Endometriosis and Me. My 18 Year Struggle.

I am what a person with an invisible illness looks like.

I don’t stand out in a crowd nor do people on the street express concern for my health. I smile and laugh with my family and friends. My life appears to be good. But get to know me a little bit more and you’ll see that there is a lot going on beneath the surface.

endometriosis invisible illnessOn the 9th February, 2016 I was diagnosed with endometriosis during a laparoscopic total hysterectomy. I was 30. Finally I had arrived at the end of my 18 year battle to find answers. Endometriosis had covered the outer rear portion of my uterus, my fallopian tubes and my uterosacral ligaments. I had adhesions fused to my bowel. One of my ovaries was distorted and twisted out of place and my uterus was one of the most retroflexed (folded in half) examples my surgeon had seen. What are the symptoms for all of these abnormalities? My day to day life. This struggle could have been minimised if my concerns were heard at the start.

March is international endometriosis awareness month. I thought it fitting to tell my story now in the hope that no other woman has to go through the prolonged struggle that I have had to.

It’s graphic. It’s detailed. But that’s how awareness is spread.

I remember my first period very clearly. I was 11 years old and settling into life at intermediate school. One night I woke up to crippling pelvic pain like nothing I had ever experienced before. It made me feel nauseous, dizzy and weak. I went to the toilet and saw a lot of blood. Panic set in as I woke my mum who assured me I was going to be alright. We talked for a while about periods and how to control the pain. Mum, who also suffered from painful and heavy periods, explained about keeping on top of pain killers and the use of heat packs. Thankfully the pain eased off a few days later and I returned to my normal life. Apprehensive about when this would hit again, but happy it had finished for now. My mum believed it was normal, her mum believed it was normal. It was seen as just part of a woman’s lot in life.

One month later I was once again popping pain pills. I had to have a few days off school due to the pain. This was the story of my teenage life, every month, for the next seven years. Each month my period would get more and more painful. I had to miss school for a few days every single month.

Somehow, despite the time away from school, I managed to gain University Entrance and began my tertiary education in 2004. Things continued from bad to worse. Not only was I in tremendous amounts of pain during my period, I had now started hurting mid cycle when I ovulated. I had to deal with this hell twice every month. Fatigue was my new best friend and I had barely any energy due to the stress pain was putting me through.

I booked in to see the GP at Student Health to demand answers. I knew that what I was going through was not right. Something was wrong and I wanted to know how to fix it. After going over my symptoms with the Dr, I was prescribed stronger pain killers and put on birth control pills. I was advised to run packets together to eliminate my period completely. That was their answer. Stop the symptoms and I would be fine. No need to dig deeper into the cause.

The pills I was on definitely eased my symptoms. I was able to manage my pain enough to focus on my studies. I still had episodes of excruciating pain, but they were few and far between. In 2009 I enjoyed my first year teaching after gaining my Graduate Diploma in Teaching. My husband and I were married in early 2010. Our lives were almost perfect and my horrific painful teenage years were a distant memory.

Until we decided to try for a baby. Of course this meant I had to stop taking the birth control pills. Exactly one month later my life was once again turned upside down. The pain was severe. I was vomiting and shaking. It was no longer related to my cycle, instead there all the time. Whenever we had sex the pain was so excruciating that we had to stop. We could no longer have sex a mere 3 months into our marriage. That definitely wasn’t normal so I went back to my Dr.

‘Psychosomatic pain’. That is a diagnosis I was about to become very familiar with. It’s a really fancy, subtle way of saying you don’t look sick so it’s all in your head. Instead of being referred to a gynaecologist, I was prescribed 3 sessions with a counsellor. My pain during intercourse, according to the counsellor, was caused because I didn’t love my husband. It didn’t explain why I couldn’t use tampons either, or internal examinations which were both equally excruciating. This was by far the biggest insult I had been dealt during my whole struggle with pelvic pain. Needless to say, I walked out and demanded to be referred to a gynaecologist.

Sadly the gynaecologist I saw was no better. After an ultrasound scan came back with no abnormalities, he reluctantly put me on the waiting list for diagnostic laparoscopic surgery and informed me that “when we don’t find anything, you’ll find your symptoms will go away”. He said that if anything was wrong it would have shown up in the ultrasound (endometriosis DOES NOT show up in an ultrasound FYI). I sunk into a deep, dark depression and gave up on any hope of a normal, pain free life. There was no light at the end of my tunnel. Severe pain was just going to be in my life forever. No one apart from my immediate family and close friends knew the extent of it. A lot of people in my life got sick of me being sick and drifted away. My mum saw me pass out right in front of her during a pain episode. My husband held me as I thrashed around in bed, screaming in pain. I took strong pain medication before sex so that we could try to get pregnant. I was exhausted and just lay in bed all the time. That was my ‘normal’ life.

