“I’m trying to change the narrative”: How one Allara patient learned to listen to her body and manage her PCOS

Maura Kate was diagnosed with PCOS 10 years ago – but it wasn’t until recently that she found the solutions to feel her best through the Allara care platform. Below, Maura Kate shares her PCOS journey, and the care that’s supported her along the way.

Could you start by telling us a bit about yourself?

I work as a science writer for the National Cancer Institute, part of the National Institutes of Health. I’m 37 and live in the Hudson Valley in New York. I enjoy hiking, painting, reading, spending time with my nieces and nephews, checking out what’s happening in my town, and taking workout classes at my gym!

When were you diagnosed with PCOS, and what has the journey been like?

I was diagnosed with PCOS about 10 years ago. I had experienced irregular periods since I was a teenager, but in my late twenties, the time between cycles was increasing dramatically. I also started having really severe mood swings. Additionally, I had noticed that carbs, like bread, made me crash so hard – I would have to take a nap an hour or two after I ate a sandwich or pasta. It just felt like something was really wrong.

I decided to seek care to try to get to the bottom of my symptoms. The first doctor that I went to diagnosed me with PCOS and prescribed me 500mg of Metformin right away. That actually corrected the irregular periods pretty quickly, but over time, I gained weight and needed to increase my dosage. I did not stay with that same original doctor, and it was confusing to navigate PCOS with various other doctors. Some of them, one an endocrinologist, told me that I did not have PCOS, so I stopped taking metformin for a few years. But when I went to another doctor, they said I did have PCOS! The care was very spotty, and I had to put the pieces together myself.

I didn’t feel like I was getting a lot of information during my doctor’s visits. I never thought of the doctors as useful for anything other than getting metformin prescription refills. I did a lot of research and self-education to understand and manage PCOS as best as I could on my own. It was empowering sometimes, but more often it was exhausting.

Why did you decide to sign up for Allara?

My periods were becoming irregular again, with very long times between cycles. Sometimes more than 40, 50, or even 70 days would pass between my cycles. I wasn’t sure what to do because I was already at a high dose of Metformin. While that was happening, I saw an ad for Allara. In the ad, the founder explained that PCOS is one of the most common disorders among women in the US, but there's so little research or infrastructure within the medical community to support women with this condition. She said that Allara was trying to address that gap, and that was really intriguing to me. I experienced the negative consequences of that gap, and I just really liked the holistic model of care the founder described: having a whole team of experts work with you to address symptoms specific to your body. It sounded like exactly what I needed and wanted.

How has your experience been with Allara?

My experience with Allara has been really wonderful from the beginning, and I can't recommend their platform enough. With help from my Allara providers, my cycles have come back down to 35-39 days long!

To give a sense of what my care looks like: I get labs done and meet with my nurse practitioner every six to eight weeks to discuss the results and adjust our strategy, if we need to. I also work with a Registered Dietitian to implement a lot of dietary and physical activity changes that are still in progress. Behavior change is a lot harder, after all!

At the beginning, I met with my dietitian just once a month. But we decided I needed weekly support to have the accountability I needed to make small, gradual behavior changes.

We focused on one to two small, achievable goals at a time, to ensure incremental progress, rather than trying to do too many things at once and getting burned out. I feel very well cared for by the team of providers that are working with me. It has been a welcome relief after the piecemeal care I was hodge-podging together on my own.

One of the things that I like the most about Allara is the peace of mind. Before, I was never really sure that what I was doing was really the correct thing to do. There's so much information out there that tells you one thing or another, it gets overwhelming and confusing. With Allara, I felt more confident in the changes I was making because they were evidence-based and coming from professionals who specialized in PCOS.

What has been the most helpful advice you received about hormonal health?

Distilling the main goal down to blood sugar control, which means prioritizing the following changes:

• Exercising after meals, even only 5-10 min walks, has a big impact in lowering blood sugar
• Increase protein and fiber intake, and eat protein or fiber before eating carbs to prevent glucose spikes
• Build muscle by lifting weights. Muscle uses glucose (even when you’re not working out). More muscle results in lower blood sugar levels.

Small steps make a big difference. Let taking those steps consistently be the measure of success more than the number on the scale or waist size.

Is there any advice you'd give to someone struggling with PCOS and body image?

One thing that has really sunk in from working with Allara is that PCOS is simply a condition that I have, not a character flaw or moral failure. It’s not my fault. My providers have helped me release some of the shame I carry from the symptoms of PCOS. Weight gain is my main insecurity, but I’ve learned that it's not because I don’t eat well, or was very undisciplined with my eating, or any kind of character failure. Instead, I have a hormonal condition that I need to address and care for in the same way that someone with any other medical condition has to care for themselves.

I'm trying to change the narrative. Having PCOS has actually been an invitation to really care for my body compassionately, to give it what it needs and not be in battle with it. To listen to it rather than criticize it.

Physical activity isn't primarily about losing weight so that I can look “good enough” to be attractive or to meet some standard. No, physical activity is about lowering my glucose so my body can function well, and so I can feel good. Lifting weights is about getting stronger and building muscle mass so that my glucose levels stay stable. It’s all about taking care of myself and listening to what my body needs. I would be lying if I said I didn't care about my body image, but it's just not the primary goal– my health is.

Is there anything else you want to share about your experience with Allara?

Dietitians can only help you as much as you let them. Your work with them really needs to be collaborative.  Sometimes, I wanted the dietitian to do the work for me, but it doesn’t work that way. For example, she can’t create all my meal plans, because I’m the one who knows what I like to eat. Working together made it possible to create meal plans I could actually stick to and also that would help me reach my goals. It’s hard work, but it is SO much easier with friendly, evidence-based support from an Allara dietitian!