Fay shares her story
I was extremely lucky in my case as the PMP was only picked up on an ultrasound scan I was attending for an overactive bladder. There was a shadow the doctors initially thought was a cyst. Following appointment after appointment at Clatterbridge Hospital and Arrow Park Hospital to diagnose this, CT scans showing the cyst getting bigger with each scan and a final scan showing fluid in my pelvis, the doctors thought I had a burst cyst. An MRI scan showed the fluid still there after 2 months where it should have been absorbed by then should it have been a cyst. I was finally referred to The Christie Hospital in Manchester where straight away doctors diagnosed it as PMP. I was told I would need a full hysterectomy as well as gall bladder, appendix, tissue behind my abdomen scraping of my liver and maybe bowel all removed and then a hot chemo rinse (HIPEC).
Having just turned 28 with no children yet, I chose to keep my womb and my left ovary and underwent hormone treatment and had my eggs frozen before to the operation.
The operation was successful and I cannot thank team at the Christie and my amazing family enough for their skill hard work and on-going support, It was so strange being told I was going to need surgery when I felt fine! I was so lucky it was caught so early on in an unrelated scan!!!
I was up and out of hospital after a week and a half and went on to run my first marathon in 2014! I am a year and a half into my 5 year follow up stretch, where I have a CT scan every 6 months to ensure the PMP does not return.
In case you missed it...
Don’t give up hope!
On February 2nd, 2011, my appendix burst and I had an operation in Burton-on-Trent. I was 36. On March 7th, I received a letter from the hospital saying I’d missed a follow-up appointment for a suspected case of PMP. I hadn’t received the original letter and just what was PMP? I looked it up on the internet.
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.
My pseudomyxoma peritonei was discovered during a proctocolectomy
My PMP was discovered during a proctocolectomy¹ for what was thought to be an uncontrollable flare-up of Ulcerative Colitis.
This is me 100 percent. I was pregnant with my very first child during it all!!!