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
In case you missed it...
I was devastated at first as I am a single parent
Before I was diagnosed, I suffered from abdominal pain and tiredness. I felt full quickly after only eating small amounts. I saw various doctors who gave me a diagnosis between appendix, ovaries and bowel but no firm diagnosis.
The disease was actually growing out of my belly button!
I do an exercise class and I was having trouble keeping up and my belly was growing with no changes to my diet. In my head, I was thinking that was just signs of perimenopause and that was my new figure. Some women just have a muffin top at 44, right? I was also going to the restroom for frequent urination. I was under the care of a urologist for that at the time of my diagnosis with pseudomyxoma peritonei or PMP.
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
Hi Beverley
I have been told I have PMP but my scan and larascopic reports read very much like benign multicystic peritoneal mesothelioma. I’m waiting for my sample results to come back but in the grand scheme of things I guess both illnesses have the same downsides when it comes to treatment and recurrence.
I am really grateful for you sharing your story and wish you all the best with your recovery.
Hello, I have also just been diagnosed with multicystic mesothelioma, after being given lots of wrong diagnoses from ovarian mass to PMP (pseudomyxoma peritonei). After being referred to The Christie, I have been told this finally and I am to be transferred to Basingstoke where they will remove my liver, my spleen, my bowel and all reproductive organs. It’s safe to say I’m ****ing myself. After all the other things it could possibly have been and me scaring myself thinking I was going to die, I will accept this diagnosis as I know it’s not a death sentence. Still sucks that it could reoccur but I have babies to think of.
Some people say it could be related to asbestos, there’s a grant you can apply for, don’t know if our condition apply? Have any of you had this?
Kind regards
Kimberley
26 years old with three beautiful children – lucky I had them young x
Hi Kimberley,
I received the same diagnosis and underwent the operation nearly seven years ago. Please feel free to get in touch – i’m happy for admin to share my email address with you.
I hadn’t heard about a grant, though I am aware of links to asbestos. Hopefully someone will be along to give you further information.
Hope to hear from you!
Gill
Hi Kimberley, there is a government compensation scheme for mesothelioma patients as it is caused by asbestos https://www.gov.uk/diffuse-mesothelioma-payment BUT opinion is divided as to whether multicystic mesothelioma is caused by asbestos. I don’t know where you live in the UK but I would strongly recommend you get in touch with one of the asbestos charities who would be able to help you fill in the forms. I was helped by HASAG https://hasag.co.uk/ If you get the lump sum, you are then also entitled to industrial injuries disablement benefit. I had my operation at Basingstoke, they really are the experts and will look after you. Happy for you to contact me if you get my email off the administrators.
Hi I’ve just been diagnosed with with PMP which has spread and caused mucinous adenocarcinoma, Basingstoke don’t want to do surgery until I’ve had 6 rounds of chemo, having my second one tomorrow, but I’ve been given a Prognosis of 18 months to 2 years, so I kinda feel like they aren’t intending to do the operation anyway.
Hi Lydia – sorry to hear about your diagnosis. Did Basingstoke give you that prognosis or a more local team? It sounds like you are going through a lot at the moment.
Thanks Susan, no it was my Oncologist that gave me the Prognosis, at my local hospital, I haven’t heard from Basingstoke myself but my Oncologist has been in touch with them about me, which she’s discussed with me.