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The Anxiety of Suspecting an Endometriosis Diagnosis

About two years ago, I was diagnosed with fibromyalgia. The road leading to diagnosis was a long and stressful one to travel. Honestly, I think I dealt with many of the symptoms for years, always fearing I was a hypochondriac or just overly dramatic. So finally getting a diagnosis felt like a validation of all I had been through.

But the journey was still a difficult one. I had several different doctor’s appointments over the years checking for arthritis, trying to explain the phantom pain that came and went at will. I had doctor visits for the fatigue weighing me down during college, but could never be explained. I had gallbladder surgery and wondered why it took me such a ridiculously long time to get back on my feet. I fell and hurt my back, which caused quite a conundrum for my doctors. They did X-rays, MRI and CAT scans. Yet, they couldn’t explain why the pain was so severe or why it was still an issue months after my fall.

I finally got the diagnosis two years after the fall. It felt like the end of the journey, but little did I know it was just the beginning.

As I sit here writing, I think about the journey I’m just beginning. I’m waiting for yet another important doctor’s appointment. I’m expecting another chronic illness diagnosis, and I’m scared.

I was recently reading an article about a woman who had fibromyalgia and who was later diagnosed with endometriosis. She listed some of the symptoms that had been dismissed as part of the fibromyalgia until she finally got the diagnosis of endometriosis. As I read about her experiences, I found they sounded all too familiar.

So I did what I’ve been doing for the past several years, I started doing my own research. What are the symptoms of endometriosis? I’ve had a few friends with this diagnosis, and yet I was woefully unaware of the symptoms. Why hadn’t I looked this up years ago when a dear friend in college told me of her health struggles with this?

I found that article after article rang true. So many of the posts sounded like something I could have written. It made me wonder why I had never sought help before? And the truth is, it was because I was afraid.

I hate talking about such private issues, even with my OB-GYN doctor. And the truth is, I’ve always been afraid there was something wrong with me, but I was too scared to find out. I hoped maybe my symptoms were normal, and I got used to it.

Yet, here I am, waiting to discuss my symptoms with my doctor, thinking back over the years I suffered in silence. When I started birth control almost four years ago, I found myself wishing I had spoken up sooner. If only I had told a doctor about all the pain and terrible bleeding, maybe I would have tried this sooner and felt the relief this medicine provided. But I honestly had no idea birth control pills could be used as anything more than contraception. I wish I had spoken up sooner.

And still, I’m afraid to speak up. I’ve written my symptoms out, for fear that in the moment (in the stressful moment of sitting in the waiting room with my doctor), I’ll do what I’ve always done — I’ll gloss over the severity, I’ll downplay the pain, and I’ll try to act as normal as possible. I don’t want yet another doctor to treat me like a hypochondriac, which is why I’ve perfected my “I’m fine” smile.

What if she doesn’t listen? What if she hears my symptoms and they don’t sound severe enough for further investigation? What if she writes them off as just bad periods?

But maybe worse, I worry she will listen. Will that lead to thousands of dollars worth of more tests? I spent about two years of testing trying to get my fibromyalgia diagnosis, am I really prepared for yet another round of tests? More blood work, more ultrasounds, and probably even surgery to find out more?

And what if she does diagnose me? What if I do have endometriosis? I will have yet another illness that can’t be cured; another label that can’t be fixed.

What I have to remember is regardless of a diagnosis, I will still be facing the same symptoms I’ve been fighting for years. And maybe, just maybe, if I speak out I might be able to get some help — and that is worth facing my fears.

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Thinkstock photo by: David de Lossi

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