Community Views: Ovarian Cancer Symptom Experiences

Following an ovarian cancer diagnosis, you might think about the symptoms you had leading up to that point. What your body was trying to communicate may suddenly be clear. We were curious about your pre-diagnosis symptoms, so we asked our Facebook community 2 questions:

"Did you experience any ovarian cancer symptoms, or did your diagnosis come as a shock?"

"What were your initial ovarian cancer symptoms?"

From bloating to fatigue to no symptoms at all, you had lots of experiences to share.

Bloating and stomach pain

The most common responses were pain and bloating in the stomach. Many of you felt uncomfortable in your gut, so you sought medical advice.

"I thought I had a hernia from shoveling snow."

"My belly got big, and I was in terrible pain."

"My belly kept bloating, and I had endometrial cancer too."

"I had bloating, bleeding during intercourse, and severe abdominal pain."

Heavy periods and cramps

Changes in your period were one warning sign that something was not right. You experienced increased bleeding and cramping during menstruation. For some of you, the bleeding did not stop at the typical end of your cycle.

"Long, heavy, messy, painful periods."

"I bled all month long."

"Severe cramps with heavy bleeding."

Fatigue

Increased levels of exhaustion and weariness were common responses. You could not identify a reason for the increased fatigue. Despite extra rest, you continued feeling tired.

"Being tired all the time."

"I just had the bloating and feeling tired."

Increased urination

Another symptom several of you shared was frequent bathroom trips. Urine output increased before your ovarian cancer diagnosis.

"Frequent urination – UTI symptoms with no bacteria."

"Having to pee A LOT."

Pregnancy

A couple of you were diagnosed while you were pregnant, and cancer compromised your ability to carry to term. The dual trauma of ovarian cancer diagnosis and miscarriage was emotionally painful.

"I was pregnant and miscarried mid-term. I was suspicious when doctors also said the ovarian cysts we had been monitoring looked unusually complex."

"Being pregnant. That's how they found it. I was vomiting. I grew a football-size tumor from one ovary to another. My body couldn’t support the fetus and tumor."

No symptoms

Some of you did not notice any symptoms, so your cancer diagnosis was a surprise. Doctors found your ovarian cancer by accident when testing for or treating a different condition.

"Nothing. Found it when I had gallbladder surgery."

"I didn't have any symptoms. I was totally shocked."

Dismissed by doctors

Many of you shared frustration with having your symptoms dismissed. Your doctors ignored or rejected your concerns. Often, doctors explained away symptoms without ordering tests. As a result, your diagnosis of ovarian cancer came much later than it should have.

"Had stomach pain, post-COVID. The doctor said it was all COVID-related symptoms. I had it for a month until I pushed for a CT scan."

"I had symptoms but didn't know they were related to ovarian cancer; doctors kept dismissing me. It was a total shock!"

"Had symptoms but misdiagnosed."

"Discovered after I had an X-ray for hip pain. I'd complained of fatigue, intestinal discomfort, diarrhea, fullness, and bloating for years. I got 'normal for a woman your age.' I was 65."

We appreciate everyone who shared their experiences with us. Many benefit from the collective wisdom in the community.