Hi, I’m Reanna from South Australia. I am 36. My Desmoid Tumor story is like most.
In 2011 I started getting rheumatoid arthritis in my hands, I believe this was the earliest warning sign that I was not so well inside.
Winter 2012 came and I could not shake a cold for a few months, I suspected that I was run down. A wife and part time working mother of two and one son with health issues would be enough to take its toll on the best of us, so I thought. Children are always bringing home germs from school. So I thought no more of it.
A few months later I had severe sciatica down my left side, running from my groin down to my leg.
As a child I also had an autoimmune disease that there was no cure for, but remarkably recovered. It was because of Polio Meningitis I had as a child that I researched it and found that it can sometimes return in midlife, so naturally I suspected this was a possible recurrence.
I rang my mother and cried down the line, telling her that I felt something was really wrong with me that although I was getting physical signs I also had an inner knowing.
I had also suffered with severe migraines that would lead me to vomit and after doing so I would be left feeling better.
The sciatica continued and I could take it no more so I went to the doctor, educating her on my childhood illness. She did no examination and suggested I pulled a muscle? Hmm doing what? Wouldn’t I remember?? I thought.
A few weeks passed and I couldn’t stand the random shots of pain no more, often too scared to even turn over in bed to swap sides or get in and out of the car. This from a woman who chose natural childbirth twice! The pain was similar. I sought out a second opinion and he took a urine sample and requested an ultrasound. I begged him to help me as something was really wrong, however the sinographer did not check my abdominal wall just the groin area, even though I asked her if she could and if the pain down my leg was just differed shooting pain from another location. I looked online at my symptoms (as you do) and suspected Hodgkin’s lymphoma (CANCER), I cried. Why wont any one help me! I thought. I was offered two courses of antibiotics for a suspected Urinary tract infection. For the next twelve months I worked as normal and continued without pain but had a few migraines and vomits again.
December 2012 Christmas day, I sat away from everyone feeling rotten. Unlike me. Again a headache and yellow frequent urine. I was not aware that a tumour the size of a baby was inside me and was strangling my left kidney and infecting it. Too busy working and looking after family and no real success at the doctors previously I put off another clinic visit.
Jan 2013…..My world changed, One night in bed I rested my hand on my left side of abdominal wall to feel a large lump. I saw another Doctor who felt it, and sent me to get tests. Thank god for him!
I will never forget the day they looked at me with pity. “Do you have children?”, they asked. They didn’t even need to tell me, They confirmed what I had suspected. I am just happy that I know its there, it has been inoperable but I am trying alternative treatments, a life style change and some medication.
I have a stent in my kidney and urethra area that needs a change every three to six months.
I will not let this destroy me, I am stronger!