Wonder where my blog posts about PCOS, Endometriosis, and Diabetes have been? Well, they’ve been happening!
So after my diagnosis of PCOS and alllllll of the questions and frustrations…. I started guest blogging at DiabetesSisters about PCOS and T1D (eventually adding endometriosis after that diagnosis). I’ve been blogging once or twice each month about my journey and thoughts- and guess what- it will be continuing in 2017 once per month!
In kind of related news, not to my posts- THIS AWESOME TAMPON AD came out-
So here are some snippets of my posts (and the links for you to explore!)! Sometimes I struggled to write, but having a commitment can really help with writer’s block!
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…
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?”
Why have I’ve grown up with scare tactics about taking care of myself to avoid complications? But those complications are still only a chance and tied to many factors.
I get screened for celiacs and screened for thyroid issues. But there’s still just a slight chance.
But my chance of getting PCOS (or many other diseases related to hormones) regardless of my family history and regardless with how I managed diabetes is higher than all of that. Yet- there’s nothing.
We don’t talk about it. We don’t screen.
I feel like I was missed and that others are being missed, and I want to know why. I know it’s taboo, but that’s not an excuse.
The relief flooded over me. I knew I still had a ways to go, but finally something was changing. I could feel the tears fill my eyes again. I finally had the progress I’d been fighting for. Someone finally listened. I walked out of my appointment with a new prescription and a follow-up appointment with the specialist in 3 months. I also had instructions to come back in if my period didn’t stop, I started feeling poorly again, or my period started again. The even better news? If I was period free and symptom free for over 3 days, I’d be able to run and work out again! This was the best news I received in over a month. After a period approaching 7 weeks, it would hopefully and finally be over.
It’s also been a whirlwind of emotions. Honestly, probably what you expect out of new diagnoses. My emotions vary greatly. I go from appreciation that I finally have answers. To disappointment that there isn’t more research, screening, voices, or information out there. To frustration that I feel like being a patient means my experience doesn’t count for enough. To feeling grateful “me too’s” exist. To anger because I feel missed for so long. To general confusion. To annoyance that social norms influence this part of heath so much so it’s treated as “no big deal since it’s just a women’s issue.” And finally to relief that the plan is for me to not have another period ever again.
The other thing that really bothered me about all of this? THE COST. It already costs more to be a women- the unofficial “pink tax” and that products for your period are often taxed as a luxury item. Many people have added up the costs over a lifetime. (plus all of the other costs).
I decided to add up how much it would have cost me if I didn’t use a menstrual cup during my over 6 week period. The numbers and costs for a VERY heavy period that lasted over 6 weeks would have been about $175 dollars- this is just for tampons, pads, liners, and pain meds. I think it could have been much more because of how heavy it was- I would have needed to change my tampon or pad about every hour.
Finally, my period wasn’t predictable, at all. The time between periods might range from two weeks to two months. There wasn’t a planning or any warning so I couldn’t even prepare for any of the above. (PCOS is to thank for this).
So basically- let’s just intensify all of the symptoms associated with a period, and maybe add some more due to the endometriosis and PCOS.
Luckily, birth control helped me with just about all of the symptoms in my life, and now that I am on continuous birth control- I don’t even have a period. Not having a period, has also helped with my diabetes management.
I’ve frequently gotten upset about the lack of information for PCOS and endometriosis in general and related to diabetes, but I’ve learned that the lack of information- the idea that it’s taboo starts with just periods in general which I knew- but I didn’t know to the extent of how it relates to diabetes. There’s so much information related to pregnancy, but what happens to children? To women who aren’t ready for kids yet or at all? Those are some of the many questions flying around my head constantly.
It shouldn’t be taboo. There’s so much we can learn- from research and each other. There’s more that can be done and figured out- to go beyond barely managing it.
Birth control is a start, but I strive and wish for more that can help me.
Ready to continue these discussions in 2017!
Hey you! Yes, you!
If you enjoyed this post, please comment and share. I’d also appreciate your feedback.
and of course-don’t forget to keep up with “There’s More to the Story” via email! (Right sidebar towards the top).