Mum diagnosed with rarest cancer in the world after doctors dismissed symptoms as perimenopause and anxiety

Mum diagnosed with rarest cancer in the world after doctors dismissed symptoms as perimenopause and anxiety Nicola Crymble was diagnosed with FATWO - Female Adnexal Tumour of Probable Wolffian Origin - after doctors initially dismissed her bleeding and intense pain as perimenopause A mum whose bleeding was dismissed as a sign of perimenopause was told it was "all in her head" before she was diagnosed with one of the world's rarest cancers. Nicola Crymble, 43 from Annalong in County Down, Northern Ireland, first experienced pain and bleeding while working in Kenya, after she had a contraceptive coil put in. But the symptoms were dismissed as a combination of perimenopause - a pre-menopausal stage when the body's hormones fluctuate - and anxiety when she returned to the UK. They persisted even when the coil was removed, but it wasn't until after 10 months of bleeding and a trip to A&E that she would discover what was truly wrong. She received a scan on her return to the UK that revealed a growth. Further exploration diagnosed the growth as FATWO - Female Adnexal Tumour of Probable Wolffian Origin - one of the rarest forms of cancer in the world, with only 150 known cases reported since 1973. Nicola's cancer metastasised to her liver and vaginal vault, and with no known treatment, her and husband Andrew, 44, are desperate for help. She said: "Doctors said it was one of the rarest cancers with only 150 cases ever recorded. My husband, Andrew, asked 'what in America, or the UK, or Europe?' and the doctor said 'no, in the world'." Andrew, a funeral director, said: "I was asking the doctor questions about it and they just don't know. They've never seen it before, they don't know how to treat it. We just want to get Nicola's story out there in case it reaches someone that knows something about this cancer." Nicola, who was a classroom assistant, had her copper coil inserted in February 2024, but it caused intense pain that forced her to remove it while she was abroad in Kenya. She explained: "I started bleeding and was in a lot of pain. I was doing mission work in Kenya at the time and had to have the coil removed out there." When she returned to Northern Ireland, doctors said it was likely caused by perimenopause, and that her anxiety was making her think it was something else. But Nicola's pain, bleeding, and swelling persisted. Speaking to Talk to the Press, Nicola said: "They told me it was all fine and that it was all in my head." She knew something was deeply wrong after the pain and bleeding persisted for 10 months, leaving her feeling lethargic. She added: "I decided, right, I can't take this anymore. I was rubbing my stomach and then I felt something. I asked Andrew to feel it and it was a huge lump." They went straight to A&E in December 2024. Nicole said: "I couldn't even zip my jacket up my tummy was so swollen. People thought I was pregnant." "The doctor said it was probably just constipation. But I knew it wasn't. I said that there was something wrong, and it needed to be checked properly." That's when a scan revealed a growth in her cervix. She continued: "They told me it was probably just a cyst or something and that they'd remove it by Christmas and everything would be fine." After months of waiting for surgery, she was eventually put on an emergency list. Nicola explained: "I just said to them, if you're going to open me up, remove everything that needs to be removed." On February 14, 2025 - almost a year after her symptoms started - Nicola had a full pelvic clearance. The procedure removed her ovaries and fallopian tubes along with the mass. She said: "A month or so later, the pathologist said it was a type of cancer called FATWO. They said it was one of the rarest cancers with only 150 cases ever recorded. "My husband, Andrew, asked 'what in America, or the UK, or Europe?' and the doctor said 'no, in the world.'" FATWO stands for Female Adnexal Tumour of Probable Wolffian Origin. There have been around 150 cases in the world since 1973 - but exact figures are unknown, with some estimations sitting below one hundred cases. The only treatment option is usually surgery, with no evidence that the cancer responds to chemotherapy. Nicola's husband, Andrew, a funeral director, said: "I was asking the doctor questions about it and they just don't know. They've never seen it before, they don't know how to treat it. "We just want to get Nicola's story out there in case it reaches someone that knows something about this cancer." Despite having the mass removed, Nicola still didn't feel right. She said: "You know when there's something wrong, but they just kept saying it was probably anxiety again because they'd essentially put me into menopause by removing my ovaries." As Nicola neared her six-month scan since the operation, she felt a sudden stabbing pain in her ribcage. She said: "I was out in the garden and there was this almighty pain under my ribcage, I couldn't talk, my children had to help me." "I couldn't walk, I couldn't move, but when I got to the hospital, they said it was wind. Then they did a scan and the doctor said 'the oncology team has obviously seen this other growth,' and I just said 'what other growth?' Then he said the team will be in touch." After more scans back and forth, Nicola was told the FATWO had metastasised - which only happens in about 17 percent of cases. The growths were in her liver and vaginal vault, too close to her heart and bowel for surgery. Despite there not being any evidence chemotherapy works on this type of cancer, doctors told Nicola "we'll give it a try." The mum of three started treatment last week, on October 13. She said: "It's been extremely difficult as a mother. Last night I cut my hair. I didn't want it to fall out, I didn't want to wake up with clumps, and I needed to manage how my girls saw me, too. "I didn't want them to see mummy having bald patches. They said they'd like to cut my hair. My younger daughter wants to keep some of it and the rest is going to the Princess Trust. I haven't been at the pick ups for school, I'm not around, I'm not going to work, and they're confused. "I'm trying to manage their expectations and stay brave, keeping my head above water, but it's so difficult. You're never the same after a cancer diagnosis." "Every ache and pain you just assume the cancer's back. The unknown is just terrifying. It's so so scary. I haven't been able to work and I've really struggled with that. I just want to know that the child I look after in the school is okay." Nicola will now receive six rounds of chemotherapy, one every three weeks. But her and her husband, Andrew, are desperately seeking more information. When Nicola was first diagnosed, the pair were advised to go to lawyers and get Nicola's finances in order. That was when they discovered an issue with Nicola's life insurance. Andrew said: "Apparently our insurance provider had switched, and our payments hadn't gone through - but the emails had gone to spam. Now they won't cover us." "We'd been paying into that insurance for seven years, and now it was for nothing. We appealed the decision, we went to the ombudsman, but they said there is nothing they can do. "No one else will cover Nicola. The one thing she wanted was financial security for her little girls, and now I can't even give her that." The pair have set up a GoFundMe and are encouraging people to take part in the £5 challenge in the hopes that if enough people donate a small amount, they can create some more security for their children. Nicola is also documenting her health journey on social media with the handle: @livingwithfatwo