What Does It Feel Like to Have Ovarian Cancer? 4 Women Share Their Experiences
Key takeaways:
The first signs of ovarian cancer can be symptoms like abdominal bloating and pain.
Women who have experienced ovarian cancer say those symptoms are also easy to overlook.
Paying attention to what their bodies needed and finding the right care helped them deal with a tough diagnosis.
Cancer is a scary word. And, when facing a diagnosis like ovarian cancer, it can be easy to fall into a cycle of fear and worry.
Four women who were diagnosed with ovarian cancer told GoodRx about their initial concerns — and about how the disease can be treated and overcome. Here are their stories.
Menstrual discomfort got worse
Kimberly Shaw, who lives in Camden, New Jersey, was diagnosed with ovarian cancer in her early 30s. Her symptoms, which included abdominal pain and bloating, were relatively mild.
“I thought I was just experiencing normal menstrual discomfort,” she says. “But, as time went on, the pain and bloating got worse, and I started experiencing other symptoms like fatigue and weight loss.”
The continued discomfort caused Kimberly to go see her doctor. And, after a series of tests, her doctor gave her the diagnosis.
After Kimberly was diagnosed, she had a tumor, and the affected ovary and fallopian tube, removed. She then went through chemotherapy to treat the remaining cancer cells.
“The treatment was grueling,” she says. “The chemotherapy made me incredibly sick, and I had to spend a lot of time in the hospital. I felt physically drained and weak during treatment.”
Kimberly tried to rest as much as possible, and her doctor prescribed her pain medication. Once the pain was addressed, she says, she was able to focus on getting better. But it was emotional.
“I had a lot of support from my family and friends,” she says. “I also found comfort in my faith.”
Kimberly turned to support groups, including the Cancer Survivors Network, which is offered by the American Cancer Society. “I found it incredibly helpful to hear [other people’s] stories and to know that I wasn’t alone,” she says of the people she met in the support groups.
Her advice to other people who are battling cancer is to try to maintain a positive outlook.
“Try and stay positive and focus on getting better,” she says. “It’s not easy, but it’s important to keep hope and stay as strong as you can. Don’t be afraid to reach out for help, whether that be from loved ones, support groups, or professionals. And trust your doctors and the treatment plan they have for you.”
Abdominal pain was more serious than she thought
Annemarie Schumacher, a 54-year-old business owner in St. Louis, also had few symptoms leading up to her ovarian cancer diagnosis.
After experiencing a sudden onset of abdominal pain, Annemarie decided to go to an urgent care clinic. And she quickly found out that the cause of the pain was more serious than she thought.
She had abnormal blood work, and a CT scan revealed that she had a tumor. But sudden pain had been her only symptom.
“The doctors believe I had twisted my tumor. This is called torsion,” Annemarie says. “The torsion cut off the tumor’s blood supply and caused the acute pain.
“The workout I did a day prior was full of torso twists and abdominal work. I believe that workout saved my life.”
Annemarie had surgery and chemotherapy. And, on top of that, she dealt with plenty of emotional turmoil, such as when she lost her hair. So she began practicing acceptance.
“Early on, I realized I just had to accept what was in front of me and move forward,” she says. “After I learned what was going on, I spent a few days thinking, ‘Why me?’ But then I realized, ‘Why not me?’ Cancer doesn’t discriminate.”
Annemarie says learning to operate with your changing abilities is important when undergoing cancer.
“I tried to stay as active as possible, and that looked different at different stages of my journey,” she says. “But one of my favorite trainers has always said, ‘If you’re moving, you’re winning.’ So I took that advice to heart.”
Annemarie says she’s been declared “NED,” which stands for “no evidence of disease,” or in remission.
‘It felt like I was losing myself’
Ellie Habib, who lives in New Jersey, is a 29-year-old teacher for Deaf people. She started having symptoms of ovarian cancer in 2018 and went to the emergency room several times for severe abdominal pain.
Ellie says she went nearly 2 years without getting answers. She tried elimination diets and medications that treat irritable bowel syndrome, but nothing helped. She was in chronic pain and experienced bloating, pain during intercourse, and frequent urination.
Then, during a procedure to look for endometriosis, Ellie’s provider found that she had a tumor on her ovary. And she was soon diagnosed with low-grade serous ovarian cancer (LGSOC). This is a rare form of ovarian cancer that disproportionately affects younger people and is highly recurrent.
Ellie says that, while her diagnosis was absolutely devastating, she decided to jump right in and tackle it. She was concerned about fertility preservation, so she looked into what options were available — something she recommends for people who have similar concerns. She underwent egg retrieval to preserve the eggs from her less-impacted ovary. And then she had her ovaries and fallopian tubes, as well as 17 abdominal tumors, surgically removed.
After the surgery, Ellie started a chemotherapy regimen, which caused bone pain and other side effects. “It was horrible. I lost all my hair, and there was definitely the emotional piece,” she recalls. “It felt like I was losing myself. It just felt like my body was failing me.”
Ellie says it was important to continue moving forward with her life during her treatment, and she encourages others to do the same. During her treatment, she got married and found comfort in the people in her cancer support group.
“I have found so much support [through] meeting other patients,” she says. “That’s been the number one thing to get me through.”
Ellie’s cancer is now classified as no evidence of disease (NED), which means there are no detectable signs of cancer in her body. She takes an estrogen-blocking medication to prevent it from returning. But for those who are newly diagnosed, her advice is: “Go easy on yourself. Don’t take on too much. The rest of your life can kind of pause in that moment.”
A prolonged emergency
Karin Risko, a 65-year-old business owner from Lincoln Park, Michigan, started feeling intense indigestion in March of 2021. She also experienced bloating and a sensation of fullness. And, eventually, she was so uncomfortable that she went to urgent care.
The provider she saw prescribed her Prilosec and told her to see a gynecologist. After that, Karin went back and forth from her primary care doctor to the emergency room a couple of times. She kept having uncomfortable symptoms but getting no real answers. With the pandemic in full swing, she says, she had trouble even getting appointments.
Finally, Karin got a diagnosis of peritoneal carcinoma, stage 4 ovarian cancer. She endured nine rounds of chemotherapy and a massive surgery.
“In addition to female reproductive parts, my spleen and part of my diaphragm, colon, pancreas, and liver were removed,” she says.
During chemotherapy, Karin took anti-nausea medication prescribed by her provider and cannabis for pain. She also tried to stay hydrated by eating foods like watermelon. While the treatment was far from pleasant, Karin says she remained optimistic.
“Once I knew what was wrong, I just wanted to get through the treatment in hopes of being cured. [It] was tough but, honestly, it was not as bad as I thought it was going to be,” she says.
“The pain was not as bad as I expected, and I responded to treatment very well,” she adds. “The surgery was the hardest part.”
Now that she’s recovering, she’s found reason to celebrate. “I am much more grateful and thankful every day,” she says.
“I look for small things to find joy in every day. I recently signed up for dance lessons. In July, I celebrated my 65th birthday with a ‘65 and Alive’ themed party.” she adds. “I’m more than grateful to still be here.”
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Medical Editor
Compared to other types of cancer, ovarian cancer isn’t that common, and the number of cases continues to go down each year. While that’s good news overall, it can make it harder to get an early diagnosis.
Many women who develop ovarian cancer only notice mild symptoms — like bloating, mild weight gain, nausea, or vague stomach pain. And some do not notice any unusual symptoms at all. When you add that to the fact that ovarian cancer isn’t common, it’s easy to see how these symptoms can be chalked up to other, more common causes.
Afterall, the average lifetime risk of developing ovarian cancer is only about 1%. So, unless you have a condition that increases your risk of developing ovarian cancer, it’s natural to assume that the mild symptoms are from something like menstrual changes, reflux, or a stomach bug.
As these stories show, it’s important to listen to your body. If you notice something unusual, see your healthcare provider. And don’t hesitate to advocate for a more complete evaluation if your symptoms don’t improve. There are blood and imaging tests that can help diagnose ovarian cancer early. And an early diagnosis could save your life.
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