Rhonda's Endo and Fertility Journey
By Rhonda Lane
My name is Rhonda, I’m 31 years old and from the Gold Coast.
At the age of 14, the bloating and intense pains started. Being relatively new to periods, I was under the impression it was just normal PMS. This was my normal. That, and irregular cycles. Unlike my friends, I couldn’t tell you when my period was due. My cycles were so unpredictable. I could go months without a period, and often did.
School taught us the very basics of a menstrual cycle to my recollection. We were told that women bleed monthly and the bleeding is managed with pads and tampons. Our sex education was also basic. A baby is made when sperm meets an egg. Eggs come from ovulating. That's all I really recall. Everything else I know, I had to find out myself.
My Mum first took me to a doctor when I was nearly 15. Like me, my Mum was very confused about what was going on with my cycle. She didn't know what to do to help me, other than take me to doctors. It was hard for her to witness, and she felt quite helpless as a mother. Her daughter was suffering and no one was giving us answers.
I am grateful that I was able to talk to my Mum about all this, because I couldn't talk to anyone else about it. All of my friends had seemingly normal cycles. It was like I was different, and speaking about my abnormality would prove that I wasn't a normal teen. Teens just want to fit in, be part of the group. I didn't want my friends to know I was different in case they rejected me.
In 2006, when I was 17, I decided to see a gynaecologist. Before reaching this point, I'd seen a several GPs. At that first gynaecologist appointment, I was armed with 5 different ultrasound reports. These reports showed cysts, retroverted uterus, thick endometrial lining and a missing ovary. Initially the gynaecologist suspected endometriosis and suggested trying another brand of pill. Neither my Mum or I thought this was good enough.
My Mum advocated for me. She was sick of seeing her daughter in so much pain. It wasn't good enough that I was being constantly put on a merry-go-round bouncing from doctor to doctor. Each suggesting similar treatment. Something needed to be done about it. As a result of my Mum's insistence, I was booked in for a laparoscopy 3 weeks later.
The laparoscopy found my missing ovary and also confirmed that both my ovaries were covered in cysts. Along with that, the laparoscopy confirmed that I have endometriosis. The endometriosis had stuck my uterus to my pelvis and that was why my uterus was retroverted. During the surgery, the surgeon removed the endometriosis. This included having the separate my uterus, ovaries and bowel from my pelvis. They'd become stuck there thanks to the endometriosis.
Recovering from that surgery was horrible. Not only was it physically hard, but emotionally too. I was told that my condition could have an affect on my fertility. I was only 17 with a diagnosis that could mean I may never have a baby of my own.
By 2009 I was seeing a different gynaecologist. All the same symptoms I experienced in my mid teens had returned. They had been back for at least 12 months at this point. So, I had another laparoscopy performed to remove the endometriosis and free my organs from each other.
Over the next 4 years, about 8 months after my last laparoscopy, all my symptoms returned. During those 8 months, my cycles we 28 days, and pain free. Gradually my cycles would become irregular again, and the pain returned. I experienced it predominantly down my right side, across my lower back, bum and lower abdomen. The bloating I experienced was incredible! When I was bloated, I looked about 5 months pregnant. This went on until 2013 when I had another laparoscopy.
During these years, doctors tried to manage my condition. They changed my oral contraceptive pill multiple time. At one point I even had a Mirena IUD inserted. That in itself was a traumatic experience. My cervix had to be cut as the doctor couldn't get it in. I walked out of the doctor's office in tears, buckled over in pain and bleeding. That bleeding continued for 10 weeks straight before I demanded the implant be removed. There was nothing that helped regulate my cycle or with the pain I experienced. Not to forget the mental mess that came with it.
In my specialist office, 6 weeks after that last surgery, I felt numb. I felt worthless. Then I was told that due to the extent of damage from the 3 surgeries, my tubes were now blocked with scar tissue. It had become near impossible for me to fall pregnant naturally. I went into shock. Heartbroken and torn to shreds, I came to realise I would never be a Mum.
Surprisingly, against all the odds, in 2014 I fell pregnant naturally. My husband and I were over the moon. Sadly we lost our bub at 6 weeks, 4 days. Rather than hope we could beat the odds again and try naturally, we then decided IVF was our best avenue.
We had our first IVF consultation in 2016. Initially we saw a fertility specialist at our clinic, but that doctor believed our case was 'too hard' and referred us to the academic professor in charge of the clinic. He was adamant that he could get me pregnant with the first transfer! What hope! Well wasn’t he wrong.
To keep this short, we have now had 4 miscarriages from IVF pregnancies. One of those was an ectopic which ended with the surgical removal of one my fallopian tubes. While they were removing my tube and baby, they also cleared out my endometriosis again. That was in July 2017... Fast forward to 2019, when we decided to start with a new IVF clinic, we went through the whole process of the resting and everything that comes with it. We were waiting for our next appointment when to our surprise I was pregnant, after a few blood tests my pregnancy hormones were increasing perfectly, then a week later I’m in hospital with severe pain. 5 hours later and I was having surgery to have my only tube removed which was holding our baby along with another clean out of the scar tissue & endometriosis. It’s now mid September and we are waiting to go back to our IVF clinic for another round of hormone injections to have eggs collected, inseminated and transferred back to my womb in hope the embryo sticks and I fall pregnant with a healthy baby that I carry for 40 weeks.
My experience has made me passionate about making sure others get the help and support they need. I believe my situation could have been different is there was better education given to women about their bodies. Women need to know that there is a realm of normal which is different for every individual. They need to know that they can expect to experience during their '28 day cycle'. In addition, they need to be taught about the uncommon experiences that could happen during their cycle. These are the important ones that will help them identify if there is something abnormal with their cycle. A menstrual cycle isn't as simple as 28 days and vaginal bleeding for part of it. Most importantly, they need to know all this before they even get their first period.
I make the effort to contribute to the education of others when I can. When I'm talking to people and they mention they experience painful periods, I am quick to ask them more about it! I'll share my story with them and encourage them to seek help.
I can be found on Instagram as a part of an amazing TTC (Trying to conceive) community with thousands of women all experiencing their own battle with infertility and other female reproductive system problems. I share my story / journey publicly to help others not feel alone, I post raw and deeply emotional material & don’t hide my struggles as it is my truth and it’s a part of many women’s daily life.
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