Growing up with pain – Jainelle’s story

This is Jainelle’s story. A generous and talented young woman who has lived with pain since she was young and wants others to know they aren’t alone. Thanks XXX.

When I was 10 years old, I spent an entire term in hospital. I was experiencing excruciating pain daily to the point of passing out and lost weight from not being able to eat. I had two surgeries, many blood tests, tried many medications, had ultrasounds and saw over 6 different doctors and specialists. Unfortunately, everything was coming back negative and we had nothing else to try. I was eventually medically diagnosed with Irritable Bowel Syndrome and was told that I had a low pain tolerance. The following year I got my period and it was even worse than the pain I was previously experiencing. However, I was led to believe that period pain is normal and that I was simply just sensitive.


I spent the next five years having 1-2 weeks off school for every time I bled or had my period, yet I continued to believe that this was simply just a part of being a girl. I could never understand why my friends were capable of even getting out of bed whilst on their period, let alone go to school and work for 6 hours a day. In 2015 my pain, symptoms and school attendance only got worse, and I immediately knew there was something seriously wrong. The 7 day pain I once experienced turned into a constant ache throughout my entire cycle and the pain that once left me bed bound, now left me immobile and unable to walk. The occasional Panadol I would take during menstruation then turned into an addiction to codeine and the warm hot water bottle that once relieved my pain, developed into an extremely hot heat pack that would burn the skin on my pelvis. It felt like someone was crushing my organs or slowly burning my pelvis with a hot knife, and my bladder felt like it was being strangled every time I would attempt to urinate. I lost my social life completely, and as a 15 year old who wanted to try new things and grow as an individual – that was one of the most hardest things to go through. Unlike the other kids my age, my life had been taken away and I could no longer do the things a teenager would normally do.


Sadly, the endless cycle of appointments and tests with no answer to my pain continued, and I was becoming frustrated, tired and fell into depression and was starting to give up. Fortunately, in January 2016 a gastroenterologist suggested I see a gynaecologist. And as a 15 year old girl who had seen many specialists, I was scared the most to see the gynaecologist. Being in the public health system, I had quite some time to research as much as I could before my gynaecology appointment. During this time I read about Ovarian cysts, Adenomyosis, Cervical cancer and PCOS – but the one that stood out most to me was Endometriosis. The more I read about it, the more I began to realise that I had it. I reached out to 19, 15, 23 and 50 year old women who knew exactly what I was going through. And finally, all the pieces of the puzzle started to fall into place. I tried several birth controls and medications, but continued to bleed heavily and be crippled by extreme pelvic pain. The gynaecologist finally agreed to do a laparoscopy.


In January 2017 I was diagnosed with severe endometriosis. It almost took 4 hours to remove scar tissue and lesions from years of inflammation. I spent the night in hospital and stayed home for three weeks to recover. It took 7 years of pain, blood loss, decreased social life and depression to finally be told that I was not imagining this all, or because I had a low tolerance to pain – but because there was something physically growing inside of me, wrapping itself around my uterus, bladder and bowel. Whilst I still have my pain days, my life has been given back to me and my mental health has improved. I still have endometriosis and still am on two forms of birth control and anti-depressants, but that is something I have learned to live with. My pain is manageable now and I am going to school, planning my future, hanging out with my friends and enjoying my life. I want to devote as much time possible to research, support groups and raising awareness. And as much as I despise my endo, I am thankful for the strength it has given me.”


Thank you for giving me the opportunity to share my story.


Jainelle Propfe