Sometimes, it’s too easy to put your own health on the back-burner as you try to take care of everyone else. This was what Maci Bookout found herself doing for not one, but five, years, thanks to a lack of support from medical professionals and a packed schedule filled with familial responsibilities after a positive PCOS diagnosis.
It was only when her symptoms got too painful and overwhelming to manage that Maci decided to seek out more information. Surprised by the lack of funding and research when it came to treating PCOS, Maci decided to embark on her own advocacy journey: one that begins with awareness, and ends with better science-backed resources to help all women who struggle with this hormonal condition.
Nice to meet you! Go ahead and introduce yourself.
Hi! My name is Maci Bookout. I’m a proud mother, New York Times Best-Selling Author of the book Bulletproof, and PCOS advocate (I shared some of my PCOS struggles on the MTV show I appeared on). I currently live and work in Chattanooga, Tennessee, where I was born, and I enjoy most of my weekends with my kids.
What did your PCOS journey look like?
My journey is slightly unusual in that I received a positive PCOS diagnosis at a relatively young age, when I was 17.
I had visited the ER on three separate occasions, each time for excruciating pain I was experiencing in the pelvic area. They ran numerous scans and tests, which all returned normal results, so I eventually made another appointment with my OBGYN to figure out what was going on. They ran different tests that time and conducted an ultrasound, as well: it was only then that I was diagnosed with polycystic ovary syndrome.
How did you feel about your PCOS diagnosis?
To be completely honest, for the first five or six years after I got diagnosed by my OBGYN, I did my best to ignore my symptoms. That was relatively easy, as I was a busy young mother, with most of my free time occupied taking care of my son. On top of that, my doctors didn’t put a lot of effort or energy into understanding or treating my symptoms (they didn’t have answers to any of the questions I asked), so I brushed my diagnosis under the rug for as long as I could.
Why did you decide to confront your PCOS head on?
It eventually got to the stage where I couldn’t ignore what my body was telling me everyday. My PCOS was strongly impacting my health, wellbeing, and overall life: I had to take action.
Unfortunately for me - and all the other women who have PCOS - the quality of information and research available regarding treatment and managing symptoms was sparse. (Something I hope to see change in the near future through my advocacy work). Since I already had a following through my MTV appearances, I decided to use that same platform to share my PCOS experience. I knew that I couldn’t be the only one going through something like this, and I was right: since then, so many women have reached out with similar stories.
What change do you want to see in the women’s health community in the future?
I believe awareness has a huge impact on funding and research.
A big part of what I hope to do through my advocacy is to shine a spotlight on a condition that many women don’t even know they have, and encourage others to take what their bodies are telling them seriously. Don’t suffer in silence. Don’t ignore it like I tried to. When we all join together, we refuse to let this condition - one that up to 10% of women struggle with - be placed on the backburner.
Ultimately, I would like to see increased availability surrounding PCOS treatments, more awareness (in the form of more women asking their doctors for testing and ultrasounds), and more physicians taking a proactive approach to treatment. Many medical providers and women who deal with PCOS don’t realize that PCOS impacts virtually every part of the body, thanks to it being a metabolic and endocrine disorder, and yet so often we are misdiagnosed or our symptoms are played down! There needs to be a higher standard when it comes to women getting the attention and healthcare they deserve.
What advice do you have for women who suspect they have PCOS, or have recently been diagnosed?
My number one recommendation is to listen carefully to your body.
You know your body better than anyone else. Keeping this top of mind will be invaluable in navigating your PCOS journey and not settling for anything less than a doctor who completely listens to you and advocates for you.
Next, I would recommend the right supportive resources. Think blogs, groups on social media, or even friends and family members who are going through something similar. I recommend the advocacy source, PCOS Challenge, as well. PCOS can feel really lonely at times, so making connections in the PCOS community will help you feel like people have your back. They can also be great soundboards for when you are making a treatment decision, or sources for advice when deciding on the right doctor.
I can’t emphasize this last point enough: finding the right healthcare providers to fight in your corner with you. Without specialist knowledge and information around PCOS, the whole process can feel overwhelming and never-ending. Don’t be afraid to hold your physician to a high standard: don’t accept being dismissed, and know your doctor should work with you. Don’t be afraid to get a second opinion or to seek out a specialist, if you are able to.
Any final thoughts?
Just remember to be patient with your body. What works for one person may not work for you, and that’s okay. Everyone has their own journey. Good luck! Which is easy to do when you're busy taking care of everyone else instead of yourself, and when the professionals who are supposed to have the information and answers, simply don't. When I could no longer suppress my body screaming at me and realized my PCOS was strongly impacting my everyday life, I decided to take action. Unfortunately for me (and everyone with PCOS), the amount of information and quality of treatment available was still lacking in a major way. I quickly learned that my only option was to exchange symptoms for side effects, and it was extremely disheartening. I started to think, "I can't be the only one going through this!" That's when I chose to share my struggle with PCOS publicly on MTV. Doing that became the catalyst for my advocacy work, and helped me understand the amount of people struggling with PCOS. This also allowed me to understand the impact that awareness has on funding and research. I'm still active in advocating for PCOS Awareness and I encourage anyone interested in advocating for Polycystic Ovary Syndrome to visit PCOSChallenge.org!