, or they were having symptoms," she says. Wilson tried to help her followers by sharing advice based on her experiences, and "it just kind of went from there." She adds: "I started sharing all my PCOS content and any advice that I could give to other women that would be helpful."
Wanting to inform others is a central driving point for creators who choose to share their PCOS journey online, where they are essentially putting themselves directly in the line of fire for unsolicited critiques and opinions on their appearance.
"The scariest symptom to share was the hair and shaving of my face," Thalia LeBlanc, a content creator based in Dallas, tells Yahoo Life.
"Especially because I work in not only social media but media as well — TV and film, acting, music, modeling — and that all involves being in front of cameras and getting your makeup done and having people all up in your face," she says.
Ultimately, LeBlanc decided to share the tabooed realities of living with PCOS in the hope that others dealing with the same thing won't feel so alone.
"I definitely know I'm not the only person that struggles with this because I've seen women that have had a little stubble or a hair or two under the chin, and I had never been afraid of a little bit of oversharing online," the 30-year-old says. LeBlanc wasn't officially diagnosed with PCOS until 2020, but says she had a hunch that she had the condition for over 10 years.
LeBlanc suspected that she had PCOS "back when I was 15 or 16 years old just because my periods just weren't coming as often as all my friends'." she says. LeBlanc also noticed that she was "just hairier than my friends."
Similar to Wilson's experience, LeBlanc's diagnosis took some time. Before finding the doctor who would eventually diagnose her, LeBlanc says she was frequently met with doubt from other practitioners. "I went to this other gentleman. He was an older, white doctor and he didn't believe me. He was like, 'No, you don't have PCOS; you don't have any of that — you're just irregular just like any other woman,'" she recalls. But LeBlanc was adamant that her symptoms were a sign of something more serious, and through her persistence, she found a doctor who confirmed the PCOS diagnosis.
"I booked an appointment with a Black female doctor and waited the four or five months on her wait list. I got in and she told me 'Well, first and foremost, I want to let you know that I have PCOS, so I definitely understand your symptoms, so tell me your symptoms,'" says LeBlanc. "I told her, 'Well, I grow a full beard, I'm getting chest hairs. Now as I've gotten older, I struggle with losing weight. I never get a period. It just seems like my body's out of whack,' and she was like, 'Well, you have three of the main four PCOS symptoms. So I'm absolutely diagnosing you with PCOS.'"
This interaction could be categorized as a routine doctor appointment, but for LeBlanc it was a major turning point in her reproductive health journey. "When she walked out of that room, I literally just started bawling my eyes out and she caught me crying. She's like, 'Are you OK?' and I [said], 'I am; just nobody had believed me before, so it was just like finally I have my diagnosis.'"
She adds: "I think half the battle is knowing that you have it."
But even after getting a diagnosis, some women are left in the dark about the best ways to address their symptoms.
"My doctor said there was nothing she can do for me, just diet and exercise and come back when I want to get pregnant," Meredith Harris, a 32-year-old Baltimore resident, tells Yahoo Life. Harris first began experiencing PCOS symptoms when she was in high school but didn't consult her gynecologist about it until she was 22. She was promptly diagnosed with PCOS but says the advisement seemed to stop there.
Since her doctor told her there wasn't much she could do, Harris spent the next six years trying to deal with her symptoms on her own.
"Through most of my 20s I just tried every diet, I exercised. And my first year of marriage I actually gained 40 pounds, which is common with PCOS," she says.
Harris continued to self-manage her PCOS to the best of her abilities until she was ready to get pregnant and says she immediately sought the help of experts.
"I never thought I could get pregnant naturally, and so I went straight to fertility medications. It took us two years to get pregnant, and I now have a 2 1/2-year-old," she says.
After having her baby, Harris began to hunker down on the lifestyle changes she could make to help lessen her symptoms. "I started eating less processed foods, more natural foods, limited takeout, ate even more protein, and that has helped me to get my period back to maturity as of last week," she says.
Like many, she was initially hesitant to share some of the physical symptoms of her PCOS online but slowly became more comfortable once people in her comments began sharing their PCOS stories as well.
"When I started, I was so ashamed," she shares. "I still thought I was ugly. I didn't tell people that I was growing a lot of facial hair, but I started to gain more confidence because more people reached out to me and said, 'I have PCOS too,' 'You're the first person I ever talked to with PCOS,' 'Thank you so much for sharing your story,' and over time, I was like, 'Oh, OK, well, I'm not the only one,' and I started to open up more."
There is currently no cure for PCOS, but there are several supplements and treatments, including oral contraceptives, that can help mitigate symptoms. But for Harris and many others, lifestyle changes and sharing their story have been some of their greatest sources of relief.
"I now feel much more confident, and I don't feel like PCOS is a shameful condition that I have," says Harris. "I feel like I can still live the life that I love."
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