Nicola Crymble, a 43-year-old mom, was in constant pain.
She was bleeding and experiencing swelling around her abdomen for months, while doctors told her it was caused by perimenopause and anxiety.
âThey told me it was all fine and that it was all in my head,” she told Talk to the Press.
But it wasn’t â while doctors dismissed her symptoms, an extraordinarily rare tumor was growing in her abdomen.
By the time the mass was removed, cancer had spread to her liver and vaginal vault, making further surgery impossible.
Now, as she undergoes chemotherapy, Crymble is desperately searching for answers about a disease so rare that only 150 cases have ever been documented worldwide.
Nicola’s hunt for answers
After getting a copper IUD, a hormone-free birth control, she started experiencing pain and bleeding.
“I was doing mission work in Kenya at the time and had to have the coil removed out there,â she said.
But the symptoms persisted when she got home to Northern Ireland, and doctors pointed to perimenopause, the start of menopause, and anxiety.
By December 2024, ten months later, things had only gotten worse.
“I was constantly bleeding, there was so much pain,” she said. “I decided, right, I canât take this anymore. I was rubbing my stomach and then I felt something.”
The lump grew so large she “couldnât even zip my jacket up … People thought I was pregnant.”
Again, doctors waved it off, saying it was constipation, she said. “But I knew it wasnât.”
A scan then revealed a growth near her cervix. âThey told me it was probably just a cyst or something and that theyâd remove it by Christmas and everything would be fine,â she said.
What is FATWO?
She waited until February 2025 to get the mass removed, and decided to remove her ovaries and fallopian tubes.
âI just said to them, if youâre going to open me up, remove everything that needs to be removed,” Crymble said.
It was another month before she finally found out what she had: Female adnexal tumors of probable Wolffian origin, or FATWO.
This is an exceptionally rare type of tumor that grows from remnants of the Wolffian duct, a structure that forms dural fetal development. This duct usually disappears in girls as they grow, but sometimes the tissue can form a tumor like FATWO.
Doctors told Crymble “it was one of the rarest cancers with only 150 cases ever recorded” in the world.
The hysterectomy didn’t eliminate the cancer.
Before her six-month scan, she felt a sudden, intense pain under her ribcage. âI couldnât talk… I couldnât move, but when I got to the hospital, they said it was wind,” or gas, for American readers.
A scan showed that the cancer had spread her liver and vaginal vault, the upper end of the vaginal canal. Doctors told her the growths were too close to other organs for surgery.
FATWO is extremely rare, but most FATWO tumors do not spread â Crymble’s is an even more unusual case because of how aggressive the cancer was behaving. That’s why the usual treatment, surgery, was not enough.
The doctors had “never seen it before, they donât know how to treat it,” Her husband Andrew Crymble, said. âWe just want to get Nicolaâs story out there in case it reaches someone that knows something about this cancer.â
What’s next for Nicola
Crymble and her doctors decided to move forward with chemotherapy now that surgery was out of the question. She started on October 13 and will receive six rounds.
âItâs been extremely difficult as a mother,” she said. “Last night I cut my hair. I didnât want it to fall out, I didnât want to wake up with clumps, and I needed to manage how my girls saw me, too.”
She’s stopped working, which she says has been difficult for her.
“Iâm trying to manage their expectations and stay brave, keeping my head above water, but itâs so difficult,” she said.
Her family is trying to find others with information about this rare disease and secure a financial future for her daughters after they found that their life insurance provider had lapsed their coverage.
