Being Dismissed By Doctors

Although most of us in the sick community might not have medical degrees, I still believe we know a lot about what’s going on in our bodies. But what happens when we share things with our doctors and it’s not taken seriously? How do we even continue to see those doctors that aren’t listening, but technically are skilled physicians? This subject has created so much anxiety for me and I’m sure I’m not alone. The issue isn't about whether we end up right or wrong. It's about not being taken seriously and making us feel that our opinions don’t matter. I know for me, it makes me feel as if my health is out of my control.

What it means to be ignored or dismissed

I’ve had many gut feelings and of course, not all have been correct. As sick people, we do a lot of Google searches and connecting with the community to ask questions. Sometimes, this can help tremendously and other times, we still end up at a dead-end. But when we walk into a doctors office with information we’ve learned from these sources and our doctors dismiss us, we become scared to share what we think. I’ve been told so many times “Oh, that isn’t what’s causing the pain” or “Endometriosis can’t do that”. Then they send me to a different doctor, which can waste our time, just for them to get zero answers.

My experience

A long time ago, I began experiencing kidney pain, which I had never had before. It’s excruciating to say the least, especially when it’s accompanied with pelvic pain. I was nearly blacking out and going to the ER weekly. All my tests showed up negative. There were no kidney stones and zero results from scans. Because of this, it seemed my kidneys were totally fine. I was beyond desperate for answers. And of course, my endo surgeon dismissed my idea that it was connected to my endo issues.

At this point, giving up wasn't an option. I kept telling him it was worth exploring. I explained how my kidneys hurt every time I had pelvic pain and my medical history showed no urinary issues. He made me see a urologist, though I had already seen one in the past. It took months of waiting to get in. It felt like prolonged suffering just because I wasn’t being heard. Then, while looking through old records, I found out that my previous surgery years before endo was found on my ureters. Ureters are tubes made of muscle that connects your kidneys to your bladder. I reached out only to learn other women had also experienced what I was going through. Some even ended up with long term kidney issues because of delayed treatment.

Speaking up

I finally had surgery after 4 months of bedridden pain. He found scar tissue from the previous surgery completely covering my ureters. Thanks to this surgery, I am kidney-pain-free. There haven't been any issues since then. So as I said, it isn’t just about being right, although in this specific experience, I was. It’s about the validation we all deserve when walking into a doctors office. It's about our theories being taken seriously when we have the evidence being presented to them. I admire the strength in us to be persistent when confronting our surgeons and doctors. That being said, we shouldn’t be dismissed when we are the ones experiencing the pain.