In December 2024 I went to A&E with a chest pain and had some routine blood tests. Randomly, the results showed high liver enzymes, so I was sent for an ultrasound scan just to cover all bases. I thought nothing of it because it was unrelated to the chest pain. Shockingly, a large mass was found on my liver. I was sent for an MRI scan, which confirmed I had an 8cm x 7cm x 6cm tumour on my liver, which is the size of a jacket potato. I was told there and then: ‘We think you have cancer’.

Obviously upon hearing those words, our world shattered. How can you have something that size with no symptoms and not know?

After many scans, blood tests and appointments I made the decision to use BUPA healthcare through my work because it meant the fantastic liver surgeon could fast-track a major surgery. I was really grateful to have this option because the NHS wait times were uncertain and we really didn’t want to postpone the wedding of our dreams in Las Vegas. I would prompt anyone with the option of having private healthcare to get it!

Urgent operation

The liver specialist team did extensive tests which suggested my tumour could also be a benign condition called a hepatic adenoma, which can be catastrophic if it ruptures because you bleed out internally. They would only be able to confirm the diagnosis when all the mass was removed and tested, so they suggested an urgent operation.

I had an embolisation in January 2025, which is a procedure that stops the blood flow that ‘feeds’ the tumour. Thankfully, it was a great success and on Thursday 13th February 2025 I had major surgery to remove 55% of my liver along with the tumour and my gallbladder. They also removed the surrounding lymph nodes in case the diagnosis showed hepatocellular cancer (HCC).

The human body is an incredible thing – I had no idea the liver can regenerate and grow back to the size your body requires to function within a few months.

I was in hospital for five days in total, including one day in ICU and a week after I was discharged, my surgeon confirmed the tumour was a benign inflammatory hepatic adenoma caused by long-term use of the pill. I had been on the pill for 20 years with no break and never had any problems, but didn’t realise what damage it was doing to my body! The tumour had probably been growing for years and I had no idea and if I’d I carried on taking the pill and the tumour hadn’t been found, it would have continued to grow and could have turned into cancer and/or ruptured.

Although tumours are very rare and stated as a potential side-effect in the pamphlet of the pill, no one discusses this with you and they are usually only ever found incidentally. You hear these horror stories and think it will never happen to me, but it can and it did!

Helped to understand

I found out about the British Liver Trust through Googling my condition and coming across an information page on tumours. I then was able to review all the other patient stories which gave me comfort that I wasn’t alone, and it made me decide to also share my experience to help raise awareness. I visited the website for more information on overall liver health too which has set me up post surgery to ensure I am keeping my left lobe healthy.

I’ve connected with so many women in support groups on social media who are all in the same boat as me and it’s really alarming. I had never heard of the condition and neither had anyone I know. Seeing their stories helped me understand what I was about to go through and come out of the other side of it.

I now have an eight-inch scar down my abdomen which I’ll happily wear as a reminder of how strong I’ve been and how goddamn lucky I am this was accidentally found. I will be eternally grateful to my surgeon, Charles, who has undoubtably saved my life.

The post Emily’s story: “The hepatic adenoma was the size of a baked potato and had probably been growing for years” appeared first on British Liver Trust.

I’ve always suffered with things like bloating and IBS, but nothing that seemed more serious until 15th September 2020 when I woke up in the night with severe abdominal pains. Although it was in a different part of my abdomen, at first I took it to be IBS. That pain would usually last four or five hours whereas this was about 18-19 hours and it was a constant, severe agony so I called 111 who referred me to A&E.

A&E did the usual tests and the results would take an hour or two. Because I was in a lot of pain and hospital chairs aren’t very comfortable, I just wanted to go home to bed. However, after a couple of hours my husband brought me back as he could see something wasn’t right.

