PCOS Raises Many Questions

Perspectives

PCOS Raises Many Questions

In June 2016, (now about a month and a half ago), I felt exhausted, “off,” and constantly hungry. My blood sugars started a roller coaster of ups and downs. The last week of June, I slept through my alarm twice which is something that has only happened one other time in my life.

After I slept through my second alarm and had trouble sleeping, I wondered “what is going on?” I brushed it off and ignored it. Because I already have so much going on in my life, I tend to overreact about being sick, but I also have a consistent stream of denial flowing through me. I don’t want anything else “wrong” with me. 

Later on in the work day, I eventually discovered the answer to my question I placed in the back of my head that morning. My period arrived with full force, but it was two weeks early.

I strive to be meticulous with my health. I track my period on a calendar and on an app for my phone. I also describe what is going on with my periods in the app so I know what is normal for me. Why am I meticulous with tracking? I track due to the issues that started with my period when I was 13 years old. I also track for my OCD and of course for my T1D. I know to make changes for the T1D prior to my period to help with the roller coaster of blood sugars, take pain medicine, and to start checking my ketones regularly. I constantly remind myself that I’m more anxious because I’m on my period.

According to all of the data in front of me and the fact I take birth control, my period arrived incredibly early. Besides being early, my gut and my medical history related to my periods told me that something was amiss.  

I’m no stranger to making adjustments as needed with diabetes and for other things like birth control. I called my PCP (primary care provider) to get a change for my prescription for birth control, but after we talked, they asked me to come in. At the appointment the next day, we went over my medical history and how I’d been feeling the past week. They decided to order blood work and believed that I had PCOS. They instructed me to set up an appointment with an OBGYN. My mind started to wander and spin which it excels at because of my anxiety.

I knew very little about PCOS and decided to google it. Google can be dangerous when it comes to health, but my anxiety wouldn’t shut up about not knowing about this. As I started reading, I felt hindsight bias really hit me: the chronic acne that has never wavered, the fact that I’m generally a hairy and sweaty person, the pain, not being regular, etc.

Overall though, I found very little useful information that was applicable to me. I stumbled across a few medical journals and posts from many years ago but basically no patient voices. I prefer patient voices. I saw information about risks and complications that I might be more likely to get if PCOS isn’t managed correctly. I then played out "worst case scenarios" in my head on repeat. 

I looked into treatment, and I wasn’t very pleased with what I found. Contraceptives and fertility treatments were all I found and surgery for extreme cases. Treatment also focused on dieting and exercise as well as metformin. The main focus of all of the information I found was about fertility treatments.

This is not applicable to me right now and most likely never will be applicable. I enjoy kids, but I’m pretty certain that I do not want kids of my own. This sentiment gets stronger every year, but I am open to the fact that I could change my mind later. I know many women with and without diabetes who want children. Some of these women are my close friends. I want to be the cool “aunt” with their children. I respect people’s choices, but I hope for my choices to respected as well. I recognize that for the vast majority of women that fertility treatments are very important for them. Regardless of all of that, this bothers me since not everyone is ready for children yet or ever. Maybe they might not be able to have children for other reasons not related to the PCOS. Fertility treatments are also very expensive. I wondered about women who might not have access or the ability to afford fertility treatments.

Seeing all of that focus on fertility stung because I felt the pressures of gender norms impacting my health- the fact that the focus was on being able to have kids and not my health or quality of life. Seeing page after page reinforced my inner voice that says in many instances my value is based off of having children. I felt like the pressures from society were influencing an aspect of my health which doesn't sit well with me. 

This all really bothered me. The focus on fertility and the lack of information like resources and research. I’m not interested in fertility options. I already exercise and eat (relatively) well. I was not trying anything like metformin again because I didn’t have a great experience the first time.

I began to think, what If I cannot find a birth control that helps with anything? Am I just supposed to “manage” this to fit with gender norms and possibly be miserable?

I then googled diabetes and PCOS. Most of what I found echoed what I saw for PCOS in general, but I also learned that having diabetes makes it more likely you could have PCOS and having PCOS makes it more likely you could get diabetes as well. There wasn't a lot of information beyond that. I expected there to be little information about T1D and PCOS because we're a small percentage of the population. However, I didn't expect there be so little information related to T2D and PCOS. 

That was the moment my anger boiled- I received scare tactics growing up related to diabetes that I have to do this or that. But no one told me that just because I have diabetes that getting PCOS was more likely...

Where was that information? Why was I told the problems with my period were just because I had diabetes? Why didn’t anyone tell me or take a moment and think- diabetes might not be the cause but they could be related? Why isn’t screening a part care? Why isn’t there information in the endocrinologist offices about this next to celiac, thyroid, eyes, etc?

I immediately posted on social media, and that’s when the “me too’s” started flooding in related to having diabetes and PCOS. All of this added to my emotions and wondering why wasn’t there more out there about this.

I received messages from specific women who have been through PCOS and diabetes. They were (and still are) the most helpful resources I’ve had to date (I do recognize they are not doctors and I need to consult with a doctor). I was connected to other women they knew as well. I reached out to DiabetesSisters which resulted in more connections and medical journals that are difficult to find on the web. 

I quickly learned from these women that I need to make sure my endocrinologist and my new OBGYN are on team Mindy. I need to find someone who isn’t going to push pregnancy and blame my diabetes. I also need to make sure that they are open to what I need.  

I learned from a lot of these women with PCOS and diabetes that oral contraceptives continuously have been their best bet. Honestly at this point, I’m done with my period. I’m over it. I’m ready to not have another period ever again.

I felt ready for my upcoming appointments. I’m often ready to advocate for myself as well. 

The advocacy started during the first phone call. Multiple offices told me I could be seen in a few weeks or a few months. This didn't feel right to me. After a few calls, I began begging for help stating my period was awful and still going on. Eventually I brought up my diabetes, and that was when things started moving. Yes, everything going impacted my diabetes, but there is more to me than diabetes. This also frustrated me. Why did my diabetes have to be the reason for people to get things started quickly? Why couldn’t my overall health and quality of life be the force behind everything? Why do people look at an awful and sometimes debilitating period as “just a period and a part of life?”

New questions kept popping up, but I was at least grateful to have an appointment for the next week. I also felt prepared for my appointment and ready to advocate.