Endo & PCOS

I had a whole journal entry written out that I thought I would end up posting. And maybe I still will. It was a little prettier and more eloquent and a little more encouraging, but that’s not the post that I feel like sharing right now. This one is a little messier and chaotic. And you know me, writing helps me process, so welcome to yet another peek into my journal: 

I’ve had chronic abdominal pain for a long time. Just like with my POTS symptoms, I always thought that everyone experienced what I did, but just didn’t talk about it. But the pain has gotten worse and quite frankly, has become unbearable.

Endometriosis runs in the family so I figured maybe that could be the cause so I booked an appointment with a specialist. Which is a big step for me. I haven’t had great medical experiences and honestly, I struggle to trust doctors. 

So you could say that I had a lot of feelings leading up to this appointment. Incredible fear for being told that it’s all in my head again and that I’d just leave with no more direction or answers than I walked in with. 

But that wasn’t the case this time. It was actually quite the opposite. It was oddly enough the best appointment and best doctor that I have ever had. 

He sat down and listened to me. Invited me to share my experiences with him, didn’t cut me off, and didn’t rush me. He let me lead my appointment and he actually knows what POTS is. (This is more shocking than you know). And it was the first time that a doctor asked me to “hear” him when he told me he was sorry that I’ve gone through what I’ve gone through and he was sorry that I’ve been told it’s all in my head. He continued to tell me that he knows my pain is real and now needs me to allow myself to admit and accept that. 

A beautiful validation that I’ve longed for, but never expected, and now, will treasure forever. 

After an assessment and exam, he diagnosed me with PCOS, pelvic floor dysfunction, and suspected Endometriosis that I will need surgery to confirm and treat.

I prepared to be disappointed by the appointment and I buckled in for another long medical journey. I surely didn’t prepare for walking out with a diagnosis. Or three for that matter. 

So when I did, I didn’t know what to think or feel or how to process. Still don’t. 

I’ve accepted and learned to live with my other chronic illnesses. But now I feel like I’m starting from square one again. I feel vulnerable and wish I could take the can of worms I just opened and seal it back up and pretend it never happened. 

I’ve been very much in my head ever since. There’s a lot to unpack here. Everything from my fertility to questioning the realness of my own pain. I keep thinking what if the pain isn’t real, what if I’m blowing this out of proportion and being dramatic. Put simply, good old case of medical imposter syndrome. 

I’ve had years and years to learn and accept my other illnesses. I’ve had time to process it and learn to be an advocate for it. But DANG. I feel so weird in this new spot of unknown. 

There’s a lot of fear and confusion when you receive a new diagnosis. I keep on feeling like nothing has changed. Everything is the same now as it was before receiving these diagnoses. But it’s not. Everything is not the same. And I’ve been quite confused by how surprisingly hard I’ve taken it. I think because it runs deeper than just a few new words for me to learn about. It’s not the words that scare me, or even the pain. It’s what those words mean for me. For my family.

This last Mother’s Day was the first Mother’s Day where I struggled and I think these diagnoses are a big reason why. 

I’ve been off birth control for almost 2 years and ever since, it’s been a game of “are we trying right now or no”. Which I think more than anything has just been my way to feel like I had some control in the situation. Cause I mean if we’re not “trying” and we don’t get pregnant, it’s because we weren’t trying, not because we’re going to have any problems getting pregnant, right? 

That’s always been my biggest fear and these diagnoses have made me face that fear head-on. Ignorance really was bliss and man, I wish I could take the can of worms I just opened and seal it back up and pretend it never happened. But I can’t. I don’t get to ignore it anymore and I have no choice but to sit with what that might mean for us. 

And let me tell you, I’ve been a hot mess express trying to sort through my feelings, but even still, the Lord’s given me His supernatural peace. A peace because I know that my future is not held in the hands of my diagnoses. It is fully in the hands of the God who loves me and has a plan for me regardless of my Chronic illness resume 😅 

So I will trust Him with these new words I’ve been given. I will trust Him with our future. And I will allow myself the space to be human in the midst of all that trust.

Because this is hard. I don’t understand all the feelings or thoughts I have right now, but I do know that God does. I may be fearful for what’s to come, but He is not. 

I posted my thoughts on one of the support groups I joined. I asked whether anyone else went through these thoughts. I received so many validating and encouraging responses, but my favorite one was the shortest of them all. “Honey, the first stage of grief is denial” simple and so true. 

So if you’re in the same place, you are not alone. Your thoughts can feel convincing, but it’s not in your head. Your pain is real. You are not being dramatic. You are processing this just the way you are supposed to. Your reaction is “normal” and your feelings are valid.

And if anyone tries to belittle your situation or diagnosis, they’re just simply not your people. You deserve the time and grace to process your diagnosis the way you need to. 

Chronic illness is no joke and it’s got a way of sending you through the grief cycle. And right now, I just happen to be in the denial stage and that’s okay. Faith really is just learning to live in the tension of real-life-stuff and trusting Him anyways.