The hospital then did an X-ray and CT scan which showed a mass. I was then moved to a second hospital there was again lots of waiting and when I finally got a bed several hours later, I managed to fall asleep but was woken up to have an MRI. I was consumed by the pain, feeling delirious and my vision was a bit funny too and after five minutes in the MRI I squeezed the button to say ‘I can’t do this’. There was a bit of a hoo-hah about that, but they eventually sent me back to the ward and gave me some diazepam as they thought I was having a panic attack. However, I believe it was the impact of the internal bleeding and my body shutting down.

I remember a doctor saying the word ‘liver’ which confused me because I thought “I don’t even drink, this has to be a mistake”.

In the five minutes that I was in the MRI they saw that I was actively bleeding, so I had an emergency embolization. From what I understand they went in through the groin and inserted some sort of coil to stop it. The procedure took two or three hours and I woke up at one point – maybe they just gave me an anaesthetic that worked from the bottom down. I remember being aware of staff around me then I went back into it.

The plan was for me to be transferred to ICU in yet another hospital which had a liver unit, and while I was waiting for an ambulance they put me into an office room where my husband and parents were allowed to see me for about ten minutes. Until now I had been on my own because of the Covid restrictions. They’d been told I’d had a ruptured tumour which wasn’t cancerous and I later found it was an adenoma.

I was in ICU for around five days and was conscious but on a lot of drugs. One of the consultants casually told me the tumour was the size of a small football which alarmed me. I think the plan had been to wait a while and let my body calm down before they removed it, but a CT scan a couple of days later found that it was bleeding again, so they had to do an emergency liver resection. The surgery took around five-and-a-half hours and they removed the tumour, which was 1.6kg and 20cm in diameter, and around 60% of my liver went with it. There was also a lot of blood in my stomach, so they had to drain it and give me a blood transfusion. The blood touching the lining of my stomach was what had been causing the pain.

After the surgery I was back in ICU in a world of pain, then moved to a recovery ward for about a week-and-a-half before I came home. I could walk but everything was just pain and I couldn’t sleep on my side for a long time. Thankfully my family helped me wash, dress and move about.

Adenomas are extremely rare and they’re believed to be linked to the contraceptive pill

Adenomas are extremely rare. My consultant said there’s little research or data but they’re believed to be linked to the contraceptive pill, which I was on from aged 17/18 until 31/32. I was advised to come off contraception and wouldn’t touch it now. I was shocked and baffled that not only had something so big been on my liver for years, but I didn’t know because there were no obvious signs. All the other organs would have been crushed, cramped and moved around but that didn’t show itself in any way to me. I hadn’t felt anything when I touched my stomach and nothing stuck out or felt weird.

Sometimes an adenoma can come back but they think it will be ok. A follow-up MRI scan in January 2021 showed the liver had regenerated to a good size. It doesn’t usually go back to how it was, but my consultant said it was in a good place and I was then officially discharged. I’ve since struggled a lot with pain still around my scar. At first it felt like having a really tight, heavy metal belt around my upper abdomen that I couldn’t loosen or take off. I took Co-cadamol for quite a while and saw a lady who specializes in scar tissue massage which was painful but did help a bit. It’s not so much a pain now, but more tightening or discomfort and it’s become my new normal.

I’ve asked about pregnancy and was told it shouldn’t affect anything but if I did get pregnant a specialist monitor would be recommended to make sure everything was ok. I also asked what the scar tissue pain would be like when my stomach expanded and was told it would probably be very uncomfortable.

I ended up having seven months off work and was diagnosed with PTSD because I was struggling physically and mentally with the trauma. I’ve been having therapy ever since which is helpful and also found out about the charity ICU Steps. I joined one of their support groups who told me that if you’ve been in ICU you can have a follow-up clinic – during non-Covid times you could go in, see where you had been and even meet some of the staff who looked after you. Unfortunately, I had to have a virtual call where I spoke to a general consultant – not my consultant, and my physio and psychologist.

