In this blog, Fay shares her story of getting diagnosed with stage 3 womb cancer, and how her diagnosis led her to start campaigning for gynae cancer awareness.

At the end of 2019 I went to see my GP because I thought the symptoms I was having were the perimenopause, but I have since realised it was also the first symptoms of womb cancer. One of those symptoms was irregular bleeding while on the pill, even though I didn’t normally have breakthrough bleeding, and at times it was excruciatingly painful. My GP agreed with me that the symptoms were caused by the perimenopause and didn’t offer any further testing or investigations. 

2020 was not a good year to be ill due to COVID. I had a couple of occasions where I contacted my surgery with symptoms. In one phone appointment I told them I was having lower belly pain, which they diagnosed as a UTI without asking for a sample and without inviting me in to be checked out. It’s just shocking when I think about it. 

It took a year before I went back to see my GP face-to-face because of my concern over worsening symptoms. I was suffering with pelvic pain, pink watery discharge, lower back pain and problems going to the toilet. My GP referred me for a scan and to Gynaecology, but by March 2021 I had heard nothing other than a letter to say I was on the waiting list for Gynaecology. My symptoms and my mental health had both deteriorated by this point, so I went back to my GP. I was told that the scan had been cancelled without any reason, I was referred to Gynaecology for a second time, and I was told to double-up on my contraceptive pill for 3 months to see if that would help. I followed the advice but for 3 months things just got worse, I had terrible fatigue, breathlessness and was struggling to walk. All my symptoms had worsened, so in June 2021 I went back to my GP. At this point I still hadn’t heard from the Gynaecology team. My doctor finally did an external examination and sent me for a blood test for CA125. This came back raised and I was put on the 2-week referral pathway.  

On 5th August 2021, roughly 2 years after my symptoms started, I was diagnosed with womb cancer. 

Womb cancer?? I’d never heard of anyone having womb cancer. I was expecting ovarian or cervical as those are the two gynae cancers that get talked about. I was surprised to discover that womb cancer is actually more common than both of those. Why is that when nearly 10,000 people are diagnosed with it in the UK each year? Straight away I agreed to a full hysterectomy and my surgeon reassured me it was stage 1 and nothing to worry about. I told him I wasn’t so sure as I thought I’d been having symptoms for over 18 months. He soon apologised when the histology came back as stage 3. Because of the staging I had to go through 6 rounds of chemotherapy, 25 rounds of radiotherapy and 2 of brachytherapy (I’d never heard of that either!). I have to thank my family and friends for the love and support they showed me during this time which got me through. 

Treatment ended in June 2022, and as I was really struggling with side-effects and my mental health, I decided I needed to do something to turn my cancer journey into something positive. Around that time, I heard about the fabulous ‘Bowelbabe’ Dame Deborah James, her campaign to get the symptoms of bowel cancer on to toilet paper packaging, and her success with Andrex. I decided I would follow suit with my own campaign to get the symptoms of ALL FIVE gynaecological cancers on to packaging for related products such as period products and underwear. My campaign #CHECKYOUOUT gained momentum, and has been shared and liked by Julia Bradbury, Dame Kelly Holmes and Zoe Ball to name a few. I am persistent, posting on Instagram and tagging companies such as Tampax, Always and Bodyform. Andrex were the first company to agree to make some changes as they said they would be adding the information to their website! Then, in December 2023, Bodyform contacted me to say that my campaign had inspired them, and they would be changing the QR code on their packaging to go directly to The Eve Appeal website!! How amazing is that!! The Eve Appeal are a fantastic charity, and the main charity for all gynae cancers in the UK. They have a wealth of information on their site, plus a wonderful nurse-led advice line. I’m so proud of this outcome, but I still want other companies to make the changes too, so my campaign continues… 

Nobody would ever want to go through stage 3 womb cancer, I live with the side-effects every day, but I wouldn’t be campaigning without having received my diagnosis. This amazing outcome with my campaign makes it all worthwhile if it means someone gets an early diagnosis and doesn’t have to go through the trauma of advanced cancer. 

Fay Peace 

@cancercampaigner 

#CHECKYOUOUT