PCOS and Endometriosis- It's Psychosocial too.

Perspectives

PCOS and Endometriosis- It's Psychosocial too.

This post was harder to write. Why? Maybe a combination of writer's block, stepping back from health related things, and that I’m at a point where it’s not a series of events anymore. Instead of recounting events, I am in the now. Basically, I’m in limbo hoping that things will work out with my health. About a month and a half ago, I switched birth control and discovered that not only did I have PCOS, but I also had endometriosis.

I still don’t trust my body. Part of me is waiting for my period to come back with full force and throw me through another loop. Each day, I’m pleasantly surprised when I don’t have my period. So far, being on birth control continuously is working out pretty well. In a month and a half, I haven’t had a debilitating period. I don't know what it's like to not have a rough or debilitating period. I'm still adjusting to the wonderful idea that I won't have another period again. It's been a part of my life since my first period over 10 years ago. 

I have however felt the symptoms hit me ever so slightly. It had been so long since I switched birth controls, I forgot that it takes a few months to adjust. When I noticed my acne get worse and felt the cramps, the anxiety in me immediately thought “oh no, it’s about to come back.” When my blood sugars start to not cooperate, cravings return, and insomnia hits, the anxiety takes over. Since my body is adjusting and probably trying to fight back, there’s no consistency. That means- I have to remind myself again (and again and again and again) that things are going okay. It takes time to adjust. Fingers crossed, your period won’t come back. Unfortunately, it's not what I know when it comes to my period. 

 

Needless to say, things are different. I have new diagnoses as a part of my life. I have more experiences that have added fuel to my fire. My identity has shifted- how I look at and interact with the world has changed, and I'm figuring that out as I go. 

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. 

I might feel these emotions all within one conversation. Usually it's a little more gradual than that. The combination of these emotions and the difficulty of managing my blood sugars resulted in one of my worst fears- diabetes burnout. I had had enough. I wasn't okay, but it's okay to not be okay. 

So what do I do with diabetes burnout?

  • I back off from the diabetes community besides my job and my own diabetes.
  • I take a pump vacation for a month and a half. As well as a CGM break for almost two weeks. Which meant also feeling the freedom of being device free for almost two weeks.
  • It meant counseling.
  • It meant canceling appointments.
  • Sometimes I even became passive in terms of health and advocacy related to myself. 
  • It meant pushing self-care on myself. 

Over time, I've been climbing out of burnout. It's not all at once but instead gradual. I've been dipping my toes back to in my usual involvement. 

One of the first things that hit me when I got more involved in the diabetes community again- through chats, discussions, healthcare providers? Beyond the cost, the fertility, the diabetes management, etc-

I want to scream to the world that PCOS and endometriosis- "ARE PSYCHOSOCIAL TOO!"