{TW: talk of death, talk of the pandemic, talk of medical abuse, heavy subject matter; be kind to your heart and refrain if triggering}
Partway through March, intense flank pain hit me—pain in the abdomen and back on the right or left side of the body—with fevers and non-stop vomiting. So unbearable were the symptoms on top of my typical chronic stuff, I headed to the emergency room to see what was causing it.
I need to worry about things like amyloidosis (kidney damage) potentially leading to the need for a transplant because of my conditions, namely Familial Mediterranean Fever (FMF). I also need to worry about peritonitis, which is an inflamed, infected abdominal wall, causing fluid to build up in the abdomen that could be life-threatening. I know not to take chances when I’m hit unexpectedly with these severe types of symptoms, and my only option is to go to the emergency department since it would take too long to see my GP or my specialist. Waiting in these situations can mean the difference between life or death.
Going anywhere during this pandemic for me is tricky. I’m severely immune-compromised, so I have to be very careful since I most likely will not survive; that’s just fact. So I have to psyche myself up to go to the Emergency Department (ED) during this pandemic since it’s a scary prospect. Even before the pandemic, I’d have to be careful not to catch any virus or infection.
Long story short, I had to go to the ED four days in a row. Four days of going to the ED, getting tested and told they still didn’t know what’s wrong, being sent back home for the night, to return first thing in the morning so they could continue their search. Add all the time up, and I was there for roughly 50 hours in total, which is exhausting for healthy people, and it’s torture for someone like me. Thankfully I got good pain medications while at the hospital, but nights at home were rough.
It turns out I have multiple ovarian and endometriotic cysts on my left side. These are caused by the conditions Poly-Cystic Ovarian Syndrome (PCOS) and endometriosis, respectively, that I’ve had since I hit puberty as a teen. I also have another smaller ovarian cyst on my right side and partial renal obstruction. It took them four days to figure this out.
Although not surprising, they weren’t able to do anything for me, so they sent me home with a referral to a walk-in Gynecologist, nothing to be done about the renal obstruction, though, which is alarming to me. Still, I was hopeful that I wouldn’t have to wait however long to see my usual gynecologist since it was a walk-in gynecologist. I called the next day to confirm some information and received the bad news that since COVID, the clinic had to close temporarily. So much for that.
So the next step is to call my GP then make an appointment with her, which luckily, she was able to squeeze me in the following week. She then sent the referral to my gynecologist since I hadn’t seen him in over a year. I received an appointment six weeks later. With the pain I was in, it felt like an eternity to wait that long. Thankfully, I have a pain specialist who works out of the same hospital where I went to the ED. When he noticed I was at the ED, he gave me a call to see what was up. He prescribed more potent pain medication to help me get through the next six weeks while waiting for the gynecologist. That’s the kind of doctor you want on your team, and I can’t tell you how grateful I am to have him on mine. It was a 3-year wait to see him, and it was worth it.
I saw my gynecologist, and he put me on a new medication that could take up to 2 months to take effect. I’m at the two-month mark now, and it’s only within the last two weeks that I’ve been slowly feeling some pain relief. Let’s hope this medication keeps working until I switch my IUD a year from now.
It’s scary to go to the ED as a person living with chronic/rare health conditions because we aren’t treated like other more healthy patients. It’s worrying about catching a bug while there potentially; it’s exhausting to be hypervigilant to keep myself safe. It’s discouraging to face the fact the docs likely won’t find out what’s wrong and may treat you disrespectfully. A significant contributor to the complex PTSD I live with is due to the considerable trauma at the ED I’ve experienced throughout my life. Anyone out there who “gets” this, my heart goes out to you. We’re not alone in this odyssey.