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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Health food, enough already!


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I worked in two health food shops as a youngster. One was in the heart of Sydney. The fellow who ran it had a toupee, and an eye for the ladies. I grew to loathe oat bran, after lugging five kilo sacks into the shop. I would sit out the back, and bag up 250gm of the wretched stuff. It was the hottest item around at the time, sold to executives in need of fibre and the miraculous lowering of their cholesterol. Little effort required and so much gain!

Oat Bran
Oat Bran

The sack cost around $8 per 5 kilo, and was sold for $10 per 250gm bag. You do the math. People felt devout and in control as they obtained their stash. I went on to work for a naturopath who drove a gold Mercedes at sixteen.

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She owned a health food shop, consulting out the back. I first saw her as a patient, and she diagnosed me as having candida, ordering a plethora of expensive remedies. When I started working for her, I noted that 100% of her patients were diagnosed with candida, and given the same costly script. I questioned her on its prevalence. Big mistake. She blew like a loose lid on a slow cooker!

I had been helped by natural therapists at times, and they certainly aided me in my recovery from the fall. However, I did not in fact have candida. I had raging endometriosis, which, if treated at the time, wouldn’t have become the monster it did. I consulted a women’s health clinic some time after, and they failed to diagnose it too. I was given generic bottles of uterine tonics which did nothing. As the disease progressed, and the pain and infertility issues became intolerable, I became desperate. If you had told me to coat myself in cow dung, I may well have. Endometriosis was then diagnosed. By then, it was the size of oranges, adhering to scar tissue from my various surgeries. There is a time and place for alternatives. My advice is do your homework, seek recommendations, and go to someone who doesn’t want to commandeer the show, nor make elaborate claims. Do you know what happened to the revered oat bran? Neither do I. It was a craze. We would sell out by the end of business. It has been replaced by other remedies.

I weaned myself off the oils and potions. Some had been costing $400 a month. You know what happened? Nothing. I felt no different (only richer).  I eat well, ensuring I get enough fruit and vegetables in my day. I walk and drink water. Simple and realistic. I am doing okay. Once you have worked in the places who make a living out of the health food industry, it is rather akin to seeing behind the wizard’s curtain. A bit disappointing. As I am maturing, I have come to understand that it is imperative to partake of things which make you feel good, not because you feel you should. Health is partaking in a hearty meal with friends, and going for a stroll in the sunlight. I like my quinoa flakes and peppermint tea, but then again, I also adore coffee and dark rum chocolate. Enjoying  your life is paramount. Do what makes you feel good deep into your bones.

#ProjectPositive,September 15th. The Biggest Thing I’ve Overcome.


The biggest thing I have overcome is…

I don’t have a personal favourite. Each time I overcame trauma, it was humbling,  surprising and wondrous!

Child abuse. Being told that you are a slut, being labelled as stupid and being hyper-vigilant. A pleasant occasion, with cordial conversation and laughter makes such a child tense up. You sadly know it is a harbinger, ringing in screaming and fighting. As a result, I grew up extremely aware of my surroundings. I can tell you who is standing in the next paddock after a quick sweep of an area. Sensitive to noise and environments. There were times I wanted to die. Times when I felt I would never recover, nor feel whole. I went back to each place of trauma, wrote about them, took pictures. I was in fact saying that I was here, and I survived. Throughout this period, I learnt  a lot about myself and why I respond the way I do to situations. Don’t like loud knocking at your door, nor talking on the phone? There is a reason for that and its  a perfectly normal response when given your history. Need time alone to process and unwind after a social function? Again, perfectly reasonable. When I started to understand why I am the way I am, with my little “things,” I began to heal.

Being told I was stupid. I lost so much time at school in primary and high school, due to being drugged or being  in hospital. I was told I was stupid and wouldn’t amount to anything in Year Seven. When you are told often enough, you tend to start believing it. They were wrong. A kid who isn’t clever couldn’t have survived the years that followed. I left school at fourteen, when I was put in the clinic, and was extremely nervous when I was signed up to Distance Education by my surgeon when I was fifteen years of age. I was in my rotor bed when the first pack of lessons arrived. To my astonishment, not only did I enjoy it, but I was also good at it. The teachers were encouraging, and I knew I had been lied to about my intelligence and ability to learn. I am so grateful that I had the opportunity to find out. Don’t believe them when they label you, please don’t absorb it!

