Maneek’s story: “A doctor said the word ‘liver’ which confused me because I don’t even drink”

At first Maneek thought the pain she was experiencing was IBS, but after 19 excruciating hours she went to A&E and began a long journey to understand, and come to terms with, her diagnosis and treatment. Thank you for sharing your story, Maneek

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.

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.

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