I had part of my vagina removed and live with two stoma bags due to deadly cancer
A YOUNG woman has revealed that she lives with two stoma bags and has had part of her vagina removed due to a deadly cancer.
Sophie Anderson said having bits of her vagina cut out made her feel as if she "wasn't as much of a woman anymore."
The 24-year-old, of Huntingdon, Cambridgeshire, was diagnosed with bowel cancer in 2019, after being misdiagnosed with IBS and depression,
In June 2021, Sophie had a 14-hour operation to remove the tumour as well as part of her vagina, rectum, bowel, bladder, and tailbone, where the tumour had spread.
She also had pelvic reconstruction, some of the nerves down her left leg were cut due to the damage caused from her tailbone.
A permanent colostomy and urostomy were fitted, meaning Sophie's waste exits from an opening in her stomach (stoma) into a bag attached to her body.
Sophie said: "Losing part of my vagina made me feel like I wasn't as much of a woman anymore.
"I was already completely infertile, with no possibility of having any biological children because of surgery," she added.
She had already had a full hysterectomy (removal of the reproductive organs), after doctors first tried to remove the tumour in 2020, which made her infertile and menopausal.
When she got home, she began a year-long recovery, relying on her parents (Elizabeth and Simon Anderson) and boyfriend (Alex, 24), to help her rebuild her health.
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"Alex and I have been together for six years and he's been so supportive throughout.
"We have spoken about adoption in the future, or surrogacy. But we will just have to see what happens.
"For so long, we were almost in this carer-partner relationship and now we are getting back into being a proper couple again.”
Sophie first started getting symptoms when I was 18 years old but didn't get diagnosed for nearly four years.
She said: "One day I needed to go to the toilet and passed a lot of blood.
"It was weird, but it didn't happen again for a while, so I thought maybe it was just a one off.
"Then I started to feel really weighed down, constantly bloated and fatigued.
"I was quite depressed because my body felt so weak and I couldn't pinpoint why."
As her mental health became increasingly fragile, Sophie moved back home in Easter 2017 and saw her GP, who diagnosed depression and anxiety.
In July 2017, by then working as a carer, she began passing blood more often.
She said: "Sometimes I would go for a week without anything. Then there'd be lots and I was getting more constipated."
Seeing different doctors over the coming months, she was diagnosed with digestive disorders including IBS, Crohn's, ulcerative colitis, colon spasms and constipation.
It wasn’t until Sophie had dropped two stone in weight over the summer of 2019, while on a restricted diet to see if she had Crohn’s disease, that doctors considered otherwise.
She was booked in for a colonoscopy, to check inside her bowels and a biopsy revealed a month later that she had bowel cancer.
Sophie, who had just turned 22, said: "I remember being relieved at first, because it meant there was actually something wrong with me, but I think I just felt numb.
"I remember saying to my GP that I have a history of bowel cancer on my mum's side of the family.
"I think, because of my age, it was just assumed that it could never be cancer, though."
Bowel cancer’s key symptoms include blood in stool, a change in toilet habits, such as constipation or diarrhoea and abdominal pain.
Constipation is rarely caused by bowel cancer, the NHS says.
Sophie said: "No one seems to look for bowel cancer in people under a certain age.
"If someone had suspected I had bowel cancer earlier, I would probably be in a better position now.”
Sophie’s grandparents had died of bowel cancer.
And investigations revealed that she had Lynch syndrome - a hereditary gene which shows a strong history of colon cancer - also detected in her grandfather's DNA, as well as in her mum.
Sophie said: "It never occurred to me that I could have the same."
Families that have Lynch syndrome have more instances of cancer than expected.
But generally, although bowel cancer is considered an older person's disease, 2,600 people under 50 are diagnosed each year in the UK, and this number is increasing.
Heavy surgery
After several failed attempts to remove the tumour Sophie started to think it was "actually something that could kill me."
"It started to feel really real and to mess with my head. I became very scared of the idea of dying in my sleep."
To try and shrink the tumour before surgery, she was admitted to hospital for three months of immunotherapy - a specialised cancer treatment.
She pulled through despite suffering significant liver damage and suspected sepsis - a life threatening reaction to an infection.
During surgery, doctors found internal bleeding and Sophie was taken back in theatre for four hours.
She didn't come round for another five days.
Sophie said: "I was told that I woke up after surgery and wouldn't stop screaming.
"Waking up with two bags on my stomach and not feeling my left leg was really scary. I felt broken.
"I was scared my life could be over and the surgery might not even work.
"The surgeon told me the tumour on my bowel and pressing on my organs had been the size of a football."
Sophie had also suffered a stroke, which means she now sometimes becomes confused or muddled.
For two months after her operations, Sophie was kept in intensive care.
This summer things turned a corner; Sophie drove for the first time in two years, went on a charity-organised trip to Bournemouth, Dorset, and two music festivals.
In September she will return to the job she had before her diagnosis - a teaching assistant.
Sophie is now in remission and, inspired by bowel cancer campaigner Dame Deborah James, is determined to raise awareness of the disease, particularly in young people.
She said: "It is so important to recognise the symptoms, even if you are young, when it's easy to brush off certain things and think they will go away.
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"You have to listen to your body and push to get the right tests done, because this could save your life.
"I don't want anyone else to go through what I have been through."
