Making plans, and other jokes about life.

2020 has been a solid reminder, every single day, that life doesn’t go according to our plans. In fact, so I’ve heard, plans are some of God’s favorite jokes. But this post isn't about jokes. It's not about COVID, nor is it your typical "end of year" post about all of the things we have to be thankful for this year.

Nope. This post is about lady parts and disease. Proceed at your own risk.

Last December, I had surgery to explore and confirm endometriosis in my lower abdomen, which resulted in the removal of a fallopian tube (see previous posts here and here).  After the surgery, my doctor explained the state of my internal organs with the highly-descriptive “it’s a mess in there.” She was taken aback at the level of endometriosis she found, and she gave me the most incredible validation. She told me that, based on her surgical findings, she couldn’t believe I had lived with this disease for so long without seeking help.

I’ve been in medication-induced menopause for the past year and it has been glorious. I have felt better in menopause than in my entire adult and adolescent life combined! Unfortunately, the medication was not a long-term solution and after 12 months, I needed a new plan. I could try to manage my pain for the rest of my reproductive years, but what I really needed was another surgery; one my bad-ass incredible doctor did not feel she had the skills to perform. 

I was referred to a specialist at Stanford and a specialist in Eugene. A nurse in Eugene had the specialist review my file for a telehealth consultation and they determined that I should go straight to Stanford; do not pass go, do not collect $200. As they explained it, they felt it would be a waste of my time to meet with them when I clearly need the skills of the surgeon in Palo Alto. 

I met with Dr. Camran Nezhat in Palo Alto on December 4th for a surgical consultation. Dr. Nezhat is a world-renowned, ground-breaking surgeon. He is the guy. After my apprehension leading up to the appointment, it went much better than I ever imagined. Suffering from endometriosis and hormonal imbalances most of my life, I’ve felt like everything was in my head or “not that bad” for decades. I’ve doubted my pain over and over again because it is not tangible or visible. When Dr. Nezhat gave me an ultrasound and identified, within moments, that I already have multiple, visible growths returning on both ovaries, I started crying. He looked in my eyes and told me I am not crazy; my pain is real.

If I was someone who felt great all the time, I would probably be heartbroken to hear that I have a disease that needs another surgery. It’s obviously not what most people would want to hear. But when you live in a body that has never felt well, hearing that there is a legitimate cause for your pain feels...good(ish). There is a reason that I feel unwell; it is not in my head. I have an advanced disease. It’s not a life-threatening disease exactly, but it is life-altering. My endometriosis is in stage 4, which is rare, and needs immediate treatment before it causes further, irreversible damage to my organs.

The next steps are happening fairly quickly. My surgery is scheduled for January, and I have two additional CT scans in the next week to determine if I need multiple surgeries, or if one lengthy surgery will suffice. In addition to a hysterectomy and oophorectomy, Dr. Nezhat and a team of surgeons will be working on many of my internal organs and abdominal wall to remove scar tissue, adhesions, and active endometriosis. I will be on medical leave for a few months and I may need additional surgeries. Definitely not ideal as a teacher, especially in 2020, but, while the thought of leaving my students hurts my heart, my health and well-being require a personal investment and commitment right now. It may be a long road from here, but I’m starting on a path to a pain-free life.

My endometriosis experience is rare, but the disease is fairly common and does not get the attention or research it deserves. I have spent my entire life feeling so unwell that I considered it my default state of being. I only sought medical care because my symptoms were beginning to mimic uterine and ovarian cancer, and I was scared. I’d lived with the pain and general malaise for decades. I even argued with the first FNP I saw on this journey who gave me one look and told me I was unwell. I told her that this is my “normal” and I was okay with it. I didn't want to seek answers because I had been told so many times before that there wasn't a reason for me to feel unwell. Thankfully, this FNP didn't give up and pushed me to find more answers.

I’m not thrilled with the answers I’ve found. They give me validation, but they don’t give me peace. I can’t have another child. I’m having a hysterectomy at 36 years old. I may need a bowel resection and kidney surgery. I’m a few years into this process and I still feel angry and frustrated. Thanks to therapy I am able to cope in a healthier way, but I’m still grieving. I’m grieving my reproductive years that were stolen from me by a terrible disease. I am grieving the children I’ll never get to meet. And, despite my best efforts, I am still grieving the future I imagined for myself and my family. To end my pain I must also end my fertility, and I am left with an aching heart at the finality of what is to come.

2020 sucks; we can all agree on that. I look forward to December 2021, in hopes of writing a more positive post about the world and my personal health. But, until then, thanks for being on this journey with me ♥