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Eating disorders. I had no control over anything in my life. I couldn’t make sense of schoolwork, as I had lost so much time. Where to find a modicum of control? I would alternate between bulimia and anorexia. I thought if there was little left of me, I could disappear. It was harsh and brutal. Walking for hours with an empty belly. Swallowing vomiting tinctures designed for victims of poisoning. Being happy when getting my stomach pumped as I would lose a kilo or two. It was savage and hard. Learning to love and appreciate this body took years. It was hard to look at food in a normal manner again. This is why I don’t hop on scales now, and make myself eat regularly.

Endometriosis. This one brought me to my knees. After having survived such darkness, I wanted a baby with all my heart. It was the carrot I clung  to. Since age eleven, the pelvic pain had been agonizing. A proper diagnosis got left behind in the pressing need to stay alive. I was only officially diagnosed in my twenties. Hospitalized regularly, I was always placed in the maternity ward, a cruel and unusual way to be treated. The years of drug treatments and surgeries were tough. IVF was beyond hard. I went to ground, shutting off completely. That it eventually worked, was astounding to me. I had wanted more children, and nearly lost my life in the attempt. I grieved for quite some time, before finding peace.

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Surviving it all! I am still amazed by the dawn of each new day. Amazed that I am here to see it. To have survived is extraordinary. I have my medical notes, and at times, the prognosis was grim. Here I am, an intelligent woman in her thirties, who smiles more than she frowns. Who plans for the future, and has left the pain behind. There was no magic secret I uncovered. It had to do with giving myself a break, understanding myself on a deep level, and kindness. With self-love and kindness, the healing begins. You define who you are, not them. xxx

 

 

24 Hours


Yesterday I woke up feeling ill. My specialist has put me on a new medication, and I know I have to give myself time to adjust. It was bitterly cold and the sky was grey. Someone had smeared the sky with charcoal. My stomach was distended as the endometriosis grew, fed by this new drug, which I need. “Look at the big picture, Raphie,” I urged. Always look at the big picture. I felt the urge to scream from the pain, and the desire to clean and discard. I did both. Why the hell do we keep the things we do? Old numbers on scraps of paper, old ways of being. I put an angel who had lost her wings into the pile of donations. I had stored my maternity clothes in a special drawer. I looked at them, and wondered why I had held on so long. My subconscious must surely have been seared every time I went past that drawer, even if I was unaware. As I washed up, I exhaled heavily. A burden had been lifted. I then heard the ‘snap’ of my spine as I was dragged along the ground after my fall. It was as distinct as though it were happening then and there. “Oh my God!” I cried, bursting into tears. I sat with the memory a while. I assured myself that it was natural to have events, sounds, smells and more clamour to the forefront on the anniversary. On White Ribbon Night.

After school pickup, a friend popped in. She hugged me, and said how sorry she was that today was “the day.” It meant the world to have it acknowledged. This lady knows all about “those days.” The pain ramped up, and I was in a holding pattern of agony, fevers and chills. There was to be a meeting of gentle souls around the corner that evening, and I determined that I would go. I didn’t want to be home with my memories. The hostess is a vegan, and she had made this delicious main meal.

Tofu and nuts.
Tofu and nuts.

We laughed and talked about foster kids, homelessness, travelling, art and beauty. We sipped coconut water and made sure room was saved for this.
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I didn’t stay late, and I gave my gorgeous friend a tight hug and thanked her. My mind had been summoned to wondrous places, leaving that dark building on a winter’s night. The pain was softened by the graciousness of a nourishing meal and a room full of good people. I went home and hugged my little girl, smoothing her tendrils of honeyed hair. “May your world be markedly different, my darling.”

