I assumed my stomach cramps were down to my period… but they turned out to be an ultra-rare cancer which left me planning my own funeral in my 30s

• Faye Louise, from West Sussex, began experiencing severe menstrual cramps 
• The 39-year-old was shocked when doctors told her she had a 17cm cyst 

A woman who assumed her stomach cramps were down to her period has told of her shock cancer diagnosis.

Faye Louise, from West Sussex, ended up needing six of her organs removed in a bid to stay alive.

At one point, the 39-year-old feared her disease — an incredibly rare tumour that begins in the appendix — would kill her and ended up planning her own funeral.

Faye Louise has now been declared cancer-free and is urging other women battling similar symptoms to get them checked out. And now she has started early menopause, after having her womb taken out.

She began experiencing severe menstrual cramps a few years ago, either side of her actual period.

It was only when she started to get pain at other points of the month — described as a sharp, constant stitch — that she started to think something wasn’t right.

Faye Louise, who works as a flight dispatcher and model, saw a GP, who initially put her pain down to constipation or bloating and prescribed her a laxative. 

However, when the pain didn’t get better, she was referred for an ultrasound.

The March 2023 scan showed Faye Louise had a 17cm cyst on her left ovary that was growing into her stomach and pushing into her bladder and kidneys. Doctors said she needed surgery to remove it.

Tests also suggested some swelling on her appendix, so medics decided to remove it, as well as the cyst, during one operation to prevent any further issues.

The cyst turned out to be benign.

However, when surgeons tried to remove her appendix, they discovered there was a cancerous tumour inside it.

Faye Louise, who has documented her journey with her 30,000 Instagram followers, said: ‘There was no indication of any cancer at all before the operation.

‘[It] felt like my world came crashing down.

‘I lost my mum to bowel cancer two years ago, so my initial thought was this is it for me — history is repeating itself.

‘I had panic attacks frequently. It was honestly the worst days and weeks of my life.

‘I was looking at funeral plans and telling my partner Will I wouldn’t live to see 45 or 50.’

Surgeons had been forced to leave the mass inside Faye Louise’s body to prevent it from rupturing and leaking cells into her other organs.

A biopsy revealed she had pseudomyxoma peritonei (PMP), which usually begins in the appendix, ovaries or bladder as a small polyp. It is thought to affect just three in one million people.

It eventually spreads through the wall of the appendix and to the peritoneum — the sheet of smooth tissue that surrounds the abdominal organs.

Often, patients have no symptoms of PMP, making it difficult to diagnose. However, signs can include abdominal or pelvic pain, difficulties becoming pregnant, abdominal swelling and bloating, changes in bowel habits and a loss of appetite. 

Faye Louise was referred to Basingstoke and North Hampshire Hospital in September 2023, which specialises in this type of complicated cancer.

She said: ‘My consultant showed me my scans and told me the cancer had spread around the peritoneal area (the membrane that lines the abdominal cavity).

‘He told me the proposed treatment was a very extensive operation and said they would have to remove multiple organs.

‘Heated chemotherapy would then be applied directly into the abdomen.

‘It’s the magic potion that kills off any cancer the surgeons can’t see.’

Faye Louise underwent this operation last month and it proved successful.

It saw eight organs removed, including her gallbladder, spleen, appendix, small intestine (which was rejoined to her colon), ovaries, uterus, and part of her liver, plus her peritoneum.

But the journey to recovery has been a tough one, with Faye Louise supported by her partner, Will, 30.

Faye Louise said: ‘I will now have a three-to-six-month recovery period at home. So far, it’s been very painful and very difficult.

‘I’m in early menopause now, so I will have to take hormone replacement therapy. I will also have to have follow-up scans annually to make sure there’s no reoccurrence.

‘Now I just want to look forward.

‘I’m excited to spend Christmas with my family and I want to cherish every moment in my life.

‘I feel like I have stared death in the face. Some days I just can’t believe I’ve been through this and it all started with a cyst.’

She added: ‘It still feels too good to be true that I’m cancer free.’

Faye Louise is also determined to raise awareness for PMP.

Writing on Instagram, she said: ‘Ladies if you feel bloated and think maybe [it] must be period […] go and get a scan, get checked out.’