The Emotional Roller Coaster that is Endo

It caught me totally off guard. I was in the middle of a road trip, two hours from my destination when I pulled over to get gas. As I was peeing in the restroom, I wiped and saw red. So much red.

I had to fix myself up, exit the restroom and pick up pads.

When I got back in the car, I checked the app that tracks my periods. I have a Garmin smart watch, which connects to the Garmin Connect app—which is awesome in tracking sleep, body battery and your cycle.

I checked, and my period was supposedly still a week away. But I had just witnessed and felt such a surge of blood that I expected had to be my period. This was more than spotting.

But that’s the thing about endometriosis. There almost is no rhyme or reason. I had been eating mostly vegan, and that had been helping. But then between my travels for work and the holidays, I fell off the no-meat wagon.

Part of why this is all so unexpected for me is that I have known for 14 years that I had endo, and I had surgery as soon as I found out. That surgery kept me pretty much symptom-free for all that time, and now I am back in the space of what feels like starting over.

It’s so frustrating

I’m in that place again where I don’t know what to do. And I hate that I can’t track my periods normally. I never know if what I’m looking at in my panties is an abundance of spotting or if this blood is actually my period.

Is there a way to tell the difference? For a while, I had thought that the endo spotting was darker blood. Gummier. Blood that had been stagnant for a while. But what came out on the road trip was bright red.

In the days that followed, no more bleeding happened, so that was not my period. From this, I now know that color tells me nothing. Nor can that app tell me exactly when my period is coming or prepare me for the spotting events in between.

That feeling of defeat

With endo, it’s hard to feel anything but defeated at times. It’s like we have to live as if every day is or might be our period. To always be ready with period supplies. I am lucky now I live in Florida. I can keep these things in my car, and can refill the supply as needed.

When I first was dealing with endo, I lived in New York City. I guess I was lucky then in that there was a bodega or CVS on every corner selling tampons and pads. But so often I would be caught in a bathroom stall without supplies, needing to plan and plot how I was going to make it out of the stall and to the place that had what I needed—and then back to another bathroom. So exhausting.

Is there hope?

Right now, I am trying to tell myself there is hope. I know what I need to do. I need to make an appointment with my gyno and get checked to see what I am dealing with.

But I’m scared because sometimes it feels like a lose-lose, right? If my endo is bad enough again to warrant a second surgery—well, then I need to have surgery. I am already nervous, thinking back to the last time and how I panicked just before the anesthesiologist had me count backward from 10.

But, maybe surgery isn’t the answer? I don’t know right now. I’m in the place of unknowing. And I suppose that is part of the journey.

I’ve been reading a lot about alternative, Eastern medicine and what these approaches say about endo. They say that endo is much more common in today’s woman because we are working so hard and achieving so much. Yes, that’s great, but all that stress is putting an added strain on our bodies, which causes an imbalance in our hormones and reproductive systems.

All this for me makes sense. I took up a second career in the last two years, and only in the last year did the endo come back. Sure, it’s a pain. But, it might also be a gift. It’s a signal. A message from my body that I am not living in balance. That I need to slow down. So, I’m starting down the path of Eastern medicine—and yes, I will also see my Western-medicine gyno to get more information. That’s where I’m at.

Today, I am going to work on practicing acceptance. And possibly gratitude. I’m grateful that I had 14 years of relief from endo symptoms. That was a huge gift. And maybe, maybe the symptoms have come back to help me learn a lesson in how to take care of my body. I’m not sure yet. And accepting that uncertainty is the challenge for today.