Michelle’s Story: How Endometriosis Led to a Bladder Cancer Diagnosis at 34

At 34, Michelle, a child life specialist with years of experience in pediatric oncology, was diagnosed with bladder cancer after a routine cystoscopy during endometriosis surgery revealed a bladder tumor. Michelle shares how she navigated her diagnosis, sought specialized care, and learned the importance of self-advocacy after an unexpected cancer discovery.

I like to refer to my story as a “complicated miracle.”

I’ve struggled with painful menstrual periods for most of my life. A lot of women with painful periods get gaslit and told what they’re feeling is normal. I met with a lot of gynecologists who told me just that, despite all my symptoms (this annoyed my mom to no end).

One of my symptoms was that before my period, my immune system would plummet, and between that and working in a pediatric setting, I started to catch GI viruses like clockwork.  In March of 2025, I had my third hormone-related virus in three months and had to cancel a vacation in Florida with family. Fed up, I self-referred to an advanced gynecologist in an attempt to finally get some answers. Within one visit, they told me I probably had endometriosis, a chronic disease that causes inflammation and scar tissue in the lining of the uterus (and beyond).

In July, to find and remove the endometriosis, I underwent laparoscopic endometriosis surgery. I had a pretty extreme hormone reaction to the procedure, which can happen. I’m normally blessed with good mental health, but after the operation, I was instantly depressed. In addition to that, I also experienced hot flashes and hair loss—it was like a fake chemical menopause.

As a part of my surgery, they did a cystoscopy to look for infiltrating endometriosis in my bladder. When I went in for my post-op visit, they were showing me pictures of my surgery and talking about pathology, and then, they threw in, “Yeah, and when we did your routine cystoscopy, we found a polyp in the lining of your bladder, so you should see a urologist.”

Because I wasn’t feeling like myself during this time, I didn’t process the fact that this was a very rare finding for a 34-year-old with no bladder symptoms. So, I wasn’t in a rush to do anything about it and didn’t get around to seeing a urologist until October—three months after the initial surgery.

When I went in, the urologist there told me that this polyp was likely nothing to be concerned about. They probably saw my demographic and decided I was at little to no risk. However, as someone who routinely works with cancer patients, I already knew that the likelihood of this being malignant was 50%. After all, it’s not common for benign things to just grow in your bladder.

An Unexpected Bladder Cancer Diagnosis at 34

In December, I went in to have my bladder procedure. The surgery itself was fine. In my mind, the other surgery was the one that was a big deal. Of course, I knew at the back of my mind that I was just a coin toss from malignancy, but no one was acting like this was the case.

My pathology results came back six days before Christmas. Since my urologist hadn’t called me yet, I read the results myself. The first words I saw were “malignant neoplasm.” As someone who works in oncology, I knew immediately what that meant, since it’s a result I was so used to seeing for my patients. My first thought was, “Oh, I have the cancer cancer.” I like to use humor as a coping mechanism.

I kept scrolling and saw that it said, “Low grade papillary urothelial carcinoma, non-invasive.” I knew that “low grade, non-invasive” were amazing words to read, despite how weird it felt to realize I got diagnosed, asymptomatically, with early-stage bladder cancer as a 34-year-old.

As I started to do more research on bladder cancer, one of the most reputable sources I found was BCAN. Their free resources, specifically their Bladder Cancer Basics guide, helped me learn a lot.

My doctor told me that the cancer probably wouldn’t grow back, but I should probably get a CT scan and cystoscopy in a couple of months. I could tell he was completely thrown off that his 34-year-old patient had a malignant diagnosis and didn’t know what to do with it. So, the only thing he knew to do was underscore the diagnosis in every possible way. I know he was trying to comfort me, but I work in healthcare—I would’ve preferred him to shoot straight.

Understanding Bladder Cancer Recurrence and Finding the Right Urologist

I started doing more research into bladder cancer in young people and learned that while it’s uncommon for my cancer to become more aggressive or turn muscle invasive, it is decently likely to grow back in someone my age. That’s not because the likelihood is higher for me, per se, but because I have more coin tosses left in my life as a now 35-year-old compared to a lot of the population of people with this type of cancer.

I asked my urologist again about the cancer growing back, and he just told me definitively, “There’s no likelihood of it coming back.” This just wasn’t true, so I decided to transition my care to Penn Medicine.

It feels deeply ironic as someone who works in pediatric oncology, but I am considered the youth of the bladder cancer demographic. Because of this, they were very willing to take me on, and I was connected with the amazingly talented Dr. Trinity J. Bivalacqua, who also happens to be in BCAN’s network. I told him to throw me in whatever research study he wanted so they could learn more about the tiny pool of under-40’s with bladder cancer.

My Advice for Others Like Me

This is where the “complicated miracle” part of my story comes in.

The doctors at Penn Medicine told me that this papillary urothelial tumor probably only showed up two years ago at the earliest. Since I’ve had endometriosis symptoms for the past 20 years, I could have opted to have endometriosis surgery many years ago. In that universe, I wouldn’t have known I had bladder cancer until it grew and became more aggressive. So, I think I’m very fortunate that this chain of events happened in the way it did. Feels like a bit of a God’s timing thing, and I wear a bracelet that says just that.

Today, I feel incredibly fortunate to be in the hands of a medical team that understands just how unusual my case is. My tumor was removed, and my first follow-up cystoscopy in March 2026 came back clear. Because my cancer was low-grade and non-invasive, I haven’t needed additional treatment beyond the resection. I’ll likely be having cystoscopies for the rest of my life though, and if the cancer comes back, we’ll talk about treatment then.

I’m grateful that my cancer was caught so early, but I’m also learning how to make peace with the fact that I really did have cancer. I don’t always feel like I fit into the experiences people typically associate with a cancer diagnosis, but that doesn’t make my experience any less real.

My biggest piece of advice is to advocate for yourself. If something feels abnormal, don’t let someone else convince you it’s nothing just because you don’t fit the typical picture of a patient. If possible, seek out a major medical center or an academic health system with specialists who understand your condition, and don’t be afraid to get a second opinion.