While pregnant with and breastfeeding both my daughters, I had what I considered a holiday from my hell. Even drug free labours were less painful than dealing with my period. Sex was still too sore, but that was my only symptom. Easily avoidable but to the detriment of my marriage. But my painful periods soon returned, each time worse than before. I was told that I can’t possibly have endometriosis as that is cured by having children (which is a lie). All of my symptoms were pointing so clearly to endometriosis and yet none of the Drs or specialists I saw were willing to admit that was what was going on.

While pregnant for the third and final time, I didn’t get as much of a ‘holiday’ from pain. In addition to pain both during and the day after sex, I was now experiencing a lot of pain during bowel movements especially after our son was born. I dreaded having to go to the bathroom. When my period returned that was it. I couldn’t take it anymore. I made an appointment at the private Oxford Women’s Health in Christchurch and borrowed some money from my parents to pay for it.

Dr East was amazing. He was the first medical professional I had seen that understood my struggle. He believed me when I said I was living in daily pain. After hearing all my symptoms he said that he would be very surprised if I DIDN’T have endometriosis. We discussed my options in depth. As I don’t have health insurance, it was sadly not an option to have the leading endometriosis surgeons in the country treating me. My husband and I had decided our family was complete, so a request was sent to my GP for an urgent total laparoscopic hysterectomy and bilateral salpingectomy (tubes removed but retaining ovaries) through the public system. This was in October, 2015.

I saw a public gynaecologist 3 months later. She thankfully understood the struggles I had been through and agreed that the planned surgery was necessary. 2 weeks later I was lying on a theatre table, being put to sleep.

Finally I had answers. Painful sex was because of my retroflexed uterus, which had also squashed my bowel causing the painful bowel movements. My severe period pain was because I was bleeding internally every time. My back ache, leg cramps, fatigue and depression. There were answers for it all. Endometriosis.

A hysterectomy is NOT a cure for endometriosis. It might ease symptoms but there is no guaranteed cure. It might grow back and cause all the same problems. I might need further surgeries. But right now, 3 weeks post operation, I feel like I have won my battle just by being diagnosed. No one can fob me off with psychosomatic pain ever again. I have to be taken seriously from now on. And for that reason alone, I have won.

What is endometriosis?

Endometriosis is when the tissue similar to the lining of your uterus, grows elsewhere in the body. During your period, this abnormal tissue bleeds and becomes inflamed. Only there is nowhere for the shedding tissue to go. This causes pain, scar tissue and can fuse organs together over time.

What are the symptoms?

  • Painful periods
  • Bowel issues similar to IBS
  • Painful sexual intercourse
  • Infertility
  • Fatigue
  • Lower back and leg pain
  • Ovulation pain
  • Bladder issues

How can it be diagnosed?

Endometriosis can ONLY be diagnosed via laparoscopic surgery. Around 1 in 10 women are diagnosed with endometriosis, usually after an 8 year struggle on average. But many more women remain undiagnosed and suffering.

Where can I go for support?

If you are in New Zealand, I highly recommend contacting Endometriosis New Zealand. Their website is a comprehensive resource, as is the book Endometriosis and Pelvic Pain. ENZ can put you in touch with local support groups and events.

 

Happy Mum Happy Child

One Handmade Hat That Started It All

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Our little boy Lucas, his head full of hair, and myself.

That is me in the picture. Sarah Meys.

Wife. Mother. Crochetologist.

There are many other words I could use to describe myself, but those are the three words that hold the most importance to me. For the past four and a half years I have been nurturing not only my three beautiful children, but also what I like to refer to as my yarn baby, Meys Made. My business has become a much loved sixth member of our family since the start, and just like raising any small child, it sure has been a roller coaster ride. There has been joy. Learning. Frustration. And many a handmade hat posted away. But mostly, I have developed a tonne of pride over what I have achieved as a work at home mum.

Today I share with you the journey of my business, Meys Made. How one handmade hat started it all.

It was August, 2011. I had just become a mother to a beautiful baby girl 3 months earlier. She was everything we had hoped and dreamed for. Bright blue eyes, a cheeky smile and a shiny, bald head.

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Our baby Ella. Around 7 months old. Still no hair.

No evidence of hair whatsoever. Which was cool, really cool to be exact. Especially as she was born into one of the coldest winters I had experienced in chilly Dunedin, New Zealand. My poor little poppet was freezing every time we braved the conditions to relieve cabin fever. Sure there were mass produced winter hats I brought for her, but every other baby was wearing them too. Enter mummy paranoia. What if I lose my girl in the sea of pink cotton hats? (Sleep deprivation makes you worry about strange, strange things).

I got home, with the correct pink cotton hat baby, and searched Google for girls’ winter hats. Several images really jumped out at me. They all had two things in common: ‘crochet’ and ‘pattern’. My inner crafter was instantly awakened. I could potentially make one of these hats? I could potentially make one of these hats! I remembered my Mum had a crochet hook at home and most likely some yarn stashed away somewhere, so she was asked nicely to courier them down to me.

I purchased the patterns for the hats I had fallen in love with and I got started. After viewing a few You Tube tutorials and unraveling about 567 failed attempts, I was finally away. Crafting a 3-6 month sized handmade hat for my little girl. I felt like I was conquering Everest.

Unfortunately, there was a slight sizing issue thanks to my tight stitching in the beginning, but I’m sure Ella’s little doll appreciated her new hat. Attempt two was far more successful and fitted my princess perfectly. Finally we could venture out into society knowing that my little girl was warm and easily identifiable.

It was about 1 week later when a friend asked if she could have a handmade hat for her little girl. Sure, why not? I had ample yarn left over and it was a great way to pass the time during those long newborn feeds. My friend returned soon after asking if I could sell one to her friend. Sell? Wow! I had never thought of selling my hats. But being on one income, with a killer winter power bill looming, I gladly accepted the request. I started to get more and more requests. It was really exciting and I started to imagine the possibilities. Maybe I could start my own business? Imagine if I could actually get paid to enjoy my hobby, to relax with some yarn and a hook. It sounded too good to be true. But I knew it was a real possibility.

I followed a lot of New Zealand small businesses on Facebook that made children’s items. Maybe I could join that awesome group of work at home mums? They were always so inspiring to me. They seemed to have the best of both worlds; earning an income while they stayed at home with their kids. They were making money, doing what they loved, in a surrounding that they loved. It seemed like the epitome of a dream job. That was it, I wanted in. I had WiFi and I had constructed a dream. I dreamed of being able to afford to stay at home with my baby every day. She was growing so fast and I didn’t want to miss any of it. I couldn’t imagine going back to secondary school teaching and not being with her each day. I dreamed of having a little bit of extra money to get me out of my no longer needed maternity clothes. I dreamed of being able to contribute to our family income, just like my hard working husband. I wanted to be able to fund my growing obsession with buying yarn. Thinking about the joy I got when receiving thankful messages from parents who had purchased one of my hats, I decided to take the plunge and set up a Facebook page. My yarn baby, Meys Made, had officially been born into the business world.

It wasn’t all fun and games and I made a lot of mistakes while learning about being a start up business. How much to charge for hats so I covered costs, how best to advertise them, and how much time I should be spending with it. But over time, I started to feel a bit more comfortable with the title of ‘business owner’. My dreams were coming true. Our financial strain was becoming less and I was even able to buy my wonderful husband a small present. I was being sent beautiful pictures of adorable little babies in the hats I had made for them. It made me so happy. I felt like in a very small way, I was contributing and making a difference in the world, one hat at a time. The best part though was being able to do something that I found so relaxing and enjoyable, and actually make money in the process.

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One of my favourite hats that I have made. A super hero hat for my little boy.

Fast forward to March, 2016. Two more human babies have joined our team, and Meys Made handmade hats are still here. My business needs to be a bit more self supportive lately, after all I’m running around like a headless chicken with 3 preschoolers to care for, but it knows I could never give up on it. Meys Made is my yarn baby and always will be.

“Start where you are. Use what you have. Do what you can.”

– Arthur Ashe

 

Hat sizing

Here at Meys Made I strive for 100% customer satisfaction. In order to achieve this I need to be working with accurate head measurements. The age range alone is not an accurate measure of your child’s head, this is for approximation only.

What you will need to get an accurate measurement:

  • Tape measure or anything flexible and non-stretch
  • Your child’s head

Wrap the measure gently around your child’s head just above the top of their ears. Note the measurement. Do this several times to get an accurate measurement. Please don’t pull the measure too tightly. If you were using string or equivalent then simply measure the string with a ruler afterwards to get the head circumference.

If you want the hat to be snug and secure then I will make the hat just slightly smaller than their head circumference. If you want the hat to be baggy with lot’s of room for growth I will make it slightly bigger. It’s completely up to you.

My ready to ship items are made in the six sizes on the following two graphs:

Small size chartLarge size chart