Hi,
This October 2023, will mark the 25th 'Anniversary' of when, at the age of 26, I was wheeled into Theatre for an Operation that lasted 7hrs.
I had 8 months previously been told that there was nothing wrong with me when I kept going & phoning the Doctors as my Period (as I thought it was) came in January of that year, 1998 & didn't go away. In those days People didn't know the signs of Cervical Cancer although the Doctors did, which has been a source of great anger that I live with everyday.
Eventually I got a Hospital Apmt for the 2nd October that Year & when I went, I didn't get out for nearly a Month. The Tumour was visible to the naked eye of the Consultant on my Cervix & after more Scans there were signs that it had spread. I had over 300 internal stitches, 28 external stitches, tubes draining blood & a catheter (for 8 months).
The Pathology came back confirming that the Cancer had been in my Womb & in the Tissue that they 'scraped' away from my Pelvis. This lead to a debate as to whether I should have Chemo & Radiotherapy or just Radiotherapy. My notes were sent to the Royal Marsden & the decision was made for me to have 5 wks of Radiotherapy.
As I'm sure a lot of you know, there began years of follow ups etc. The last MRI I had of my Pelvis, about 10 yrs ago was reported on saying that there were, 'Changes to the bone structure in the Pelvis. Radiation related. No Treatment'.
About 8 yrs ago I started to have terrible pain. This pain can be on my right side, left side, across the top of my abdomen & through to my back. I am on various Pain Medications. I had to use my little private Insurance Policy to get a Colonoscopy in January last year. I was told that the damage to my left descending Colon was extremely significant. It had narrowed to the point that I was at risk of Bowel Obstruction so I was told, 'When you can't stand the pain any longer come back & they would have to fit a Colostomy Bag'.
I was horrified at the thought but as the months progressed, I was having more & more 'accidents' & the pain was awful. So I had to come to terms with the fact that the time had come to go back to the Consultant with the anticipation/dread that a Colostomy Bag was the only way for the accidents to stop & maybe even reduce the pain.
To my horror when I went back in July last year, I was told that my Bowel was too damaged to even fit a Colostomy Bag. The nerve damage was too great. I was told all that could be done was to take Laxatives every Morning & I was not allowed to eat any type of Fibre at all. A Low Residue Diet.
Since then, over a year later, I am more or less Housebound. I'm in pain everyday, have to wear what I call my 'Nappy' 24/7 & have no help from my Doctor whatsoever.
It was my Support Worker from a Charity that found the PRDA for me. I didn't think there was anything out there for People suffering in the same way as myself.
I'm glad I found you & hope I haven't bored anyone too much. I just felt that if I was to join & hopefully talk to other People like me that my story would be helpful.
Thanks for reading.