The ICU Steps group also said nurses write daily patient diaries which you can see afterwards to give you a sense of what was going on, but unfortunately my hospital didn’t do that. I would have benefitted from that because what happened was just awful, lonely and isolating. Because of Covid I wasn’t allowed any visitors who could have had conversations with the nurses and doctors and relayed them to me. Bar the odd conversation here and there we were all in the dark.

We did a liver resection and removed the tumour

I pushed and pushed for a face-to-face debrief with my consultant and managed to see him in person in April 2021. I had a lot of questions, but he was very dismissive. I asked him to take me through the surgery step-by-step and he replied: “We did a liver resection and removed the tumour.”

Another staff member there said: “Have you drawn a picture for Maneek of her liver to show what you took away?” and he said he’d done that in ICU, but I couldn’t remember, so she quickly drew something for me.

I wanted to request my medical notes and asked him to point me in the right direction. He said: “You can request them, but I doubt you’ll understand what any of it means.”

I really wanted more detail to understand what I’d been through and to have clarity and closure, but he was very much of the opinion that I survived and should now go out and live my life and forget about it. I felt he lacked the understanding and empathy of being in pain and struggling mentally and I broke down in tears.

I don’t have the notes from where the resection was carried out, but have notes from the second hospital where the embolisation took place. It took a long time to get them as it’s such a process and it’s taken me a while to look at them because, mentally, it’s been exhausting. Can I say that after three years I fully understand and got what I needed? No.

I’ve been referred back to a consultant to investigate an ovarian cyst

This year a new pain has come up near where the drainpipe was. My GP arranged an ultrasound which was clear and a CT scan. My stomach area is all clear and organs looked fine but, they want to re-investigate an ovarian cyst that came up while I was in for my liver. I was seen by a consultant for this in 2021/2022 and discharged in Nov 22. I’ve now been referred back so things aren’t back to normal and I don’t know if they ever will be.

When I got pregnant in 2024 I had an ultrasound on my liver at around 34 weeks to check that no more adenomas had developed. Thankfully it was clear, but I feel it should have been done earlier. If there had been any more, it would have been a serious concern. I had a few days here and there during my second trimester where I felt pressure and pulling around the scar, but this didn’t last long. Losing weight during the pregnancy after I was diagnosed with gestational diabetes also helped and I regularly massaged my scar and bump during my third trimester. My liver history was discussed a lot during the labour/birth as a precaution, but it didn’t cause any issues and since having Leo I’ve not experienced any scar pain.

I didn’t know anything about adenomas and when I looked online there’s barely anything there. Although they are really rare, people do need to know about them. So when I found out the British Liver Trust was looking for patients to help review its information about liver tumours I decided to take part. This whole journey – right up to this day – has been very lonely and it felt like a way of continuing my healing and raising awareness. I feel like this happened to me for a reason and I wouldn’t be me if I just went about my life like nothing had happened. I want to talk about it, be open about it and help other people who may have gone through it – that’s why I’m sharing my story here too.

If you are diagnosed, be persistent, push to get checks and be monitored. Push for answers. You may not always get them, but if it’s something you really need, please don’t give up. We live in a culture where people rush you to recover, but everyone knows their own body and mind so take your recovery at your own pace. Try to get all the different avenues of support that you can – just talking to people in a similar situation can really help.

The post Maneek’s story: “One of the consultants casually told me the tumour was the size of a small football” appeared first on British Liver Trust.

My journey started in 2008 during my first year of Sixth Form. I’d been feeling exhausted for a few weeks and had been diagnosed with anaemia. Then, seemingly out of nowhere, I developed severe chest and abdominal pains and felt very faint.

In A&E, my blood pressure was off the scale and Doctors noted that my tummy was very swollen; I had always hated my ‘pot belly’ but in hindsight this was a sign of something being wrong. I was admitted to hospital, and over the course of 3 weeks had countless blood tests, scans and other investigations, picked up a nasty infection leading to sepsis, and generally baffled the doctors.

