I Have Endometriosis. For Real This Time.

This week I saw an endometriosis excision surgeon for the first time. This appointment was a long time in the making for a lot of complicated, emotional reasons. I have been having increasingly debilitating and frustrating symptoms over the past two years (since IVF), including pain, fatigue and inflammation. I am finally in a place where I can kind-of, sort-of face the next step. Surgery.

It’s been really easy to ignore surgery. To ignore the problem. To ignore endo. After the shit show of infertility and IVF, I really couldn’t handle facing another medical drama. I’m still healing from that experience and I still feel triggers that are very intense. I really believe I have medical PTSD from everything that happened. Ignoring it has been my coping mechanism of choice, and it’s been pretty damn effective. Except for the daily pain, but, you know,

Thankfully, I’ve made some baby steps towards accepting that I have this disease and that I can seek help to address it. I’m back in therapy, and we’ve been working on making this a priority. I sought out an endo support group (IRL), and went to a meeting. I’ve connected with other #endosisters online. As always hearing other peoples stories has taught me so much and helped me take these steps.

I’ve learned that I’m one of many women who has endo, but is terrified that it’s not really real. That it’s all in her head, like the doctors have told us for so many years. My first symptoms presented themselves with my first menses, at age 11. Today I’m 33 and I am just now seeing a specialist for my disease. I am just now having it medically confirmed that I have endometriosis. In the meantime I have seen dozens of doctors for dozens of endo symptoms, and not one of them has really helped me. Many have dismissed me, misdiagnosed me, or made me feel crazy. I mean, that’s fucked up. But that’s for another post.

Before making this appointment I talked to my husband and my therapist and my tweeps about my fear that the doctor would laugh at me and tell me there’s nothing wrong and that I don’t need surgery. I learned that I’m not the only one to have had that fear. Thankfully, though, she didn’t. Not even close. She listened to my story. Walked through my medical history. Asked questions and passed tissues across the desk. Then, after a four minute physical exam, she said “You definitely have endo. I can feel it.”

Life. Effing. Changing.

Since that moment I’ve felt waves of numbness, anger, and relief. I’m am so overwhelmed by everything that the doctor told me, all of the surgery prep, and just the fact that there will be surgery. (I’m a “surg-in.” A surgery virgin.) One of my stress responses has been just shutting down. I stared out the window a lot yesterday, and hid in my bedroom.

I am angry in a way I can’t really describe over having this diagnosis so late in life. After this disease has cause so much destruction in my life. It’s perfectly devastating to think about. This month is the five year anniversary of when we started to TTC. What if I’d been referred to an endo specialist then? What if I’d had the surgery then and had proper medical treatment for fertility, instead of the dx of “unexplained infertility”? What if my doctors didn’t say “everything looks pretty normal. You’re young. Your cycles are regular.” What if I hadn’t gone through all of that hell? What the fucking if.

And, finally, I am relieved to have a dx. To have a doctor. To have validation. And to have a plan. Even if the plan kinda makes me want to puke right now.

This is going to be a long road. There is no cure for endometriosis. But I feel a tiny sliver of hope among all the panic. I’ll take it.