My Endometriosis Journey
This morning I came across a post I made two years ago today. It was my second anniversary of my first meeting with Dr Mackenzie. He is an amazing endometriosis surgeon and two years ago today was my first appointment with him.
It was the first appointment I had where I felt validated with scientific proof of my pain. No one else believed me and I began to think that I’d be better off without my left leg because it hurt so much. The pain came in right at a time I was physically stabilizing after severe health issues stemming from my EDS and intimate partner violence.
I’d been gaslighted for years by my family telling me that because I was sexually active I was being punished by God with my pain. I was told I brought it on myself. My then romantic partner at the time was afraid I was becoming a drug addict because my pain medications were no longer working. I’d panic every time my phone would buzz because it would be him checking in on me.
I’d already had one surgery and it failed. The medications and chemo to manage my symptoms and pain began to fail; more like never worked in the first place. My partner made me take emergency contraception every time we’d be in person and could have sex. It didn’t matter if it hurt me after or if I didn’t want to have sex because he thought I was cheating and that’s why my pain was worsening. Everyone thought I had a bad psyche and felt guilty when I actually felt my body shutting down.
The first surgery only aggravated the already damaged nerves and caused the disease to rapidly spread back and become more aggressive to treat. The medications triggered my other conditions and my health was deteriorating rapidly. I was in my PCPs office once a week begging for help and was referred to a general surgeon because we’d become convinced my pain had to be a surgical problem. General surgery couldn’t do anything because my scans were normal.
Dr Mackenzie took one look at me and said, “I’ve had kids like you come to me after being operated on at Children’s. I am going to do my best to help you and let me explain what’s going on.”
He sat me down and explained all my medical problems since childhood. The preteen abdominal pain and loss of appetite? Endometriosis on the bowels. Heavy menstrual cycles from the get go that would go through a pad and 3-4 layers of clothing? Endometriosis. The monthly hell as war raged in my body when I had my period because the lesions were causing bleeding and pain on multiple organs? Endometriosis. He listened and with his education I knew my intuition was on point. He scheduled me for surgery and then had to bump me up. I went from May 2020 to Jan 2020 for surgery.
The surgery was long and harder than anticipated. The lesions were all throughout my abdominal and pelvic cavities, nearly on every organ in those areas as well. My appendix wasn’t even spared and was visibly disturbed looking in my surgery. Turns out it was infiltrated with Endometriosis lesions. Other people have died from that. My intuition had been screaming that something was very very wrong. I had an impending sense of doom and I hoped the surgery would help with that. I woke up and I was surprised I was alive. In the days leading up to surgery I wasn’t sure I was going to make it or come out worse.
Here I am two years later and I have survivor's guilt that of the millions of endo sufferers I have finally had my luck break, and my surgery was successful.
