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Coping With the Endless Pain of Endometriosis

Today was one of those days where I woke up, my eyes wide, and jumped up from my bed because of the stabbing pain coming from my stomach. Endometriosis is something I have been at war with for the past year and a half and tried to push away. It’s not just endo for me though, I also live with fibromyalgia. Most likely, they both stem from my autoimmune disease, Hashimoto’s thyroiditis. I have learned to cope with fibromyalgia on a day to day basis. I’m even an advocate for the disease in Massachusetts, but endometriosis has been a new animal I’ve struggled dealing with. I am not sure if it’s the intimate nature of the disease that makes it hard to talk about or the fear I still have of it.

This week is the one-year anniversary of my first surgery to diagnose and remove the endometriosis tissue. I was so scared – I don’t think I’ve ever been that scared in my life. I’d never been under the knife before so I had no idea what to expect or what they’d find. I couldn’t tell myself what my future was going to be when I came out of it. That’s scary. When I woke up from surgery, I was immediately relieved for the first time in a long time. I was finally validated that my pain was real with the official diagnosis of endometriosis, which is a big deal for a person with multiple invisible chronic illnesses. Immediately after, I dealt with the aftermath of my surgery and all of the pain that comes with it.

woman after endometriosis surgery
Coming out of my first endometriosis surgery in 2016

I remember seeing my scars and stitches for the first time and my breathing increased. My throat closed and my heart threatened to beat right out of my chest. I had a panic attack. I would forever be marked with this and there was no pushing it away anymore. Simple tasks for the next two weeks were incredibly painful and difficult to do. I could barely sit up and down without excruciating pain and I felt sore all over. After I healed, there was this brief hopeful period that lasted less than a quarter of the year where I had virtually no stomach pain.

By the time the new year rolled around, I started seeing symptoms of the endo coming back. If the scar sent me into hyperventilation, imagine the dark shadowy almost forgotten echo of the endo pain tapping me lightly on the shoulder before grabbing me in a choke hold. I was terrified. I remember calling into the nurse’s line at the hospital twice a week with concerns that were easily brushed away. Every appointment I went to was a new pain medication or treatment plan and slowly my pain started to feel less and less validated, less real. I was back to making up an invisible illness that affected me in ways no one could see. I felt like I was back at square one and my body continued to fail me.

I had the big “quality of life” talk with my doctor about four months ago, which no 18-year-old should have to sit through. My options were to begin living with the pain, try chemotherapy to slow cell growth or get monthly shots that would give me menopausal symptoms that would flare my fibromyalgia up even more. So I chose the chemo. I’ve been taking it ever since then and the pain has its ups and downs. Tonight is for sure a down. As I stab the keys of my computer so goes the pain stabbing its way back into my stomach. When I feel the aching, I look in the mirror and see my thinning hair from the medication. I see an 18-year-old who should be halfway through her first semester of college, worrying about midterms and finding clubs to join. Instead, the pain withers my features and my hair continues to thin out.

I find it hard to be strong in situations like this when I’m alone and all I want to do is feel sorry for myself, because I know how hard I fight every day. I find it hard to be strong in situations like this when all I feel is defeated. I find it hard to be strong when I can’t even see my path anymore. Four years ago, I was on my knees, hopeless about my fibromyalgia. I found strength in helping others. Writing always helped me clear my head and cope in seemingly healthy ways. Tonight I wanted to write about my experience with endometriosis and how hard it’s been, because as isolating as this pain is, I know I’m not alone. There are others out there who have it even worse than me, going through the same or similar things. It’s a scary, life-altering and painful disease that can mentally and emotionally destroy a person outside of the explicit physical pain. Sometimes it can feel never-ending, but know you’re not alone. Look in the mirror and know you don’t have to fight this disease alone.

For the future, I am hoping to continue to cope with my journey of fighting endometriosis. I am currently studying art therapy which is showing me ways to cope, but will hopefully help me teach others how to cope with their pain someday too. Using art and different medias to cope, like writing, really is helpful and I would love to be able to reach out and meet others who are also struggling with chronic pain.

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