By Fiona Coleman
Hello, I am just sharing part of my story as it is a very long one, I am in my early 50s now. Thankfully I don’t have the pain that I used to have before I had major surgery, but just suffer with many adhesions left over from the endo and surgeries I have had.
I am the youngest of identical twins. Both my sister and I started our periods on the New Year’s Eve following our 9th birthday. My sister wasn’t too bad with her’s, but from the very first one, I was in agony and the bleeding was really heavy with lots of clots. My periods would last at least 7 to 10 days. I remember being brought home by my mum from church on a Sunday morning because in the space of half an hour, the bleeding had embarrassingly soaked through my winter clothes (we lived in the UK). My mum had to stand me in a bucket whilst she cleaned me up.
I would faint often and had many days off school because of the pain and the heaviness of my periods. There were many times I could not sit down because of the pain in my bottom and then I would also have intense pain at ovulation time. I can remember crying out in pain even at school. The analgesia choice then was soluble aspirin.
My Mum would often take me to the doctor who was very old fashioned and didn’t offer much except telling me to grin and bear it! Four years later our GP died and we got a new younger one. He put me on the pill (oral contraceptive pill) at age 13, and I was on it for 10 years before I had any investigations into my suffering. I still had my periods on the pill and still had terrible pain, the bleeding wasn’t as heavy as before but still bad.
Ten years later after lots of time off school, I was in the middle of my nurse training and had made friends with the sister on A & E. She had Endometriosis and put me onto her gynaecologist. He was brilliant, he had me in the next week doing a laparoscopy and excised lots of endo. He told me I would have to have more laparoscopies in the future with more excisions, and probably bowel surgery. He reassured me that my fallopian tubes were both okay, for now. I had a diagnosis after 15 years of suffering.
My mum had never given up on me and had persisted with doctors throughout my childhood. No one in our family had endometriosis though. Sadly, just shortly after my diagnosis, my mum died from breast cancer.
I was married and became pregnant for the first time, but lost the baby at 12 weeks, this was just before my diagnosis. I got pregnant but lost the second baby at 19 weeks through DV. I managed to complete my nurse training with an extension of 6 months due to having my appendix out the day I was due to sit my finals.
I had another laparoscopy and laser surgery to blast some endo deposits. That marriage ended but I remarried and managed to get pregnant. I got pregnant three more times, all ending in miscarriages at 9 weeks. Eventually I got pregnant 2 weeks after another lap that was excision. This pregnancy was successful, I got my daughter who is now 24, sadly she has endo too. I had several more laps and excisions. That husband left me when I was giving birth to my daughter at age 29, but I did meet a wonderful man from Australia and moved here 3 years later.
I got pregnant but sadly lost that baby too. Then I was put on Provera for 6 months, not nice. I found the treatment here at that time, quite backward. We couldn’t get pregnant then for a long time so I was going down to Brisbane for an IVF appointment. The day before, I did a pregnancy test and it was positive! This pregnancy was awful. At 18 weeks they thought I was having contractions and kept me in hospital. The pain was terrible. At 20 weeks they asked me to choose doll’s clothes to dress my little girl in, as they thought I was losing her. I stayed in bed with the foot of the bed elevated, I was put on medication and kept there until 36 weeks. I was allowed out of bed then. All through the pregnancy I told the doctors I thought things were ripping and they looked at me like I was stupid, when I went into labour, I was still going 2 days later and stuck at 6cm. When my baby girl went into distress, they did a Caesarean and could not believe the mess they saw.
The obstetrician /gynaecologist could not comprehend how I had maintained the pregnancy in such a messed up pelvis. I was just so happy to have my second daughter who is now 19.
You name it, it was adhered to itself. The gynaecologist actually apologised and said it probably was ripping that I was feeling. They said I would need extensive surgery later.
I suffered for 4 more years on morphine until I got cancer of the cervix.
I was flown down to Brisbane the day after diagnosis and admitted to the oncology ward. I had a fantastic gynaecologist and colorectal surgeon who spent 9 hours resecting and excising. I had a total hysterectomy and both ovaries removed, part of my liver, left kidney and ureter, partial bladder resection and partial bowel resection, I escaped a colostomy. I had a cardiac arrest on the table but made it. I was in hospital for 3 weeks, thankfully my family were staying down there too so that we could be together.
15 years later I don’t think I have endometriosis any more only pain from the many adhesions I have developed.
That was my long story cut short!