Type 1 Diabetes and PCOS: My Story and Tips
The thing about autoimmune conditions, in my experience, is that you never get just one. You start with one and then slowly collect others over the years, until you have a small collection of them as various bodily processes stop working. It’s not a fun experience, but one that many of us with diabetes unfortunately have to experience.
My PCOS Story
I was diagnosed with diabetes at age 10, and that was my only chronic condition until I turned 17 and my periods suddenly became very irregular. I wasn’t tracking things super closely because I was a teenager and had only a basic understanding of the menstrual cycle. After a few months, I went to see my family doctor and was sent for a pelvic ultrasound, where it was discovered that I had cysts on my ovaries. That, combined with my irregular periods, was enough to diagnose me with PCOS, or polycystic ovarian syndrome. PCOS is typically diagnosed via a combination of ultrasound, bloodwork (looking for hormone concerns), and period irregularities. You need at least two of the three in order to be diagnosed here in Canada.
After being diagnosed, I was prescribed the birth control pill, as a lot of women are, and my periods resumed at a 28-day frequency. I was lucky that I didn’t have any weight gain or acne from my PCOS, so the pill “solved” my problems for a while. Because I was a teenager and wasn’t managing my diabetes super well at that time, I can’t comment on whether starting the pill had any impact on my blood sugars, unfortunately.
I stayed on the pill for ten years without any breaks, until I was 27. My experience with the pill was fine and I was happy with it, but at 27 I started wondering what might happen if I wasn’t on the prescribed hormones. Would my cycle be normal? Would I have issues like before? I wasn’t thinking of having kids anytime soon, but diabetes prep was being brought up by my endocrinologist and health care team, so this seemed like a good time to figure out what was happening with my PCOS diagnosis and cycle as well. So, under the care of my family doctor, I decided to go off the pill in January of 2020 to see what would happen.
If you’re familiar with anything about PCOS, you likely could’ve guessed that my cycle went MIA as soon as I went off the pill, and you’d be correct. That, and I gained about 10 pounds over the first few pill-free months, and developed some lovely hormonal acne all along my jawline that wouldn’t go away with any of my usual methods. In a word, it sucked. My doctor encouraged me to just wait it out and trust that my body would realign itself soon, but that didn’t happen. It was a full eight months before my period returned, and it took a good amount of work to make that happen. Nine months! It was a trying experience that I wouldn’t recommend to anyone.
How I learned to manage my PCOS with diabetes
The journey to getting my PCOS under control was a long one, and it involved steady changes to my diet, exercise, and overall lifestyle with the help of my family doctor and a registered naturopath. I’m going to walk through what worked for me, as well as any diabetes-specific callouts I think might be helpful for others.
Diet
Diet is often the first thing PCOS experts point to as a place to start managing the condition, and that was true for me as well. My way of eating up until this point was pretty good, although I’ve always had a strong sweet tooth and wouldn’t exactly call myself a gourmet chef. To help manage my food, I really leaned into balancing meals with a mix of healthy carbs, fat, protein, and fiber to reduce blood sugar spikes, which can be behind a lot of insulin resistance with PCOS (Kelly LeVeque is a dietician who has some great books that break down eating for blood sugar management, and her philosophy was basically what I started following). I did this slowly over time, starting with tweaking what I was eating for one meal over the course of a few weeks before moving on to the next one. It was an advantage to have a continuous glucose monitor (CGM) while doing this because I was able to watch exactly what happened after I ate and whether something was causing any spikes. I really learned which foods worked well for my body. As a bonus, I was able to fine-tune my bolusing and basal rates during this time because I was so on top of my food and nutrition intake, and my A1c dropped a whole percentage point over the course of a few months.
After making these food changes, a typical day now looks something like having my usual smoothie for breakfast (I always eat the same things, I’m boring), a kale salad with chicken and avocado for lunch, nomz or greek yogurt with mixed berries for a snack, and then salmon with roasted veggies or chickpea pasta for dinner. Going back to my sweet tooth, most nights I finish off with either a healthy-ish cookie (or three) or a few squares of chocolate, which I don’t see myself ever giving up. I do still see some blood sugar rises on my CGM just due to daily living, which is normal and I don’t stress over it (I’m not aiming for a 24/7 flatline graph!). I’m also not super strict about what I eat, but balanced, whole-food eating has now become the default and I miss it when I go a few days eating out or when I’m on vacation. I also never gave up dairy or gluten which I know works for a lot of people with PCOS, but they didn’t seem to bother me.
