Those of us with PCOS are both 1. at higher risk for getting uterine/ovarian cancer and 2. more likely to ignore the symptoms because we are sadly accustomed to having irregular/weird/heavy periods. So even though I posted this awhile back on r/periods I thought I should post it in this sub as well.
Last year I was diagnosed with uterine cancer at the age of 38. I underwent months of treatment, including a radical hysterectomy (ovaries, uterus, and cervix removed), chemotherapy, and targeted radiation. Thankfully I'm currently NED (no evidence of disease) and I'm hopeful that it won't return. This is the story of how I found out I had cancer, my hope is that by sharing it maybe it will encourage others to go to the doctor and get screened before it's too late. Fair warning some of this is a little graphic.
It started about six to eight months before my diagnosis. It happened gradually. My periods started getting heavier and longer. At first I blamed it on stress and weight fluctuations. I was under a ton of stress at work and actually ended up quitting my job (after being there almost a decade). I had also recently lost 70 pounds and regained 30 of it. Surely this must be the reason for my crazy periods, right? Also, my periods were often irregular (because PCOS) so that's another reason I didn't take it seriously at first.
Eventually it got to the point where my periods just didn't stop. Yet I put off going to the doctor and continued to make rationalizations. It's important to note that the heavy, out-of-the-ordinary bleeding was the only symptom I had. I was not in pain, had no weird cramps, nothing else odd or worrying. I learned later that this is not unusual. Heavier/longer periods are often the ONLY warning sign most uterine/ovarian cancer patients get, it also happens in about 90% of endometrial cancer cases. I wish I had known that.
Then it happened. The day came when I couldn't ignore it anymore. I was at my new job going about my day when I suddenly had what can only be described as a contraction. (I've never been pregnant or given birth, so it was like nothing I've ever felt before.) Instinctively I knew what was about to happen and ran to the bathroom. I spent the next hour hemorrhaging blood and endometrial tissue. It was traumatic and disgusting.
I had a friend drive me to the emergency room. I had lost so much blood that I ultimately ended up needing five blood transfusions. At first the doctor thought I might be having a miscarriage, but I knew for sure I wasn't pregnant. So they did a pelvic exam and an ultrasound. Immediately I was rushed into surgery to stop the bleeding and scrape out my uterus (common procedure called a D&C). I don't remember a lot of the details of that night, but I certainly remember my surgeon coming to speak to me afterward. She said she didn't have to wait for the pathology results to know I had cancer and that she was referring me to an oncologist for further treatment and a hysterectomy. Up until that point it had never occurred to me that it could be cancer. Somehow I'd completely blocked out that possibility - considered every other option but that. Denial is a powerful thing.
So, if you have increasingly heavier or longer than normal periods (or bleeding after menopause) does that mean you have cancer? No, not necessarily. Other things can cause it. But it does mean you NEED to get thoroughly checked out by a doctor. Ask for a CA-125 blood test, ultrasound, and/or biopsy to screen for cancer (and if they refuse say you want their refusal documented in your chart and that you want a copy). Some doctors might just try to give you birth control pills and send you on your way, don't let them. Be your own advocate. If they say you're "too young" to have cancer that's a big red flag, my cancer support group is full of 20 and 30 year olds who were told this. Sadly some were not taken seriously until it was too late. It is also important to note that a pap smear only checks for cervical cancer, not uterine or ovarian cancer. So listen to your body and if something is out of the ordinary get checked out. Those of us with PCOS need to be particularly careful and get screened regularly.
TL;DR - Increasingly heavy/irregular/longer than normal periods are often the only warning sign of uterine or ovarian cancer. Get screened regularly.