Whenever something was wrong and I needed to see a doctor, my mom would be right by my side helping me answer questions and making sure my issue was addressed properly. Gradually she began attending my appointments less frequently, and eventually, my eighteenth birthday passed and she was not allowed to speak to any medical staff on my behalf. I did not think my mom’s absence would be a big deal, but it was a slap in the face once I realized how young women are treated without the pressure of another adult in the room. I knew I needed to learn how to advocate for myself, and with a literal growing problem on my hands, I had to learn fast.
Let’s rewind for a moment. In early high school, I went roller skating and ended up hitting the rink hard. Immediately I felt pain in my lower back, but I thought it would subside like any other bruise from falling typically does. However, three months later I still felt a bruise around my sacrum. I told my parents, and despite some concern on my end, we all brushed it off. Fast forward to the summer of 2020 which was years later. My sacral area had a lump on it that had been growing since the skating fall, and I finally decided it was time to show my mom again. The area was large enough that it affected how I wore pants, it ached, and I felt shooting nerve pain throughout. At this point, I had not connected the dots that this growth could potentially be due to the roller skating fall and further aggravated by a car accident I had been in. In full honesty, I thought that as a young woman with a small bottom this lump area just appeared bigger because of that (I know, I know…). Shocker-my parents were appalled by what I showed them. Within a few days, the long process of investigating what this lump was and what I could do about it began.
Warning: Be prepared for negligence, dismissive attitudes, and medical gaslighting.
First, I saw my family physician who basically told me he had no idea what this was, so he decided to order an MRI. To make a long story short, he ordered an MRI of my lumbar spine rather than my pelvis. The MRI technician had seen this order and tried to correct it three times with the doctor’s office who simply told her that it was intentional. So yes, my first MRI barely even captured this lump, and then they had the audacity to tell me that nothing was there. Somehow I was able to get a referral to a general surgeon. This is where the real fun starts. This doctor evaluated my lump, palpitated it with a lot of interest, and then started discussing my options. However, there were not really any options. Throughout our conversation, he could not decide if this was something he could even operate on as he could not even give me a diagnosis. I suggested that I thought it could be a lipoma, to which he told me that it did not fit what a lipoma looks like, but proceeded to then diagnose me with a lipoma. I am being serious. This surgeon also informed me that there was no possible way that I could be experiencing nerve pain from this growth, even though he did not know what it was.
After these appointments, I felt extremely defeated and did not pursue any more work-up for the time being. About four months later, I moved to a larger city with more medical resources and options. My new primary physician saw me for the lump issue and immediately wanted to refer me to surgery to be able to get some answers. To prepare for this, I had to get another MRI (this time it was correct). The results were not alarming, so I was sent on to have a surgery consultation. I was feeling very optimistic about the situation at this point. I really thought that I was going to be free of the lump. However, this surgeon decided that he would not feel comfortable performing surgery on me as he did not know for sure what the lump was, and he feared he would remove too much tissue and that my back would essentially have a concave appearance. While I understood his hesitation and decision, it obliterated my hope for possible surgery.
I had completely given up, and it was not until I saw my family doctor again for another issue that he mentioned in passing that he wanted me to see another surgeon. He did not want to give up on me and my situation, but he needed me to be on board. So, I let him refer me to another surgeon, and this one was completely out of my normal network. I felt a lot of anxiety about this appointment because I was imagining all of the ways I could be let down again and feel like my time and money were wasted. When the surgeon walked into the consultation room and felt my lump, I was genuinely surprised when he told me that he thought he knew exactly what it was and that it would be a simple procedure. I thought I was dreaming because there was no way those words came out of his mouth. He explained to me what he thought it was, which is irrelevant because it ended up being something slightly different, but we will get to that. I made my surgery appointment after he left the room, and then it was just a waiting game.
My surgery went as well as one could hope for. They successfully removed my lump which ended up being a big unencapsulated lipoma. A lipoma is a fatty tumor that is benign. Typically, these grow in contained sac-like structures which you have seen if you have ever watched Dr. Pimple Popper. Mine was unencapsulated, meaning that it was not contained and spread out with ends that reached like fingers. This made removal more difficult as they had to search for it and make sure all pieces were cleaned out to reduce the chances of it regrowing. Although we never confidently determined the cause of my lipoma, our best bet is on the roller skating fall. Recovery was long and painful given the location of the surgery, but it was worth every obstacle. Today, April 6th, marks one year since I had my operation, and I am still lipoma free!
I now live with a horizontal scar along my lower back. I get asked a lot by other people how I can forget about its presence and feel confident. The truth is, I do not care at all how it looks. It was never about cosmetics for me. When you are in pain for a long time and it seems like nobody cares enough to help you, the simplicity of no longer having the issue is the only thing that matters. My current primary doctor and the surgeon that removed my lipoma were lifesavers for me, but I would have never have arrived at the point of being in their offices if I did not advocate for myself. The first doctors would tell me that my lump was not a big deal, I could not possibly be in pain, and that it was probably just a little extra fat. There were points that I had to be outright mean because nobody was listening to me. Every time I felt utterly hopeless about the situation, I reminded myself that my health mattered. Then I would pick up the phone and make more calls.
I know my story is frustrating to read, but I hope that it inspires you to not give up and shines a light on the gaslighting done by medical professionals to a lot of young women. You know your body best, and do not ever let a physician tell you otherwise.