It all started with an awful tweet.
About nine months ago, I was online and saw a tweet someone wrote about “thin privilege” not being real. It said fat people “simply choose to be overweight.”
Rage sparks flew as I furiously typed out my reply: “… to suggest that people ‘choose’ to be fat is offensive and simply untrue. As someone who’s been told by multiple doctors regarding my PCOS and weight loss ‘I’m sorry you’re basically just screwed’ I really get my back up about this.”
As someone who has been told by multiple doctors regarding my #PCOS and weight loss “I’m sorry you’re basically justscrewed” I really get my back up about this.
The ensuing dramatic tweet storm was how I “came out” as a woman with polycystic ovary syndrome (PCOS)—and it was one of the best things I ever did. Within hours I had thousands of replies and messages from other women saying, “No way! Me too!”
I shouldn’t have been surprised by the response. PCOS is a super common hormonal disorder (it affects one in ten women, according to the Office on Women’s Health), but in my experience, it may be much higher than that, as so many women go undiagnosed.
Why? First of all, there’s very little research money being devoted to PCOS: Less than 0.1% of the National Institutes of Health (NIH) budget is allotted to the condition. The statistics are dated and the knowledge is minimal. Another major issue is how often women’s pain is ignored or minimized by the medical community, our significant others, and even ourselves.
My own experience with PCOS shows just how hard it is for women with the condition to get a proper diagnosis.
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In 2015, I was at a high point in my career: Superstore, the sitcom I star in as Dina, premiered on NBC and was getting rave reviews. But at the same time, my health hit rock bottom.
For years I’d been having pain, skin issues, irregular periods, severe PMS, and other worrying symptoms, but it wasn’t until I gained 30 pounds in six months (without any change in my diet or exercise habits) that I finally acknowledged something was really wrong and made an appointment to see the doctor.
“My ovaries were surrounded by countless cysts.”
“Well, at 32, you are getting older now,” he started. “So your metabolism is slowing way down. Try eating less and exercising more.” That was it. His “fix” for all my medical problems was to call me old at 32 and give me advice so generic I could find it on any random website.
Still, I gave it a shot. I threw myself into an extreme diet and exercise routine. I’m an actress and as such, my career depends on maintaining what I look like, so I knew I couldn’t keep gaining weight without it being noticed.
Spoiler alert: My crash diet didn’t work. After a month of deprivation and agony, I’d gained five pounds. I was so ashamed and embarrassed. I felt like there had to be something wrong with me. Otherwise, why wasn’t this brilliant medical advice working?
My dermatologist was the first one to suggest PCOS.
In addition to weight gain, I’d also recently started having major hormonal acne breakouts, again with no change to my daily routine. I went to see a dermatologist and she took one look at my skin and said, “I think you have PCOS.” At the time, I hadn’t even heard of it, much less knew what that meant, but I took her recommendation and went to my ob-gyn.
There, my ob-gyn did an internal ultrasound (which, by the way, involves a foot-long wand and a giant condom, and is exactly as comfortable as it sounds) and confirmed the diagnosis. She showed me the monitor and it seemed my ovaries—each one surrounded by countless cysts that made it look like they were wearing pearl necklaces.
‘ I told doctors for years I was in severe pain. Only after they’d cut me open did they believe me.’
My doctor also did blood work and discovered my hormones were out of balance and I was pre-diabetic, both typical symptoms of PCOS. I came to learn that I had all the hallmark symptoms of PCOS except for facial hair, which, thank heavens for small blessings, I guess.
Once I got my official diagnosis, I felt simultaneously exultant (I was right! There is something wrong with me!) and terrified because I had no idea what this meant for my life. My doctor started me on Metformin, a drug to get my blood sugar under control, and progesterone pills to help get my thrice-yearly periods to become regular again.
Eventually, my chronic pain forced me to have surgery in 2016.
The surgery was to remove some of the larger cysts that were causing my pain. Afterwards, the surgeon basically told me my insides were a hot mess: I had even more cysts than they’d thought and bonus scar tissue twisting everything together. “You must have been in so much pain,” she said. I almost burst out laughing.
“The feelings of despair were so overwhelming, I would debate how I should end my life.”
The whole situation seemed so bizarre. I’d been telling doctors for years that I was in severe pain and only now, after they’d cut me open and saw the damage, would they believe me. Is it too much to ask to just believe women when we say we are in pain? We shouldn’t have to “perform” pain to be taken seriously.
I learned this lesson again when I finally realized that the progesterone pills—which I would take for one week each month when I didn’t get my period—were causing me to become seriously depressed, even suicidal. There were times I would lay in bed and the feelings of despair were so overwhelming, I would debate how I should end my life just to end the pain. I knew that I couldn’t go on this way but was also wildly ashamed of what I had been experiencing.
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Finally, I mustered up all my courage and told my endocrinologist, “I’ve been having suicidal thoughts, and I think it’s from the progesterone.” Her reply? “No, I don’t think so.” She wouldn’t accept my report of my own experience in my own body! (Note: Since connecting with many other PCOS sufferers I’ve come to learn that lots of women have had the exact same experience on progesterone.)
I spent the next couple of years going through a trial-and-error process of figuring out what worked best for my body to help control my symptoms. There is no cure for PCOS so it’s all about how to make living with it as tolerable as possible. I found some things that didn’t work (cough, Paleo diet, cough) and a bunch of things that did help, like taking daily inositol supplements, which are supposed to help with fertility and reproductive health, cutting down on dairy, and acupuncture.
You might notice that exercise isn’t on either of those lists. That’s because women with PCOS often have a love-hate relationship with getting sweaty. The disease, all on its own, is completely exhausting, so when I work out I don’t get that happy endorphin rush that makes people want to do it again—I just feel like I need a nap.
However, I know that fitness is an important part to not just managing my illness but also staying healthy throughout my life. So I found a way to love it even when I hate it: I partnered with my friend Alicia Todisco who also happens to be an amazing personal trainer. She makes it fun by changing up my routine constantly (we mix circuit training with strength training) and it keeps me accountable because I love hanging out with her.
Today, my PCOS is under control and I’m feeling much more stable, but I’ve still got some serious scars from my experience.
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And no,I don’t just mean the ones over my poor, broken right ovary. Feeling unheard and discounted by doctors and other important people in my life left me feeling so isolated and scared. I felt like I couldn’t trust my own body or my own experiences. And I knew I didn’t want any other woman to feel that way! So when that fateful tweet gave me the opportunity to share my story, I jumped on it.
Since my Twitter reveal, I’ve also created the Instagram account PCOS Sisterhood to share my experiences and connect with other brave women dealing with this issue. It’s been life-changing. Talking to all these other women has helped me realize that if I—a privileged white lady with access to great health insurance, meal delivery services, and personal trainers—am struggling this much with PCOS, then I can’t imagine how much worse it must be for women without my resources.
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This also inspired me to partner with PCOS Challenge, a non-profit organization working to raise awareness and get increased funding for research into the disease. On March 8, 2019, I even visited Capitol Hill with them to tell my story to lawmakers in hopes of having them agree to support PCOS awareness and research.
Every woman with PCOS is different, and no two journeys are alike, but there is one goal we all have in common: We have a voice, we’re not afraid to use it, and it’s time that people start listening.
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