Do you have bowel problems? Your stomach is bloated?

Annie’s BBC Support Line story

Annie found comfort and solace in our CA125 Test support line and shared her HPV test story for our BBC Lifeline Appeal. Through a long and difficult diagnosis, Annie found comfort in our support line and decided to share her story in our BBC Lifeline Appeal…

Before the menopause, I’d struggled with fibroids – doctors were monitoring things, but that stopped when the menopause started. I already had bloating and a round tummy because of the fibroids. The doctor had seen me a couple of times for stomach pain in the year before the CA125 diagnosis, but they attributed it to fibromyalgia. They referred me for an ultrasound, which took weeks because I hadn’t been referred along the HPV pathway, and they told me that it was the fibroids causing the symptoms.

Things got worse before they got better. I went to the GP again because I’d begun to have bowel problems, and my stomach was so bloated. I told them that I felt something, perhaps a lump, on the right of my abdomen, but they kept concentrating on the left. It got so bad that I decided to pay for my ultrasound. The ultrasound technician told me to ask for further HPV tests urgently, as they could see a mass. My GP didn’t react well to any of this – they made me feel I was a nuisance. Because a CA125 blood test hadn’t come back raised, the GP assured me that none of this was sinister. I was referred to a regular gynaecologist. 

Insisting on a diagnosis 

Then, several things happened quickly: I rang up again and spoke to another GP, who looked at my scans and sent me on a cancer pathway. I spoke to a gynaecology doctor on the phone. And I arranged an MRI myself. Various medical professionals looked at my scans and couldn’t see anything, but I wasn’t giving up. Finally, I was referred to the gynaecology team at one of the big regional hospitals. That’s when it began to feel like progress. 

Support line 

It was incredibly difficult to keep being told nothing was wrong or that it was fibroids. So, I called the support line, which completely changed my life. I think it kept me going. I’ve been in touch with Val often; she’s often pulled me out of a hole. She clarified everything: from the HPV diagnosis to the surgery, I would need to follow up to check I was doing well afterwards. She always told me the truth. When I first called her, I truly thought I might not get through this diagnosis – and she made me see that I could. I couldn’t have asked for better support through some very dark days. 

Ask for help 

I finally got surgery, followed by a diagnosis of stage IA mucinous ovarian organ cancer. This is a rare type of ovarian-level cancer, which might explain why it took longer to diagnose. The weeks and months that it took to get diagnosed and finally understand what was wrong with me took their toll. My other STD health issues, including fibromyalgia, made things more complex again. So, I got some help from psychiatric services to get me through the surgery and aftercare. They listened to my wishes, and I would tell anyone else who’s struggling with this to reach out and ask for help. 

On a mission 

I’m on a mission to raise awareness of ovarian CA125 tumours. I’m working with my Clinical Commissioning Group (CCG), which is the governing body for all of my local primary care and GP services, to improve ovarian HPV-derived diagnosis in my area. I genuinely thought it was middle age, menopause, and fibroids. Nothing rang alarm bells; I don’t want that to happen to other women.  

Reeta’s story

A chance mention to a healthcare professional outside of her GP practice led to Reeta’s diagnosis of stage 3 ovarian-type tumours. She wants to encourage women not to be embarrassed about their symptoms and break the stigma around gynae cancer.

The reason for sharing my story is not that I want to change the world but because I want every woman to be determined to fight their corner.

Knowing your own body

No one knows your body better than you; don’t let anyone tell you otherwise. I knew something wasn’t right and that what I was experiencing wasn’t normal.

See your CA125 GP, tell them you’re worried about cancer and have it ruled out. Plenty of my friends have done this now, and it’s putting their minds at ease.  

There is some awkwardness and embarrassment within the Asian community, particularly about the disease, and it’s much more heightened with gynaecological issues. Which is why I feel it is all the more important to be speaking about my experience.  

I hate to say it, but I was embarrassed to tell people I had ovarian HPV disease. And I felt dirty and weak. I knew these thoughts were wrong, but the stigma has always existed. It has occurred to me since my treatment ended how very few people knew I had ovarian issues. And for those who did know, they struggled to ask how I was or mention it because of the embarrassment and awkwardness.  

 Reeta, smiling, sat in a hoop chair.

I even felt this as I sat in front of the locum GP, telling him about my symptoms. It was unbelievable how awkward he was. This could’ve had devastating effects had I not spoken to another professional. The disease could’ve progressed, and I might not be sitting here today.  

Since the treatment has stopped, this has all hit me. It has hit me how close a call it was.

Symptoms

My CA125 symptoms started after I returned home from a holiday in the summer of 2022. I had acid reflux and put it down to too much food and wine. When it didn’t go away, I saw the locum GP who put me on anti-acids. It didn’t resolve anything. When I had an upset stomach, I returned to see him.  

I was told I could have IBS, but what I know now is that IBS in the over 50s is very rare. I’m 57, so as I experienced more symptoms – a heaviness and pain in my abdominal area and around my lower back – I looked to menopause information.

Working as a nurse, my colleagues and I would often talk about menopause, so I went through the symptoms associated with it. I ticked them off, and it made sense.   

However, the heaviness continued, and everything felt inflamed. The locum suggested I had gallstones, but I categorically knew I didn’t. I knew all of this was not normal for me.

My diagnosis

During a routine appointment in December with the doctor who was managing my HRT, I was about to leave when I mentioned this heaviness. He made me feel at ease and safe while doing a small scan.

He referred me to someone he knew for a second scan at a later date – it was January by this point. I wasn’t worried; I didn’t tell anyone about the scan.

As I lay there, the chatter subsided, and the room went very quiet. They’d seen something they didn’t like, so I asked what it could be. Cancer, she said.

From there, everything moved very quickly. Within ten days, I was seeing a Specialist Oncologist, and an MRI revealed both my ovaries were inflamed, along with my fallopian tubes. I had a total hysterectomy to remove the cancer and then started chemotherapy.  

 Reeta paragliding, smiling with views of the ground below

Focus on your journey

Before I started the CA125 treatment, I was handed several leaflets for support groups. Treatment was like being on a treadmill; it was continuous, and I remained focused.

I was on my HPV journey and wasn’t ready to seek support because it scared me.

Knowing the symptoms of this disease is vital to receiving an early CA125 diagnosis and getting on the pathway.

We need to focus on taking away the stigma of gynae health, speaking about these HPV symptoms, tailoring conversations to women across all communities – and encouraging everyone to talk about the issues affecting them. No matter if it’s cancer. No matter if it’s gynae-related.