All the testing that’s led me here: the beginning
Updated: Nov 7, 2019
If you read Are you there, God? It’s Me - Erin’s Uterus, then my secret is out… I have a troubled pelvic system.
If you didn’t already read that post, well, now you know my secret anyway, but you should still be a gem and go read that one so we can all be on the same page.
This isn’t one of those “long story short” situations. It’s a long story full of many different paths - most filled with potholes and detours and endless construction.
But, here’s what I know so far: I (more than likely) have endometriosis that lives within the right side of my pelvis. Preliminary tests lead my current doctor to believe that I’ve had the disease for years and it has progressed into an array of muscle disorders and even a tilted uterus (sexy, I know… but more on that later.) The main cause of my day-to-day pain is a fascial knot caused by years of wear and tear on my muscles. As a result of constant pain cycles, my body literally started to get tied up in knots. My pain is further agitated by constant muscle spasms and a consistent quiver in my levator ani and obtuator internus muscles.
Wow - wasn’t that fun to read! In additional parts of this series, I will dive deeper into each of my lovely pelvic issues, but to understand it all, you need to know where I’ve been to get to a diagnosis point.
The real trouble started in 2009 when fifteen year old me got her first visit from Aunt Flow.
I was never nervous about getting my period. I was excited for the task - if only to do yet another thing that my big sister had already accomplished. My mom and sister were open with me about periods and the small inconveniences that came along with it and I was more than ready to bloom into womanhood - tampons and all.
From the talks of it, getting your period seemed like a walk in the park - or, for metaphor sake, let’s say a rose garden. My friends and family strolled leisurely through this new life adventure.
When my period came it was as if someone saw me approaching the rose garden, recruited a football team to follow me there, and then paid the team to tackle me at full speed until I had been stabbed and bloodied by every darn thorn in the place.
I was in so much pain I was missing school. Heck, I barely got up to join in on family dinners. I remember being able to see my stomach muscles quivering one morning as my mom was in the next room dialing the school’s attendance line once again.
After a few of my first cycles, my mom decided that I’d been trampled on enough and that was time to see if we could somehow make my periods switch from tackling practice to… well, at least to a tackling practice that I was allowed to wear pads and a helmet to.
So, off to the doctor we went! My pediatrician didn’t seem too alarmed, but prescribed birth control pills to see if that would lessen my pain.
Now, some of my details get blurry here because I’m thinking back to a decade ago. But, from what I do remember - the birth control did seem to help. I never quite had the walk through the rose garden that I was expecting, but I was able to at least get back into school and have a social life during my monthly periods.
Throughout the month, though, I had other issues. Stomach aches, nausea, digestive issues, and more. No two symptoms seemed to line up and, honestly, no one seemed overly worried about them. So on I went - adjusting birth control here and there, feeling nauseous nearly all the time, but overall living a normal teenage life.
And then came 2015. By that point, my body seemed to be in a full attack against me. I could barely seem to keep any food down. My cramping was back and it always outlived any bleeding I had. I would get so aggressively sick that I was, very often, afraid to leave my house for too long.
So, more doctors.
My pediatrician, again, didn’t seem overly worried but she did recommend I see a gastroenterologist to further chat about my issues. I’ll spare you some of the details here, but I ended up being the youngest person (by decades) in my doctor’s waiting room as I anxiously waited for a colonoscopy.
At that time, everyone was worried about Crohn's Disease or Irritable Bowel Syndrome. No one had mentioned my periods or my uterus or anything besides… well, my booty. So, up the camera went and, in the end, all was well. No digestive issues were discovered. To play it safe, I was told to do an elimination diet that excluded dairy products - but no doctors deemed follow up necessary.
I went back to college and was living the (semi) dream life, dealing with pain and sickness as it came and not thinking much of it if it wasn’t actively there.
Just two months into the year, I was sleeping after a long day of classes when I was jolted awake by what felt like someone strumming guitar strings on my appendix. I could barely move and felt the entire right side of my abdomen quivering violently. After waking my confused roommate and calling my, even more confused, parents - off to the ER we went. I was fully prepared to be told I had appendicitis. My 2 a.m. trip, though, ended in even more frustration when a CT scan revealed no issues in or around my appendix area. The doctors basically laughed at me, called me a silly college girl, said maybe I pulled a muscle and sent me on my way.
Which was all fine and dandy until, a few weeks later, more pain. Walking home from class I nearly fell over, pain taking over my entire abdomen. This time around, I made an emergency appointment with my OB-GYN. After a round of pelvic ultrasounds, there was some fluid seen in my cervix. We chalked it up to a cyst that ruptured. I was told that I had experienced the worst of the pain and to just go home and rest.
I rested, told myself I was being crazy, went to class and did all the things a college girl should do. Until I was sitting at work and felt like someone was consistently grabbing at my muscles and punching them with the force of a pro fighter. Piling in the car, my roommate and I decided visiting an urgent care would be the best course of action.
I could barely sit up on the exam table - it hurt to walk, to sit and stand, and generally, to breathe. The doctor did some blood work and said that most of my levels were fine, maybe I had a kidney infection forming, to go home and drink Gatorade and rest.
Rest seemed to be the only thing any doctor actually wanted to prescribe to me.
After so much resting I could have become Sleeping Beauty herself, the pains were back.
This time so intense they nearly took my breath away. I ended up leaving for my winter break early, staying on parent’s couch, going in and out of the doctors office - running everything from breathing tests to X-rays.
Again - only rest was prescribed.
The following year I was convinced that my birth control dosage was doing my body more harm than good so I switched from a hormonal birth control pill to a Mirena IUD. I was thrilled about the idea of no more bleeding and thought that if I could eliminate bleeding cycles I would also eliminate my pain.
At this point, I had been been to a pediatrician, a gastroenterologist, emergency room and urgent care doctors, a primary care physician, and an OB-GYN. I had complained about the same pains in the same areas since late 2014. No one had been able to relieve any of my pain and no one seemed to take it as seriously as I did.
In late 2017, I began to advocate for my health non-stop, talking about my pains any and every time I saw my doctor - even if it was for a well visit. My doctors and care team changed, but one thing stayed consistent: my determination to be pain free.
The Invisible Illness series will be published on Mondays and Wednesdays, detailing my journey with chronic pelvic pain and the various treatments I am prescribed. The next post of the series will detail my most recent experiences in the medical system and introduce you to the doctor who has me on my way to a recovery.
Read the entire series: