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.

I met my daughter’s Embryologist!


Softly spoken, her voice redolent with kindness. An English lady whom I only saw in scrubs and cap, highlighting her beautiful skin and soft eyes. We had three frozen sperm and one follicle, that is all. It was my last chance. I woke from egg pickup with ‘2’ written on my hand. There was a chance this follicle may contain nothing; two was beyond all expectation! This lady watched them grow and divide, and I held my breath. One divided too rapidly, and perished within days. The other burst into a blastocyst; which was terrific news! This lady wished me luck during the embryo transfer, and gave me the dish my embryo had grown in.

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Eleven months later, I brought my miracle back to meet her, and she held my child in her arms. Years passed, and the scientist moved far away. We became reacquainted on social media. She sent a message that she would be staying nearby this Christmas, and another IVF mum and I planned to meet her with our girls. When I walked in and saw her, I squeeled with joy. My daughter was overwhelmed, meeting the lady whose picture is on our fridge; who carefully watched her as a little embryo. We hugged and looked at each other in wonder. Such a long road from where we started to having a ten year old child! I showed her the dish, and she noted the ‘2’ on the plastic. We had a moment of silence and I appreciated that the women present understood the heartache behind the second number. We talked ‘IVF speak,’ and I laughed that nobody else would understand our conversation!

Our girls both love science, and this lady set up a microscope the other miracle had been gifted for Christmas. We saw extraordinary images of cross-sections of hair, blood and many other wonders. Life-when broken down into tiny segments- really is the most amazing thing! Our girls had to battle for life, and their strength is displayed in their lives today, and shall carry them into their future. We swam in the pool on this hot summer day, the girls playing together as though they are soul sisters. I know that they are. Hours passed as we hurridly relayed what we have been up to; what the girls dreams are for their wild and precious lives.

The odds were mightily against this other mum and I, but this lady helped to see us through, changing our lives forever. How can you begin to thank her for the precious gift she handed us? Humble and kind, I pray that 2017 blesses this lady beyond her wildest imaginings. I hope the same for you all. x

Christmas comes early


Throughout the years of infertility, Christmas had been a lonely time. I made the best of it, putting on a coat threaded with stoicism.  However, when I was decorating the house, wrapping gifts or shopping, there was an acute sense that someone was missing. I couldn’t bear to see children posing with Santa at the shops, and the Christmas music seemed  intent on mocking my friends and I. I joined an IVF support group online, and we talked of how confronting Christmas was, and how we were dreading all the reminders. “Bugger it,” said one lady, “let’s get our trees up early!” She demanded to see photographic evidence, and we dutifully complied. There was magic in the way this act lifted our spirits; we were showing that we were still holding on, to both our sanity and dreams. Some of the ladies tragically lost babies, and others didn’t end up conceiving. Still, we all held faithful to our tradition.

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Late October, my daughter discovered the decorations in the garage and pleaded to be let loose with them. I held her off until November the 1st. Bless her, she counted down the days, and on the first of the month, she ran in, reminding me that it was time.


We played Christmas carols as we unpacked the tree and decorations. As I looked around at the assembled baubles, a lump gathered in my throat. Each represented a time and place, a year or a particular person. We talked of what each piece meant to us as we worked. ” I need to put all the Christmas things up early, like you did when you were pregnant with me,” my daughter laughed. Oh darling, it started way before I was pregnant, at a time when a precious group of ladies met on the internet to give comfort to each other. We still provide a photograph each year, to assure the others that our job is done.

We need sparkle to lift us up. We need to get out the china and silver, the candles and bling. We need to create beauty. It is akin to standing on a mountain top and shouting that you are here. The more personal strife befalls, the more we need to decorate. It was worth all the work to see this little girl beam with excitement. The season of hope is starting. 

Friends for Life


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When one is undergoing IVF, it is imperative that one has contact with people who understand what you are going through. I was lucky enough to meet these two fabulous ladies-amongst many beauties-online during my first tenuous attempts. We made each other laugh and we provided shoulders to cry on. Nobody else understood our acronyms, such as epu and tww. Nobody else could get a take on how emotions could swing from giggles and sweetness to unadulterated rage in moments. Louise came and visited me when I had endometriosis surgery in 2007. My daughter was a newborn when Lou came to my door with flowers and food. She had never seen me in person before, and here she was, feeding me lunch whilst I stumbled to the living room, clad in pyjamas with wild hair. That is the gift of friends, isn’t it? You don’t need to put on an act, nor window dress. When someone can see that far into your eyes as to obtain your soul, what’s the point? We can say anything, and none of us bat an eyelid.

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We have laughed about ridiculous things, and gasped in wonder at each other’s life events. One of these ladies has a dog who has been uncovered to be a hermaphrodite. It only makes the little dog more unique in our eyes. They came over with their hard-won families and we hung out for several hours. I was happy listening to their chatter, bursting in with occasional mirth at how absurd the conversation was. They walked with me through the hell that is infertility, and I am so glad that they are in my life.

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We are planning adventures for later this year. Australia, you have been warned!

Beaches and Visiting the Past


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We met up with some families this week at Bondi Beach. It’s a lovely trip by bus from the city, and you get to meet some real characters. On our last trip, we came across a regal ninety year old woman, dressed to the nines. My daughter still talks about her, and she has provided a point of reference for the possibilities offered in older age. I had put 50+ sunscreen on my daughter, and myself, though I neglected my neck, to my peril. It was cool and overcast when we arrived, a dangerously deceptive combination. It didn’t take long for the sun to burst forth, in all it’s sizzling glory. There was something special about being at Bondi Beach, particularly when you don’t have the hassle of obtaining parking. A bus is the way to go! The kids had great fun, alternating between the beach and pool.

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The next morning, we got up and did it all again, this time going to Balmoral Beach. On the way, we had cupcakes and ice cream at The Classic Cupcake Co. in Double Bay. Oh my goodness! Made from natural ingredients, they were a taste of heaven. I had the Midnight Mint Cupcake.

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As we made our way to the beach, we witnessed a near-collision in Double Bay. An inch more and the cars would have hit. The woman who had nearly caused the accident decided to come into our lane in her ostentatious car. My friend beeped at her to warn her that we were too close behind, and the other driver made some very rude gestures! She was perfectly coiffed, aged in her fifties and old enough to know better. Money can’t buy class! The kids ran to the water, whilst we ordered chips and potato scallops. I smiled as seagulls gathered around. I fancy myself as a Bird Woman, whom understands their secret language. “I will give you a chip or two,” I smiled. “Just let me open the box.” Out of nowhere, a seagull swooped and its claws scraped the side of my face. Another one followed suit, and it pecked my face as it searched for a chip. “Little buggers!” I cried! “P*%$ off!” They were vicious; intent on stealing chips, and there were so many gathered that we were forced to move off the beach. I had never seen anything like it! Normally, birds love me! They followed us to a table, and fortunately, a Pomeranian named Romeo gallantly chased them away. The brave little dog received lots of pats from the kids!

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We caught a train to an inner-city stop, and as we waited for my daughter’s dad to drive us home, I decided to show my little girl where we once lived. It was a semi-detached house in a grand old street, shaded by towering trees. I got a real kick out of pointing out where our Aboriginal neighbour lived, as well as two elderly sisters, now departed from this world. I stopped at the gate to our former abode, picturing myself at 20. I was writing and had started my business here, creating art for shops in Newtown and the city. I had also started my journey of infertility here, having been given a strong injection which was promised to slow the progression of endometriosis (which they hadn’t determined I had). Instead of making me feel better, it caused side-effects so violent that I was bed-ridden for a good year. It was here I feared I would never have my daughter, and it was here I wished with all my heart that I would.

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As I glanced up at canopy of trees, I was appalled that I had ceased to appreciate them properly at the time. They don’t preserve streets and grand architecture as they used to; like they did on this particular street. My daughter was taken with the street art, and the park at the end of the street. As I watched her roll down a hill and perform cartwheels, my throat constricted with emotion. The amount of times I sat on that very hill in that little park… Dreaming of having a child, and of what life might be.

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I sat next to her, and told her of the life I lived long before she arrived. I talked of my hopes and dreams, and also of my fears. I hadn’t been back to the street for many years. I can still hear the mail being dropped through the slot in our door. I can still feel the warmth from the old gas oven in the kitchen I painted turquoise. I can see me. I haven’t changed that much, except that I am weathered. We all get weathered along the way, to varying degrees. Distressed and shabbily chic. I am glad I thought to take her back. I hope that the girl on the hill could feel our visitation through time and space. I hope she could sense that she was going to be okay. I hope she could sense the little girl doing cartwheels nearby. I am glad I got too see the canopy of trees, as if for the first time.

 

 

 

 

People asking about your fertility…


This is a bone of contention for me. I was asked when I was going to have kids continually, for many years. It didn’t help that due to endometriosis, my abdomen swelled and at times I did appear pregnant. At the time I didn’t know that I would require IVF to have any chance of pregnancy, nor that it would be a decade-long odyssey. When people asked about my plans, I felt frozen to the spot. I was already worried about the possibility of infertility, and feeling as though I had to explain myself compounded my fears and pain. It didn’t end when I was undergoing cycles of IVF either. I was regularly asked if it had “worked.” It was akin to being re-traumatized. The pain of it all was overlooked as others made glib jokes. They also commented that I wouldn’t know what business, life nor love were until I had a child.

The queries didn’t end when I had my daughter. Soon after her birth, people started enquiring as to when I was having another. There was advice on not leaving her an only child. There were smirks and comments about how one child turns out. There was criticism and pressure all around me. I almost died trying to get myself prepared via surgery for further IVF. The trauma caused me to plunge into menopause prematurely. Still, the questions kept coming, as did the criticism of having an only child.

I can say with all honesty that as much as I love my child, I applaud that she is becoming an autonomous human being. As each day passes, she is a step further toward independence. I spend 24 hours a day with her, yet we aren’t joined at the hip. I have my interests and she has hers, and we make time for both. At every opportunity, she is off with her friends having fun. It would be co-dependant to expect her to fulfil me, to make me a whole person and to seal a gaping psyche. No child can do that. I had her out of love, with the understanding that she would leave one day. I am the same person I was before, only stronger and braver. I go out more and wont put up with toxic behaviour for her sake as well as my own. I didn’t have her to define me.

I have a friend who is expecting twins. She announced it to me the other day. I had noticed her swollen belly a while back, but didn’t comment. It wasn’t my business. If she was indeed pregnant she would tell me in her own time. She could have had a litany of maladies to explain her tummy, endometriosis included. She already has a few kids, and is tired of the insensitive jokes and commentary at the other end of the spectrum. You can imagine what she is subjected to. It is an extremely sensitive topic for many reasons, and a hugely personal one. If somebody questions you about when you are having kids, offer them no answer if you are uncomfortable. Smile wryly and move away. You already know what it is to nurture, love and toil.

 

Aftermath of IVF


 

 

 

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So many emotions swirl around when you discover you need IVF. You go in search of your tribe, uncovering a plethora of online support. I want to address what happens when-after a truckload of heartache- you fall pregnant. The IVF clinic were my family. I clung to them, and saw them most days. I knew all the staff’s names, and it was familiar and secure, this place of dreams. They celebrated along with me upon my positive pregnancy test. I had one follicle. It was a miracle. Upon discovering that my baby’s heart was beating soundly and I didn’t indeed have a chemical pregnancy, I was released. What the? I am not ready! I was sent off to find an obstetrician, to join the ranks of the fertile I had previously avoided and feared. I had been turfed out of my nest.

I found the same online. I was ever-aware that my friends were struggling, and pondered on breaking my news. Everyone was most joyful, but I knew I didnt have a place on the IVF boards anymore. Interestingly, being on the post-IVF boards was painful too. There were ladies falling pregnant again naturally, with their second and third children. I didnt feel like I belonged nor identified with the group gathered for the pregnancy classes at the local hospital either. They had all travelled extensively and then decided to fall pregnant. In my world, that wasn’t an option. I felt intimidated to be around couples who had timed their lives. When they complained about their pregnancies I felt indignant.

I didn’t belong anywhere in pregnancy. I lost contact with those still going through the process, just as those who had fallen pregnant whilst I was undergoing IVF were lost to me. It is such a painful journey, and whilst you rejoice in another’s success, it is a reminder of your grief. In my mother’s group post-birth, I didn’t feel as though I belonged either, especially when they went on to have other babies. I was in and out of hospital having surgery and tests, praying to have a second child. They were lost to me too.

Oh man, the injections and nasal sprays, pills and procedures, egg pickup and embryo transfers, the two week wait, who could I share this with? Only those who have been to this precipice to insanity could understand. Our bond is so strong that a woman I had never met in person called around upon hearing that I had endured more endometriosis surgery in the hopes of having a second child. She came armed with flowers, a meal and a huge hug for my daughter. There are another set of mothers out there, who have been through IVF and had to leave that world, though don’t fit in with mothers who conceived naturally. I am proud to be amongst their ranks. This journey isn’t for the faint-hearted.

Weird day today.


After a concentrated, delightful weekend, I faced a weird day. One of those days when you feel out of sorts. I got home from pickup, the most pressing feature being getting feeling back through the right side of my body. A hot bath then voltage via my Tens machine! Yes! A missed call from my beautiful publicist, saying that Radio National wanted to interview me for White Ribbon Day. Oh my goodness! I called her back and she said I was to be interviewed live at 5.15pm! I felt a weight of responsibility on my shoulders. My little girl was excited and declared she would hold my hand throughout the interview. What a price to pay. It is a daily price. The pain never fades, in any respect. I am not doing any of this for me. I could have written children’s books from the start! I am whimsical and it is what I relish. I am ill-prepared for my story. It is ill-prepared for me.

My daughter is on her headphones, listening to Katy Perry, and singing her lungs out. We are cool! I feel the weight of responsibility on my shoulders. I am so sorry, so very sorry, for all those that didn’t survive. I am hoping to lead the way for all those that did and wonders what happens next. I am so glad I am here. I understand those that couldn’t hang on. At the end, there is nothing but love. It is hard to rebuild a life. I am still constructing, but after the violence ends, there is nothing but joy throughout the whole process. I am thinking of all who have been told they were nothing, have been abused in any manner possible this White Ribbon Day. Believe me, you are everything. xxx