The IVF Support Crew


Eight years ago, I discovered endometriosis had robbed me of the ability to conceive naturally. When one hears the dreaded words, “you will need IVF,” one reels. They rattle on about syringes and doses, and side-effects, and you freak out some more. I went searching for my tribe and came across an IVF support group on Yahoo (those were the days), and found no topic off-limits. Nina, the moderator, was the guru of IVF. If you wanted to know anything, you asked this chick. A veteran, as were many others. They had battle scars, but they weren’t done fighting. I shared that the doctor mumbled so much at appointments that it rendered him incoherent, and  I would have to beg the secretary to come in to translate. We laughed about the “wand monkeys,” and the hideous internal ultrasounds, and how big our bazooka’s got on the drugs. We laughed at having to take an esky everywhere we went, and regaled each other with stories of having to explain why we were snorting and shooting up in public toilets. They became my advocates, and my battles with beastly staff were theirs too. “I would have blown a gasket at the rude bitch! Demand your money back love, and charge them 10% interest if it’s late like Brenda did. Build up those little arms so you can sock her,” wrote Shell. I typed back, “My plan is to make millions, invest in the fertility industry, and send free drugs to everyone.”   I had three disastrous cycles in a row, and the girls urged me to swap clinics. “Don’t give up!” they begged. We left the first clinic, and they were with me all the way. Finally, I was able to go to egg pickup. My girls, not demure in the least, had this reaction, “I don’t believe it Raph, you are finally having a trigger shot! Holy Shit! Sending you the stickiest, bestest, growingest, great-fertilizingest thoughts I can.” We all wondered what it would be like to simply pee on a stick to confirm a bit of horizontal folk dancing had worked. I got advice on what level I should spin the drugs to, in order to get the best follicular action. I felt rather naughty, upping it from what the experts advised, but it felt so right. I got one follicle, but it was a good one, housing an egg that became my daughter. I am still in touch with my mad mates. Emails with titles like ‘We found the sperm!’ after surgical extraction were commonplace. They wanted me to write a children’s book about the amazing travelling sperm, after I shared the adventures my husband’s three sperm went on after we swapped clinics. He strapped the large canister into the front seat, stopping off at his building site, on the way to the new place. If you are going through IVF, find yourself a support group, and you will have  best friends for life.

Endo to end all Endo’s.


March is Endometriosis Awareness month.P1080589 Endometriosis and infertility were the worst experiences of my life. This from a lady who was thrown off a building as a teen! I started to experience pelvic pain at eleven years of age, and often ended up in hospital. I would vomit and scream from the agony. Pethidine rarely touched the sides in casualty. I saw gynecologist’s who said the pain would settle, and I had ultrasounds, which showed nothing. I was on the pill by fourteen, which did nothing to settle the pain. I wasn’t diagnosed until my mid-twenties. I saw a new spinal surgeon and mentioned that my lower back and sciatic pain ramped up the week a period. He asked my GP to refer me to a gynecologist with the belief I had endometriosis. Indeed I did. It was the size of oranges, clumped together outside my bowel, bladder, and pressing against my sciatic nerve. The first surgeon burnt it off, which caused blood-filled cysts. Within six months, I was in such agony I had to see an endo specialist for further surgery.

I was told I was infertile, and I declared I wanted to try IVF immediately, whilst I had a clean pelvis. The IVF clinic knew little about endometriosis, and the drugs I was on made it flare up, rather like pouring petrol onto a fire. I ended up in a maternity ward for a week on morphine. I had two more cycles with this particular clinic, before changing. The new place honoured my gut instincts as to what drugs I should be on and those I couldn’t tolerate. I fell pregnant! I felt the best I had since I was eleven, even with the extra pressure on my fused spine. Within months of my little girl being born, the endometriosis came back. It was everywhere. I had my daughter’s cord blood stored when she was born, in the hope that she will be spared this cruel disease. They are discovering genetic links and also that it is an auto-immune disorder.

I had more surgery, then went onto drugs to trick my body into thinking it was in menopause. With already weakened bones, I slipped over and broke my back in three places. I had to give up the medication. I spent thousands on alternative therapies. I exercised each day,and had a vegetarian diet but despite all my efforts, it raged. I wanted to give my daughter a sibling, and to feel as well as I had when pregnant with her. In 2010, I went in for more surgery. The doctor severed the main nerve to my pelvis, hoping it would provide pain relief. Once again, it was everywhere. I woke in my room, felt dizzy and fell to the floor. I looked at my stomach and it was beet-red. My blood pressure had dropped rapidly by the time the nurse ran in. I was haemorrhaging. I was pumped full of blood and doctors stayed with me overnight as I wasn’t stable enough to go back to surgery. The next morning, they operated and they found the bleed. It was a slow recovery, and a traumatic one.

