Whose endometriosis story will unfold across this page?
I remember the first day I got my period, I was only ten and half years of age. My parents were Maltese immigrants that worked the land as market gardeners. Our father sprayed a lot of chemicals around the market garden to control pests. The smell of the spray was awfully strong. I remember my mother and sister vaguely telling me about what periods were but when they did arrive I was in a state of shock. My mum wasn’t home on the day and I was too embarrassed to tell my older sister, so I carefully rolled some toilet paper into my underwear and fled for the day to the back of the farm and walked the back of the property where the great grey gum trees grew. Somehow I felt at ease there. Returning home at the end of the day I told my mum about the blood I had discovered that day. She quickly gave me a pad and ran through what would be happening to me each month. I was a little terrified but again too embarrassed to share my emotions. It was the way with my family, they dismissed any emotions towards pain and ongoing health issues with me – this made me feel sad and isolated.
Throughout my teenage years I had regular periods with the normal symptoms, a bit of cramping and good bleeding. Until I reached my mid twenties nothing really happened regarding my periods.
During my early twenties I studied Visual Art and majored in print making. I was exposed to a lot of harmful chemicals that I believe was another part of my suffering. Slowly my periods became irregular, slowly they became more painful, I felt tired easily and always felt weak and very vulnerable around the time my period was due.
It really changed at the age of thirty two. I was out bush walking with two dear friends out at Ben Bullen (Gardens of Stone National Park) one glorious but cool spring day. We had never been to this place before, keen bushwalkers we set off the day to discover a new place. I had been feeling a little stressed (from work and personal issues) and tired on this day. Getting out would be good for me, some fresh air and to be in good company – wonderful I thought. We found a beautiful ridge line that we scrambled up and then walked into a deep gully – very beautiful and I was feeling much better being outdoors. We had been walking for a while and got to a point where we could either climb up a rock face to head back the car or turn around and take the same route we came. I decided to begin climbing, I climbed about 6 -7 meters high and all of a sudden without any warning I felt my life energy being zapped out of me (just like when I ovulated). I started to fall, I closed my eyes and concentrated on my breath (as a trained meditator, I thought that was the only thing I could do because I thought I was going to die). On my way down, I hit a branch with my left arm and then my pelvis hit the ground. I couldn’t move and I had broken half of my body. None of us had mobile phones and so my friend left me with my other friend while he went for help. Two and half hours later a helicopter was flown in and a paramedic was airlifted down into the wilderness, where I was injured. The helicopter was running out of fuel and was not able to airlift me out until the next morning. I was carefully placed into a skidoo and left overnight in the wilderness with my two dear friends, a paramedic and two ambulance officers. It snowed that night and it was recorded that the morphine that was being injected into me had frozen. I had broken my pelvis in two places, three ribs and a wrist. It took four months to recover. The pain of this accident was unforgettable.
Six months after my awful accident my periods changed rapidly. After ovulation without any warning I would experience the most excruciating pain in my abdomen. I could be sleeping, walking my dog, driving my car, whatever I did I couldn’t control the pain. I doubled over and rolled on the ground screaming for help. This went on for a year and half until I experienced my first laparoscopy with an emotionally inept gynaecologist. After my first laparoscopy I was in the same amount of intense pain. I was told by this gynaecologist, in a belittling voice that everything was fine, I was not fine I was in large amounts of pain and needed help. Immediately when I was not supported by this doctor, I hurriedly got onto the internet and found an endometriosis group in Australia. On this website I found a leading surgeon in Australia who specialized in endometriosis (who has been throughout the past six years an incredibly professional and supportive doctor). I had another laparoscopy but the pain had only dissipated from a level 10 to about a level 8. (10 being the roll on the ground scream for help.) The surgeon then helped me further and got me use an IUD which helped immensely with pain management.
Last year my husband and I were married and we decided to start trying immediately to have a baby. After ten months of trying we were not successful. I began to experience a lot of pain again and soon became very unwell. I turned to naturopathy, which after six months has helped somewhat with pain management. After some tests we have found that my husband also has problems. We are now in the midst of IVF and infertility seems likely.
My husband is the most supportive, loving and caring man I know. Without him and my little dog, I would have been left on my own to deal with this awful disease. Life is hard but I never imagined it would be this difficult. We take one day at a time and if I need to rest, I rest. I have small goals and I challenge myself to keep moving when I can. Being positive and turning the pain around so it does not overpower me has taken a lot of work. Taking care of myself is my first priority.
Week 1: Leaf Lady
Red, amber, yellow, orange and gold.
Change, adjustment, replace and transformation.
Pain, pressure, heat and agony, body, ouch and then rest.
Week 2: ?
Week 3 i): The Innards
Warning: Some people may find this image confronting
As the pain increases I look inwards to see what is happening.
Deep breath, tight throat, spasm.
What is happening inside – internal bleeding, gross pain, lightening bolt spasm.
Deep fear, deep breath, try to let go continously.
Compassion for oneself, compassion for the disease within and compassion for those who are suffering the same and more.
Concentrate, deep breath and keep letting it go.
Week 3 ii): A Resting Place
Please click here to view a larger copy of image: A Resting Place
Week 4: Grief
Please click here to view a larger copy of image: Grief
Week 5: Peony
Week 6: Boat
Week 7: Scribbly Bark
Week 8: Letting Go