March into Yellow for Endometriosis Month


I visited a friend on the other side of Sydney recently,after receiving a message. She had been suffering excruciating pelvic pains, and tests had revealed that she has extensive endometriosis. I made a massage blend to provide comfort to her abdomen and lower back, and grabbed my folder filled with reams of information- gathered from a decade of research-to give to her. Her story is sadly common amongst endometriosis sufferers. She started her periods early, and from the start, they were excruciating. She was misdiagnosed as having IBS, and the resulting diet and medication did nothing to alleviate her symptoms. To make matters worse, she had extensive adhesions, as a result of a burst appendix at eleven. A laparascopy had been ordered, and though they found a mass of endometriosis, they failed to tackle it. As a busy mum, it had now gotten to the point where her quality of life was massively impacted, and something had to be done. She has endured twenty years of seeing doctors, being prescribed the pill to alleviate the cramps, been misdiagnosed, having nothing show up on ultrasounds, and then diagnosed without treatment. She is facing huge costs in order for a gynacologist who doesnt specifically specialize in endometriosis to have “a go” at operating.

My endometriosis journey began at age eleven, when my periods started. They were excruciating and a gynacologist put me on the pill, which did nothing to help. The disease didn’t show up in ultrasounds, and it was suggested that I had a phobia regarding my periods, and was ‘hysterical!’ For at least two weeks every month, I was in agony, and often had to go to hospital for pain relief. I was desperate for somebody to understand, and tell me what on earth was happening. I felt very alone. Endometriosis was suggested when I was twenty, and I was given a shot of a drug made with progesterone. I was told that it was one of my only options to preserve my fertility. The next year was hell. I bled profusely, my stomach swelled and I had continual pelvic pain and migraines.

Twelve years ago, I sought the opinion of an orthopaedic surgeon about my lower back pain. My spine had been severely damaged at fifteen, and I had quite a few operations on my back to keep me walking. After I explained that the back pain became unbearable the week before my period, and started to ease the week after, it was suggested that I may have endometriosis. I was referred to a gynacologist, and he booked me in for a laparoscopy. During the lap, the disease was found throughout my pelvis, in balls the size of oranges. This doctor burnt off the disease. When I went back to him for the post-op consult, I was doubled over in pain. He told me that I was fixed, and disregarded my concerns about my fertility and ongoing pain. He wrote a script for the pill and sent me on my way. I collapsed a month later, and sought out an endometriosis specialist. When he operated, he found scores of blood-filled cysts and extensive disease underneath the scarring (the aftermath of some of the disease being burnt off). He had to perform a radical excision of the endometriosis, to seperate it from my uterosacral ligaments and ureter, amongst many places.

Straight afterward, I decided to start IVF, as it was the optimal time, whilst I had a clear pelvis. Once again, I faced ignorance regarding endometriosis, and was put on drugs that encouraged it to grow at lightning speed. I had to be carried into emergency and was put in the maternity ward for two weeks, whilst they treated me. I was told that these particular drugs were like pouring fuel onto the disease and striking a match. I changed clinics, and with a different drug protocol, I flourished. Despite only getting one follicle, I fell pregnant and my daughter was born. I was so used to being in a great deal of pain, that I had no idea that I was in the late stages of labor when I finally went to hospital! Apparently, that is quite common with women suffering endometriosis.

When my daughter was a few months old, the disease came back with a vengeance, and I had extensive surgery. When she was three, I had another operation, and nearly lost my life. I was taken back to theatre after I bled out, and had life-saving surgery. As a result of the trauma, I went into early menopause. It has been an arduous, lonely journey, and I would hope that pelvic pain in girls is now taken seriously. Endometriosis should be suspected if a girl complains of severe period pain. Go straight to a gynacologist who specializes in endometriosis. The difference in outcomes can be astounding. My friend is saving to have the surgery to give her back her life. Even with being in a private health fund, the out-of-pocket costs can be in the thousands. I stored my daughter’s cord-blood when she was born, such was my terror that she may be diagnosed with the disease one day. It gives me peace of mind that her cord-blood may one day prove useful in the event of an endometriosis diagnosis. For further information, go to the Endometriosis Association of Australia Facebook Page. March is Endometriosis Awareness month, and it’s colour is yellow. Let’s paint the town this sunny hue, living in hope that our little girls never have to suffer in the manner their mothers and grandmothers did.

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Luminosity


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Last night, we went to Luminosity at Australian Technology Park. It had been a rough week  on many levels, and I dragged my aching bones out of bed to get ready. There was no way I was going to miss an event run by Endometriosis Australia. This wretched disease has taken so much from my life. My battle is over after a vicious ten-year fight from the time of diagnosis until I went into premature menopause. My fervent wish is that our girls don’t suffer as we did. My daughter and I walked into a foyer bustling with activity, yellow balloons and friendly faces.  I caught up with a dear friend, Naomi, who had been an inspiration to me  before I started my IVF journey. We embraced, and it was felt on a cellular level. I will never forget visiting her after she had yet another surgery at RPA, a lady of dignity, reclining in a chair and smiling in spite of her pain. It was the first time we had met in person. I met the marvellous Donna, who had also organized the Luminosity event in Melbourne on the 7th March. The volunteers were all awe-inspiring.

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I sampled the most delicious raw food, and we got our fluoro paint on. I made  friends with women who shared their endo journey’s and we swapped numbers at night’s end. My daughter chased boys around, and put me to shame with her hula-hooping.
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We entered the main room engorged with music and neon lights, and I basked in the glow of over a hundred people who have been affected by this disease. They were glowing for real! Some had endured twenty years of agony, had their bowels resected, had been on  a litany of powerful medications, had been burnt, lasered, cut open and had IVF. They were heroines at Luminosity. We watched amazing performances, even an acro-yoga display. With a fused spine, I wasn’t bendy, but I loved the stretches. I loved feeling a part of my body, at one with it. A body which had harboured disease the size of oranges, and had the consistency of elastic bands.My daughter thanked me for the lovely girl’s night she had experienced. I promise you, little one, that if your tummy aches when you are older, I will be watching. I will get you the best help. I pray I don’t have to. To find out more about endometriosis, or to donate either time or money, go to Endometriosis Australia.

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