DISCLAIMER: The following post outlines the writer’s personal journey with ovarian cancer. It is not intended to act as medical advice. As always, please consult your doctor with any questions about your health.
September is Ovarian Cancer Awareness Month. In the last five years, I have rocked more teal and talked more about my reproductive organs than ever before. As a 27 year old, I wouldn’t have been able to tell you the signs and symptoms of ovarian cancer. I would not have known why there were teal ribbons tied on lampposts and benches in Michigan each September.
At 28, my husband and I had been married for a few years. We decided we were ready to start trying to grow our family. I think as most people do, I expected to get pregnant pretty quickly. But, months passed and I continued to have negative pregnancy tests. I was confused by some of the unusual things happening to my body that aligned with being pregnant. I had to pee constantly, experienced some constipation, had bloating in my abdomen/pelvis, and I couldn’t eat as much as usual during a meal.
These symptoms developed over a few months, in addition to an occurrence of extreme pain during sex and abnormally long periods.
My OB initially suggested that some of the symptoms, like pain with sex and bleeding, could be attributed to my body adjusting to going off of birth control. So, we continued to try to conceive. A couple of months later, my periods still had not found any sort of rhythm. And, I continued having weird symptoms. I scheduled another visit to my OB where I got an ultrasound to check that there were no obvious reasons why I wasn’t getting pregnant.
My ultrasound showed a decent sized “cyst”. It was suggested that I had PCOS and to monitor any pelvic pain that could be a sign of ovarian torsion (when your ovary or mass on your ovary cause the Fallopian tube to twist due to the weight of it). Not 48 hours later was I in the ER in the most pain I had ever been in with the assumption that I was now experiencing torsion. The “cyst” had grown and there was a recommendation to have it removed. As a precaution, my OB was going to refer me to a gynecological oncologist–just in case it was cancerous. At this time, I had been told it was extremely unlikely to be cancer, and that was my hope.
On the last day of May 2019, I woke up in recovery several hours after what should have been an hour-long surgery.
My mind raced and I concluded that they found cancer. I waited for confirmation from my doctor. Unfortunately, I was correct. At 28, I was diagnosed with stage 2b granulosa cell carcinoma–an extremely rare form of ovarian cancer.
For those of you unfamiliar with ovarian cancer, like I once was, you are probably wondering how it took several months to find out I had cancer. One of the main reasons is that still in 2024, there is no definitive test to check for ovarian cancer. Your pap smear handles cervical. A mammogram checks breast cancer. But ovarian cancer still requires a surgical biopsy to test. This leads to many people being diagnosed at later stages, and therefore having a lower survival rate.
So, what can you do?
I hope this post can empower you to be an advocate for your own body. And, encourage you to request the tests needed to start the process of checking for ovarian cancer. If you are noticing any symptoms for a period of two weeks, you should see your OB or a gynecological oncologist and ask for a pelvic exam, transvaginal ultrasound, and a CA-125 blood test. According to Johns Hopkins Medicine, the symptoms include:
- bloating
- changes in bowels
- feeling full quickly
- frequent urination
- menstrual changes or vaginal bleeding if already in menopause
- pain during sex
- pain in your back, pelvis, or abdomen
The three suggestions I gave will not give a clear “yes” or “no” to an ovarian cancer diagnosis. However, they are the best options at this time for initial investigation. The pelvic exam you get with your pap smear is a preventative check for enlarged ovaries, but a CA-125 and transvaginal ultrasound are not readily offered. If you have concerns about ovarian cancer, I encourage you to request those even though (as previously stated) we know that they are not foolproof. My CA-125 read at the upper end of the normal range and I still had ovarian cancer. Some subsets of ovarian cancer will display an elevated CA-125 as an indicator, but others will not.
What I want to leave you with is the reminder that you are the one person who knows your body best.
If something is off, keep asking questions, keep getting checked, and keep pushing for answers. We know that not all reproductive pain is honored in medical systems–especially for women and BIPOC folks–so please continue to listen to your body and speak up for yourself when you need to. It can feel taboo or uncomfortable to talk about your reproductive organs or sex life, but there is no shame in discussing the health of your body.
–Guest post submitted by Melissa Bradley
