Every few months I had pain in my left side and then it would disappear. After visiting the doctors several times, I was given a diagnosis of irritable bowel syndrome (IBS). The next time I had pain, four months after my original visit to the GP, it was so bad my husband took me to hospital. I was admitted and after a scan, they said it was pseudomyxoma peritonei or PMP.
But it wasn’t.
I was referred to The Christie Hospital in Manchester where after cytoreductive surgery and HIPEC, the histology report revealed I have benign multicystic peritoneal mesothelioma. I went home two weeks after surgery and didn’t have any further chemotherapy. Although I’ve recovered from the operation, I suffer a great deal with pain from scar tissue pain, and rib and back pain too. Looking at my scarred body was, for me, the greatest adjustment after surgery.
So little is known about this cancer and I’m sharing my story in the hope that I can find someone else with the same diagnosis.
~ B
Other survivors stories you might like to read
I found out I had an appendix tumour during my c-section
Oh, there’s an issue with your appendix. We’ll need to get another surgeon across to remove your appendix. There seems to be a tumour-like growth on your appendix and there is mucous leaking around your abdomen.”
A grant from Pseudomyxoma Survivor helped me
I am so grateful for the grant from Pseudomyxoma Survivor which I received. It has helped me financially during such a difficult time.
I’m now on ‘watch and wait’ following a diagnosis of pseudomyxoma peritonei
For me, it all started with blood in my urine and an increase in the size of my stomach. In retrospect, I could feel the mucin moving when I walked. Now I’m on ‘watch and wait’.
I also had cytoreductive surgery and HIPEC with two more lots of peritoneal chemotherapy while I was in intensive care after the surgery at Basingstoke. I started reading your story thinking “that’s exactly the same as me” and then saw you had the same diagnosis – multicystic mesothelioma. My operation was in November 2017, I have issues with my bowels and stomach but am fine apart from that. Happy to chat further if you want to share notes.
Hi Kate!
I was diagnosed with PMP last year 10-21-20. I am recovering from that huge surgery, but I fell good. My only concern is that it will come back. I hope is doesn’t.
I have stomach issues sometimes, I feel that I can not digest my food and I can’t eat acids foods nothing sour. I think I am producing too much acids in my stomach. The doctor prescribed Omeprazole.
I hope you are doing week keep in touch👏
Hi Kate,
I am the lady who’s story you read in hospital. I don’t look at forums much but then I noticed my story, and your reply.
I do hope you are keeping well with not too many problems. Yet again I am up at silly o’clock with back pain. Sometimes I think it is food any food can cause the pain though.
I have not had any more surgery and it has been five years so I am doing well in that respect, within the first year though I was told it had come back and have 2 areas at 1.8 cm in size but they are slow growing. It would be nice to know how you are getting on I hope it’s all positive for you. Thank you for your response,
Kind regards
Beverley