When Diagnoses Collide- PCOS and Diabetes

Perspectives

When Diagnoses Collide- PCOS and Diabetes

Type 1 Diabetes has been joining me in this journey called life since I was 7 years old. I’m a born and raised GA peach who graduated from the University of Georgia in 2015 and hightailed it up to Boston immediately after graduation to start working for the College Diabetes Network as the Program Assistant, and I haven’t looked back. I loved being involved in the diabetes community every chance I get. I’ve been volunteering at Camp Kudzu since 2012 where I was a camper growing up. I also blog and rant on the internet about type 1 diabetes, mental health, and now PCOS.

What’s PCOS, you ask? Polycystic Ovary Syndrome, a condition in which a woman’s levels of the sex hormones estrogen and progesterone are out of balance. This leads to the growth of ovarian cysts. PCOS can cause problems with a woman’s menstrual cycle, fertility, cardiac function, and appearance. I will talk more about this definition and other information about PCOS throughout my posts now and in the future. But back to the diabetes part…

After about a year of being sick and getting told by doctors in the small Southern town where we lived that nothing was wrong, something else was wrong, or my parents were overreacting, we went to an eye appointment where we were lucky to see a doctor that works with children with diabetes in developing countries. He told my parents that based off of my eyes he thought I might have Type 1 Diabetes, and we should seek a diagnosis immediately. We didn’t know anything about diabetes at all and went home to look it up in the big medical book (the days before google and WebMD), and all of the symptoms fit.

The doctors tried to turn us away again, but we demanded that they check my blood sugar, and on March 8, 2000 I was finally diagnosed with type 1 diabetes. At that point we decided that the majority of my healthcare would no longer be in our small town in GA, but we would go to Atlanta or neighboring towns for my healthcare. For the next 15 years, we would drive 1-3 hours one way for my diabetes appointments, 30 minutes for eye care, 1-2 hours for allergies and asthma care, and 45 minutes for dental care. We had a hard time finding someone in or near my town that had any grasp or willingness to learn more about type 1 diabetes, and for sassy vocal childhood Mindy, that did not fly. This all changed when I moved to Boston. Now it’s a hop, skip, and a jump away from me to get the care I need, and I have the option to shop around.

Finding a primary care doc (PCP) was another story growing up. We went from PCP to PCP over the years, and eventually I stopped going to one entirely until I moved to Boston. It just never worked out well. My final straw with PCPs - where, and even not-where, I lived -  happened when I was about 13 years old. I got my first period at 13, and from that moment on I had major problems with it. It was irregular to the extreme. Bleeding ranged from two weeks to as much as two months. The pain was so bad and it messed with my blood sugars so much. I couldn’t plan for it because it was so irregular.

Eventually, when I was a freshman in high school, we reached a point where something had to be done. I was repeatedly getting hospitalized for the pain. The healthcare providers we went to either blamed the type 1 diabetes immediately and wouldn’t look past that or told my parents and me that “birth control is bad, and you’ll go have sex.” Most of my sex education was “don’t have sex.”

My endocrinology team eventually got involved and found someone who would at least look into it. When we met with the OBGYN, she decided we would only go with very low-dose hormones and only because it messed with my blood sugars- nothing to do with how miserable I was. Many of the doctors insisted that I shouldn’t be on birth control at my age.

The hormones didn’t work because I experienced no improvements with my period. Eventually I began trying new birth controls. This took about a year to find something to work. No one ever did any blood tests or scans related to the issues I was having.

In college, I experienced a lot of issues with my thyroid and had diabetes burnout as well. I thought my mental health was also tied to taking birth control pills which I had been on since I was about 14. I met with a doctor and decided to go off of the birth control pills for a while to see what happened.

This was when I also learned that day 1 of my period and those problems should have been met with tests and scans and everything. But it wasn’t. So this made it hard now since I had been on birth control for over 6 years. I was only 13 – I didn’t know this was something to ask,  and it also wasn’t my responsibility to know. Eventually my burnout and thyroid problems got better, but my period issues got worse again, so I went back on birth control.

I guess everything was pretty okay- except the pain and blood sugar chaos I often experienced. But I, like so many others, was raised to think “this is how it is with your period.” It didn’t feel very okay to me, but I decided to leave it be with a little planning and pain medications.

Toward the end of June 2016, my period came two weeks early, and I immediately reached out to my amazing PCP in Boston. Next came an OBGYN where I will not be returning, and a new diagnosis of PCOS...along with questions (many!); disappointment at the nonexistence of patient voices; anger at the lack of research and resources on PCOS in general AND diabetes (especially type 1 diabetes) and PCOS; and frustration that most of the focus for PCOS is about being able to get pregnant.  Focus on PCOS and fertility isn’t 100% bad, but it’s disheartening for women who might not want kids yet or at all (like myself) Then I think: am I just supposed to be miserable?

My experience has also left with me awe and appreciation of the diabetes community and the diabetes online community, especially the women in the diabetes community who have come to my aid with the resources that are hard to find, the many sounds of “me too”, comfort, the sentiments that this not okay, and tips/information on PCOS and diabetes that aren’t easy to find.

That’s a little bit about me, mostly about why I’m here and writing these blog posts. Even though I’ve probably had PCOS for a very long time, this journey and official diagnosis are new to me. I’ll be writing during my journey with type 1 diabetes and PCOS:  diagnosis, finding care providers, how I feel, my questions and hopefully the answers to them, and everything in between. Writing helps me process, and I also want there to be more about PCOS and diabetes out there. Welcome to another part of my journey.