my endo story. part 2

Globally, it takes an average of 7-9 years to get an endometriosis diagnosis. (Frankel 2022).

Nothing had shown up on the ER ultrasound, so my doctor sent me to get an MRI. But endo doesn’t always show up on an MRI, which is one of the reasons it is so difficult to diagnose.

Luckily, I didn’t have that problem. It was everywhere…

They detected advanced, deep endometriosis on my uterus, the ligaments of my uterus, my right ovary and my intestines. My surgeon later described it like someone had poured a bottle of glue inside my body, the growing tissue causing my uterus, ovary and intestines to stick together. There were also two large lesions growing through muscle walls.

Well that fucking explains it.

I’ve been struggling since my diagnosis to explain what exactly it’s like to have endometriosis. There are so many symptoms beyond the pain. I’m exhausted all the time. If I push through too hard, I am in a ton of pain, throughout my entire body. It feels like the muscles of my back, hips and pelvis are in a vice, tightening and tightening. My guts are mess, the pain often worsening after I eat. And the bloating is absolutely unreal. Often called endo belly, I can’t predict when it’s going to happen, but all of sudden my stomach is so extended and tight, I look like I’m pregnant. I have had to buy bigger clothes and rely very heavily on elastic and leggings these days. And one giant sweater dress.

Endo happens in flare ups that seem to last at least a week. I have some good days, but mostly bad days. And I find myself so exhausted after making it through a week of work that I just spend the evenings and weekends on the couch, with my heating pad and heated blanket.

I have no social life, nothing I enjoy doing anymore (except watching true crime and snuggling with my dogs) and I have pushed my support system to the brink. I am very lucky to have the most supportive partner and we are both so hopeful that surgery will make a difference.