Exercise
Similar to food, I was already exercising regularly, but I did have to modify what I was doing. Surprisingly, I actually had to dial back my exercise. I was doing three spin classes a week at home on my Peloton bike, as well as walking a lot and doing a few strength classes a week. I kept the weight classes and walking, but cut back the Peloton spinning to once a week (I still love it for my mental health!). I wish I could say I saw a big body composition difference here like some people with PCOS do after adjusting their exercise, but my body looks basically the same. However, I do think this helped with reducing stress in my body and allowing it to slow down and relax, which I think helped to get my cycle back on track. I did have to alter some of my background basal rates to adjust for the lack of spin classes and increases in weight training, but after a few weeks of trial and error we were off to the races.
Stress Management
This one was a bit more subtle, but I think it had a big impact in the long run. I decided to go off the pill while working remotely because of the pandemic and going through countless lockdowns, so it was a particularly stressful time. When I had my bloodwork done, it showed that my cortisol levels were high, so trying to chill out more was a top priority. To help do this, I started meditating several times a week, taking a walk when I got stressed instead of eating sugary foods (still a work in progress), and doing yoga outside in my backyard so I could be in nature as much as possible. I think lowering my overall stress was key in helping to get my periods regulated, and I try to continue these strategies today.
Tips for other diabetics with PCOS
Be open to speaking to a variety of health practitioners to figure out who might work best for you and your PCOS management with a holistic lens. In my case, it was a mix of both traditional medical professionals and some holistic providers. It’s easy to tell on an intro call if someone has a surface-level understanding of diabetes versus having worked with clients who have had diabetes in the past. I always try to find someone who has experience with clients who have similar health profiles as me, regardless of their area (acupuncture, naturopath, dietician, etc.) but I also trust that I know my diabetes best. Don’t blindly follow advice without doing your research and listening to your gut.
On that note, be initially skeptical of any supplements or medications, and do your due diligence before adding anything to your routine. Some supplements have sneaky ingredients that can cause blood sugar spikes (like one I saw that included crushed medjool dates as a main ingredient…something I use to treat lows!) or other blood sugar reactions. Get expert advice when needed.
I started taking a scoop of inositol in water with my lunch and did so for about seven months. I didn’t notice an impact on blood sugars, but that’s just me. I stopped taking the inositol after my periods came back and found that I didn’t need it long-term, although I know some people do.
There’s A LOT online about the importance of “avoiding/limiting sugar” in order to successfully manage PCOS, and this initially stressed me out a lot. As a type one, sugar is unavoidable for me because of lows (...and because I love sugar). I tested using medjool dates as a “natural” sugar source vs. conventional candy to treat lows for a few months and saw no difference in my PCOS, so I think this is a case where sugar = sugar. I’m living proof that you can regulate your cycle and any other side effects while eating a small but steady amount of sugar on an ongoing basis, so don’t lose hope! It’s not as all-or-nothing as some people make it seem.
Make changes slowly so you can isolate what could be having an impact on your blood sugars. It can be tempting to overhaul your diet and exercise and start taking supplements all in the same week in an attempt to see changes quickly, but that’s a nightmare for determining what’s impacting your blood sugars (or by how much). Try changing only one thing at a time for a few weeks so you can keep your diabetes relatively stable while getting a handle on your PCOS.
Overall
I’m happy to report that my PCOS is currently very well managed by lifestyle without the need for any ongoing medications (although I would certainly take them if needed, lifestyle doesn’t work in a lot of cases). In fact, my most recent bloodwork showed everything to be in a non-PCOS range, which I’m really proud of. I have a consistent monthly cycle for the past two years, and I’ve also cleared up my hormonal acne and only get the occasional flare-up here and there.
If you’ve been diagnosed with both PCOS and diabetes, it’s easy to feel overwhelmed and not know where to start when it comes to managing both. I was there, sifting through academic studies and interviewing complementary health professionals who were experts in PCOS but knew very little about diabetes, and I remember feeling discouraged and wondering if I would ever figure it out. But I did by cobbling together my own system that worked for the PCOS part and the diabetes parts, and it wasn’t so bad, although it did take longer than expected. I know it will likely be a lifelong journey, but I feel so much healthier than I did before making these lifestyle changes. Ultimately, my diabetes management also benefitted a lot from getting my PCOS in a better spot. Trust me, you’ve got this!