When I saw the surgeon, he retrieved a photo he had taken of my fallopian tube, wondrously ovulating. A little egg was present, perfect and waiting to begin its journey. I cried. You see, straight after surgery, I went into premature menopause. I couldn’t have another child. My bones are fragile, and I face twenty years of not being exposed to natural protective hormones. If I take HRT, it could well feed even a pinprick of endometriosis in my pelvis. Endometriosis has made me really unwell at times and brought me to my knees. I am determined that my daughter’s generation shall have better treatment options, be diagnosed promptly, and have better outcomes. Let yellow rule the month of March! P1080587

Early Menopause



“Aren’t you lucky? No more periods!” I have heard this many, many times over the past few years. The reality is quite different to the freeing experience other women believe it to be. It is hell. I have been thrown off a building, had my spine shattered, and a cacophony of other traumas have been inflicted on me. Early menopause is the worst, I can state without compunction. Endometriosis led me to have my IVF/ICSI daughter. She is our joy. I had one follicle, despite being on high doses of hormones that encourage many eggs to come forth. She was one of two eggs in this follicle. Both fertilized, but her twin perished before embryo transfer. We so wanted to give her a sibling. After our dark pasts, we wanted her to have blood family, as a kind of buffer in life. My last endometriosis surgery saw me almost bleeding to death. I was rushed back to surgery the next day, after having the doctor warn that I could very well die, and that if the bleeding was stemming from my reproductive organs, I would need a hysterectomy to save my life. I prayed that these organs would be saved. I wasn’t willing to give them up just yet. The bleeding came from blood vessels near my belly button. I was so grateful to have been spared a hysterectomy. When I saw the doctor for a post-op consult, he showed me a picture that still holds me spellbound, and renders me heartbroken. He couldn’t believe it himself. When he went in, he captured the moment a healthy egg was being released from my fallopian tube. It was white as snow, determined. He reassured me that I was ovulating, and that IVF was able to go ahead. We were thrilled. We saved, and we planned. I had another period, and then realized that the following was late. I couldn’t bear the thought that my body had shut down as a result of the trauma I had gone through.

 

I started to feel ill. Constant migraines, vomiting, dizziness, intense sweating and body heat. I couldn’t remember things, nor could I get my thoughts together. I put on weight virtually overnight. I looked puffy. My hair became like straw. I saw my IVF doctor, and it was broken to me that my FSH levels were double that of a normal, healthy woman in her early thirties. “Unless it comes down, IVF will not be an option,” she said sadly. I was put on strong HRT, in the hopes it may reverse what was happening. I put on two stone in a month, and had abscesses in my breasts. I had to be taken off it after two months. It had failed. I had two tumours on my face, and one on my breast. I had thought they were warts, but a dermatologist referred me to a plastic surgeon for their removal. We all concurred that the hormones had fed them. The day I found out whether these tumours were cancerous, was the day I also found out I was in full menopause. I was thirty-one. I sobbed from the depths of my soul as it was explained the health problems which can occur as a result of going into menopause so early. I already had fragile bones, as a result of my fractured back, and the many surgeries I had endured. A bone scan found I was now at high risk of neck fractures and forearm breaks, among other areas. I couldn’t take HRT after having had the tumours, to deal with the hot flushes and many other symptoms. I felt so very alone. The women I knew were falling pregnant, extending their families. It was never discussed with them, nor did they ask. People couldn’t understand why I was sick all the time. They certainly couldn’t comprehend the mind-shattering depression. I felt guilt for my little girl. She wanted so much for me to have another baby, and my heart broke when I saw her joy at holding her friend’s siblings. I felt as though my body had failed. I tried many alternative health practices, and spent thousands on herbs, potions etc. I was so delighted when I saw a spot of blood that I told everyone that I believed a period was beginning. It ended up being a normal part of menopause. I was still sent for regular FSH tests, and the last one was in the 90’s. It should be under 10. We booked a holiday and left town whilst I came to terms with the diagnosis, in its entirety. It was a time of deep grief, not helped that I wasn’t sleeping. When I say not sleeping, I mean I went weeks without having more than one hour. I felt old before my time. I had a five-year old, yet I felt eighty. I had nobody to talk to about any of it. The loneliness was unbearable.

Since the start of 2013, I have taken matters into my hands. So much has been out of my control, and it feels good to be proactive about what I can do. I go to the gym daily to be in the best shape possible, and do weight-bearing to insulate these fragile bones. After trying every remedy on the market for the insomnia, I saw my GP, and take a powerful sleeping pill every third night so I can rest. To those who are going through this (only 1% of women go through early menopause), my heart goes out to you. I can’t see the silver lining in being in a state not meant for another twenty years, but I have uncovered strength I never knew I had. A toughness despite my being soft. One has to be, when people think hot flushes are funny, that it’s hilarious to say that women in menopause have more swings than you would find at a park. I go gently into this new phase of life.