I’ve spent most of my teenage years living with chronic, debilitating, pain that had not been able to be diagnosed. I have had countless ER visits, seen numerous specialists, and have had such a plethora of tests that it’s easier to list what I haven’t had done test wise than what I have. Recently after years of being undiagnosed, I was able to achieve a diagnosis for my chronic pain, but that was not without many counts of invalidation and disregarded advocacy from medical professionals.
Living with chronic illness that is unable to be diagnosed is an incredibly invalidating and exhausting experience. Initially there is generally great concern and care put into your treatment, when I first was in and out of the ER with stabbing pain in my stomach I was treated with respect, given medicine, and doctors carefully poured over the results of multiple tests, yet as time went on my treatment from doctors and nurses dramatically changed. Now, when needing to go to the ER I was accused of being drug seeking, told I was just constipated, anxious, that this was in my head. The pain would leave me to the point where I was passing out, unable to eat, unable to sleep, yet I was meant with countless providers telling me “I don’t know what’s wrong.” and “I’m sorry we can’t do anything for you.” My pain was completely unmanageable yet I was left with no means of managing it. Waking up meant expecting to be at a high level of pain for the rest of my day, good days were 5 out of 10, bad days were 10 out of 10. My good days were becoming less and less.
It wasn’t until I had been put through my second round of testing with a gastroenterologist that there was any mention that this could be something wrong with my uterus. As a uterus owner, I have oftentimes found it hard to be taken seriously when it comes to my pain, especially by male doctors, so when the diagnosis of Endometriosis was mentioned by a cisgendered female nurse practitioner I was surprised that it had never been mentioned before. I scheduled an appointment with my gynecologist, who then scheduled an appointment for me to be surgically diagnosed, as Endometriosis can only be diagnosed through surgery since the tissue growth outside of the uterus is not able to show up on an ultrasound or other imaging process.
In April of 2018, four years after the onset of my pain I was diagnosed with stage one Endometriosis, and was fortunate that my lining growth had not spread onto any of my internal organs. Endometriosis is a horrible, and unfortunately not entirely uncommon, effecting 1 in 10 uterus owning individuals, though on average most wait up to seven and a half years before being diagnosed. Endometriosis is when the uterine lining (what grows every month to prepare for a baby, and then sheds during a period) begins to grow outside of the uterus and around the body, if left untreated it can cause infertility or can cement organs together inside the body. Common symptoms are dramatic bloating, severe chronic pain, and heavy, painful periods. For most, Endometriosis is an invisible illness, just like chronic pain, and just like all invisible illnesses, you wouldn’t know the amount of pain I go through on a daily basis.
Me at the hospital for pain Me at the same level of pain at work
It can be hard to be taken seriously as someone experiencing chronic health issues that are challenging to be diagnosed, I used to envy people with horrible diagnosis’ just because they knew what was wrong with them, but eventually I found out what the cause of (some) of my health issues was too. What’s important is you remember it’s not all in your head, constantly advocate, do your own research, and do not be afraid to ask for a second opinion, because some doctors just don’t know how to help, but that doesn’t mean that ALL doctors don’t know how to help. Eventually there will be someone who figures out what’s going on and can provide you with a diagnosis, and subsequently a way to learn how to manage your symptoms. It’s not all in your head, it wasn’t just in mine.