Eventually, after an MRI and a liver biopsy I was diagnosed with ‘hepatic adenomatosis’ – my liver was hugely oversized, and contained around 100 benign tumours. It was thought that my sudden pain may have been caused by one of these lesions rupturing, and there was a high risk of this happening again or the tumours becoming cancerous, so it was decided that I would need a transplant. This was a huge shock.

A long wait

Unusually, I waited 4 years for my transplant. In this time, I finished Sixth Form, went off to University in Sheffield, and tried to maintain normality knowing my life could change in one moment. I lost a lot of weight, slept a lot, and had stomach issues, but didn’t appreciate at the time how sick I was.

It’s a strange feeling wanting and needing something so badly whilst also being terrified of it happening. My call interrupted a Saturday evening library session, and the two hour ambulance ride back to Birmingham was spent being distracted by a lovely paramedic whilst also texting everybody I knew because I was convinced I was going to die. On arrival I was rushed through some last minute medical checks whilst the liver was prepared, and finally at 9am I was taken down to theatres. I had never had surgery before and this was certainly a baptism of fire!

My memories of ITU are patchy; the strong drugs and massive bodily trauma plunge you into what is best described as a dream state. I am told I talked a lot of rubbish. All I really remember is flashes, beeps, and desperately begging for another suck of water from a sponge, as you aren’t allowed to drink. I was also surprised to find myself with several tubes emerging from my body leading to bags of various bodily fluids, including a urinary catheter.

It had been so long since I’d been listed for transplant that I’d blocked out knowledge of the practicalities, which was probably a good thing! I was told that mine was a split liver transplant; I received the larger lobe of my donor’s liver, and a child received the other. I had no idea this was possible, and remain in awe of how one selfless decision by a donor and/or their family can transform so many lives like mine – I hope this brings some comfort.

Recovery

Back on the ward, time moved slowly but I made fast progress. The first time I managed to sit up in my chair through an entire episode of Jeremy Kyle feeling like an enormous feat, and not just because of the choice of programme. I had a fantastic support system and lots of visitors, but it was still a scary and often lonely time, so I’m forever grateful to the ward team for helping me through and smuggling me late night biscuits.

A scary episode of acute rejection threatened my progress but was quickly sorted out with some high dose steroids, and I was released two weeks post-transplant. The coming weeks consisted of getting to grips with an array of new medicines (around 15 pills per day initially), learning to walk, wash and sleep with my various appendages, and satisfying my enormous steroid induced appetite. My weight had plummeted with the replacement of my huge liver, and I happily took on the challenge of gaining many kilos of cake-derived weight. The oddest feeling was paranoia that my liver would ‘fall out’ if I moved too suddenly.

A career in clinical research

Several months later, I was able to move back to Sheffield to complete by Biology degree, proudly gaining a First. Other highlights since include having my lovely nephew, moving to London with my boyfriend, and travelling to some amazing places which I appreciate so much after years of not being allowed to go abroad. I’ve also built a career in clinical research, most recently in the field of transplantation at Great Ormond Street hospital, and love that I can contribute to the health of others. The most amazing thing about receiving a transplant is that you never stop feeling lucky and grateful.

I’m now on two types of immunosuppressant medications. My main side effects are occasional tremor, insomnia, and frequent UTI’s – all of which are a small price to pay for otherwise feeling really healthy (from a former PE-avoider, I now love to exercise and be active!).

I’m sure I’m not alone in having struggled this year. Shielding in my tiny flat and grappling with feeling so vulnerable whilst also feeling so well has been tough. However, this is just more of a reason to be thankful for the amazing experiences I’ve had since my transplant, and determined to make the most of the life I have been given. My dedication tattoo for my donor sums it up: Nothing that ends with a gift will end in nothing…

The post Anna’s story: From transplant patient to clinical researcher appeared first on British Liver Trust.