All the testing that's led me here: my own advocate
Updated: Nov 12, 2019
My journey with chronic pain began a decade ago. At just twenty-five years old, 40% of my life has revolved around cramping, aching, doubled over pains that just won't go away.
If you've read along with my previous Invisible Illness posts, you've been with me through visits to pediatricians, general physicians, OB-GYNs, general surgeons, and even a gastroenterologist.
After years of testing - everything from X-rays to a colonoscopy - the only thing I was prescribed was rest. All that resting did was make me sick and tired of being sick and tired.
In November 2018, I scheduled a follow-up appointment with my physician and presented him with a list of all of my consistent symptoms:
Pain in the lower right quadrant of my abdomen, ranging from sharp and sudden to dull and achey
Pain in my lower back, at times inhibiting my ability to sit or stand
Agitation when walking, making 'hinging' motions, and some exercise
Cyclic bloating, typically appearing at the end of the month
Nausea and stomach aches, cramping, occasional spotting
I went into that appointment fully armed and prepared to figure this out. I had my dates, timelines, and symptoms all written up and ready to go.
And... I was told to visit my OB-GYN. That was it. Another appointment.
Disappointed but not disheartened, off I went to yet another doctor. Same list, same symptoms, same complaints.
My OB-GYN, in some attempt to relate my pains to a hormonal issue, doubled up my birth control and put me on a hormonal birth control pill in addition to my Mirena IUD.
Ya know what I would NOT recommend? Pumping your body full of hormones. I'd probably never recommend this, but especially not after your body has adjusted to life on a non-hormonal birth control option. My Mirena and I get along just fine - we had a lovely little relationship going with no drama or fuss. Then, a hormonal birth control pill got added to the mix and my body was all drama, all the time.
Suddenly, I was constantly nauseous to a whole new degree. I lost my appetite, gained constant swelling to my stomach and boobs, and was on a whole roller coaster of emotions. Sad and teary one minute, mad and frustrated the next.
Now all of my typical symptoms had some new friends to party with! I'd have pain in my lower right abdomen while also feeling like I could throw up my meals at any given moment. I nearly cried one day after tightening my bra straps a smidge too much. I either didn't eat at all or I couldn't stop eating.
All of these new symptoms but no reduction in pain.
After trying hormonal additives and treatments for three months, I couldn't handle the roller coaster I was on - so I hopped right off that ride and right back into a doctor's office.
It was, finally, at this point that my doctor and OB-GYN agreed (ok, I badgered them into agreeing) that it was time for some additional imaging: I was getting an MRI!
I was THRILLED with this development. I was so convinced that if people could just see the details of my insides, everything would be solved. I was giddy walking into my local hospital the morning of my MRI. My doctor ordered two images: pelvic and abdominal.
Full disclosure: I love my OB and my physician. They are great guys. But, from the start of my MRI I didn't feel supported by them as medical professionals. It felt as though they were simply trying to appease me instead of genuinely trying to figure out the root cause of my pains.
Nonetheless, I wasn't going to let my doctor's lack of interest rain on my parade.
Weeks later, there I was - sitting in my hospital gown listening to the pre-imaging prep and signing off on my waivers. I felt high off the excitement of it all. This was my day! We were going to see the problem on this wonderful little image and then my years of pain would be solved! Wooo!
I'm not typically a cynic - but even I should have known that would be too good to be true. When I walked back to the radiologist, he peppered me with questions and an obvious dose of skepticism.
"Why are we doing two images? Why these areas? What should I see? Why are we doing this when you've already had ultrasounds done of your ovaries? What is the point of this?"
I was near tears. My excitement deflated more quickly than a balloon.
I politely told the same old tale to yet another medical professional, going over my pains symptom by symptom. Telling him that this test could be the thing that would finally solve my pains and issues.
Instead of listening to the patient who has lived with these pains for years, my radiologist called my doctor.
Now, I'm all for due process and retracing your steps. I appreciate the attempt to do a job and do it correctly. But, the radiologist wouldn't allow me in the room during the conversation with my doctor. And, suddenly, two image orders became one.
The radiologist refused to do a complete pelvic MRI, stating that he could see "just as much" with the abdominal imaging and that, either way, he didn't see this as a valuable addition to my medical record.
I laid in that small, clanky tube for an hour - fuming with rage while listening to Beyoncé from my hospital issued headphones.
And, to no one's surprise, my MRI came back inconclusive. (I recently found out this entire MRI was botched and provided inadequate imaging... but more on that in another post!)
At this point, I was desperate and quite devastated. The only real difference between this appointment and any of my others was the large bill that came with my MRI services. While my other appointments had been disappointing, at least they didn't come with a bill that was in the high hundreds.
Let me paint this picture for you (warning: it's a sad little scene painted in hues of gray.)
It's now mid-2019. None of pains have disappeared. My symptoms are now more present than ever and causing additional issues such as bowel pain and a constant ache in my lower back. I'm on several payment plans to pay off an MRI that was inconclusive. And, I'm pissed.
What's a lady to do? Well, I went right into my OB-GYN's office and demanded a laparoscopic procedure. I was polite but stern - telling him that I didn't feel much support, that none of my doctor's truly followed up with me, that I simply refused to be in pain any more so come on, doc, cut me open!!
And, he agreed to. He hesitantly said that, sure, maybe I had endometriosis and that if I did he would just cauterize it as we went.
When I left this appointment, I should have been on Cloud 9. But, a woman scorned is a woman who doesn't forget. I still felt hesitant and unsure. I didn't feel like my doctor was confident this was the right move. Hell, I didn't even feel like my doctor fully believed the extent of my pains.
Cue Dr. Google. (And Dr. Zaranec - my sister is a physical therapist who took it upon herself to do some research and polling amongst her peers on what my next steps should be.)
I need to give full credit where credit is due: I would not be in a good health space right now if it wasn't for the work of my mom and my sister.
My mom was Dr. Google herself - spending hours (literally...) looking up articles, videos, podcasts, and more about pelvic pain, chronic pain, and endometriosis. That is how I found Dr. King and finally got a health plan in place. My sister took the time to chat with her colleagues and set up phone conferences for me to chat with other professionals and get their insights and opinions on treatment options. She was diligent and thoughtful and connected me with a woman who really opened my eyes to the failures I've faced in the medical system.
I was in such a dark place mentally and physically that the thought of more research, more conversations, and more tests was just too much to bear. My mom and sister picked up that work for me and were two really crucial pieces to this puzzle of mine.
And, now, we get to splash some hues of bright yellow on that sad little gray portrait I was painting because, I FINALLY am in a place where all of my testing has paid off!
I met with Dr. Cara King on November 1, 2019. In the ten days that have followed that appointment, I received more answers, health plans, and optimism than I have received in 5+ years of doctors.
I'll fill you in on my health plan in Wednesday's post, but I'm so glad to be ending this blog on a high note. For years, I have tried so hard to explain my Invisible Illness to someone who gets it. I have friends and family that hear me out, but (luckily!!) they are not truly in the position to understand.
It took me taking control of my own health for me to get the answers I deserve. I had to push... and push... and push some more to get my doctor's to even agree to a basic blood panel at times - let alone put me in an imaging machine. I had to have a team of people rooting for me (heeey, gal pals + Morgan + Mom + Family!!) to get me here.
There's still going to be so many days where my portrait is looking gray. But, knowing that some yellow will be added to my palette makes the gray days a little more doable.
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 shine some light on this series as I tell you about my latest developments and my wonderful doctor who is changing my life.
Read the entire series: