Doctors Dismissed My Pelvic Pain for Years — Until I Was Diagnosed With Ovarian Cancer
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For about a decade, Connie Bell, 38, dealt with heavy periods. She also had unexplained pelvic pain, which her doctors attributed to either irritable bowel syndrome or interstitial cystitis. “They told me, ‘This is just the way your body is,’” she says.
For a long time, Bell accepted that as true.
But things started to get worse starting in November of 2021. Bell, then 36, experienced intense cramping and greater pelvic pain than she was used to, seemingly out of nowhere. At the time, she was taking birth control pills and didn’t get periods while on them. But the pain prompted her to stop taking the pills, with the idea that menstruating might make her feel better.
She was wrong. The period she got the following month was so intense it left her doubled over, and it lasted for over two weeks. Bell was so used to being told that it was just what her body did that she didn’t call her doctor. Her pain returned to baseline in January, but in February, she had another period that left her doubled over for weeks. Now accustomed to life with some level of pain, she decided to wait to discuss her concerns with her gynecologist until her annual exam in May.
“I knew something was up, but it wasn’t intense enough to go to my ob-gyn yet,” she says.
When the day of her appointment arrived, Bell told her gynecologist about her recent abnormal periods. “She said, ‘This isn’t normal for your periods to vary so much, and you’re too young for perimenopause.’”
Unlike during previous visits, her ob-gyn was worried about her worsening symptoms and ordered a transvaginal ultrasound — a test in which an ultrasound probe is inserted in the vagina to look at the uterus, ovaries, fallopian tubes, and cervix. She told Bell her theory was that uterine fibroids were causing her symptoms.
But the ultrasound showed something on Bell’s left ovary that her gynecologist couldn’t identify. This led to Bell undergoing more testing and ultimately getting an MRI, which revealed growths all over her pelvis.
After this discovery, she was quickly referred to a gynecologic oncologist, who said there was a high likelihood that Bell had ovarian cancer, but they wouldn’t know for sure until she had surgery to remove and test the tumors.
Diagnosed With LGSOC
Bell’s surgery took place in August of 2022, 10 months after her disabling episode in November of the previous year. It lasted nine hours, during which both ovaries, her uterus, cervix, fallopian tubes, appendix, and a portion of her colon were removed because of the extensive growths the surgeons found.
Finding this out was deflating, Bell says. “It was already a complete blow to hear, ‘You have ovarian cancer.’ Then to hear that it’s very rare and under-researched was quite a shock.”
LGSOC Treatment
Aromatase inhibitors can cause issues such as weakened bones, joint pain, and menopausal symptoms. For Bell, the side effects manifested as hot flashes, fatigue, vaginal dryness, and bone pain.
Bell says her pain can get so bad that even ordinary tasks, like washing her hair or walking her dog, have become much more challenging. And she’s had to almost entirely give up active hobbies, like hiking, due to pain. “It really affects [my] quality of life,” she says. She’s even altered travel plans in order to visit places that don’t require as much physical activity that may be draining. “I didn’t want to go to New Zealand and not be able to hike,” she says.
Her diagnosis has also had a huge effect on her marriage, because her husband had to shift into a caregiver role. “We went from going about our daily lives to him having to help me go to the bathroom,” Bell explains.
An Advocate for LGSOC
When the fatigue from her treatment got to be too much, Bell quit her job as a nurse and decided to spend her extra time raising awareness of the disease. One way she’s done this is through volunteering with STAAR Ovarian Cancer Foundation, the only organization in the United States with a focus on educating and supporting those diagnosed with LGSOC.
Through her volunteer work on the communications and outreach committee, she speaks with other people who have been diagnosed and media outlets to help raise awareness of LGSOC.
“We let women know we can help them,” Bell says. And she’s been comforted by these connections herself. “It’s been so helpful to me to be able to share stories of what we’re living through, because they just get it.”
In August 2023, Bell was one of the participants in Verastem Oncology’s survey, which received responses from almost 200 women with LGSOC worldwide about their experience with the disease and their cancer care.
Almost all — 99 percent — of the survey participants reported never having heard about LGSOC before their diagnosis, due in large part to the lack of research on this cancer.
“We have to raise awareness of LGSOC if we want to change our outcomes,” Bell says.
Another way to advocate for your own health, and others’, is by participating in clinical trials, which help researchers make new discoveries about treatments for LGSOC, Bell says.
“It’s always weighing on my mind that I have this cancer,” Bell says. “I hate feeling like I have limited time, but statistically, I do. Mentally, it was really hard to come to terms with.”
Bell says her husband and family — especially her sister, who has been through her own cancer diagnosis — have been major sources of support as she’s adjusted to this new reality. “[My sister] has been incredibly helpful and supportive about what to expect with surgery and medications,” Bell says.
Bell advises anyone who’s experiencing symptoms — like bloating, frequent urination, back pain, or menstrual irregularities — to schedule a visit to their ob-gyn and find out what’s going on. “If [your gynecologist] can’t figure it out, get a second opinion,” she says. “It’s easy to feel too busy to do that, but you have to listen to your body, and find someone who [will listen] to you and [take] your symptoms seriously. Don’t give up until you’re satisfied.”
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