My periods were always excruciating and often kept me home from school or university. My mother used to tell me “all women in our family suffer like that”.
It took years to get a diagnosis; I had endometriosis.
By 27 the pain was no longer just associated with my menstrual cycle, and I was living with chronic pain.
I had a laparoscopy and a laparotomy to remove the endometriosis, but was still in agony. Sections of bowel and bladder were also removed, as the endometriosis was very invasive.
After having twins through IVF at age 30, I had a full hysterectomy, which showed I also had Adenomyosis, another condition that causes pain. My symptoms only got worse.
It felt like a million little paper cuts on my genitals, I had severe rectal pain, and there were bladder and bowel issues. I was unable to sit down for two years and was bed-ridden for one year. I became suicidal.
In 2008 at age 37, I was diagnosed with Pudendal Nerve Entrapment and had nerve decompression surgery.
The surgery helped a lot but I still had terrible pain. My nerves had become sensitised to pain and I was also diagnosed with fibromyalgia.
After a lot of research I learnt about multidisciplinary pain management and once I organised a team of health professionals around me, it really helped.
More recently I found out about sacral cord stimulators and in 2017 I had one inserted, which has brought me an enormous amount of relief and more functionality.
I see my GP and pain psychologist monthly and a pain specialist twice a year. The pain psychologist taught me Cognitive Behavioural Therapy, which lowers my pain levels.
I use a meditation app at home, practice mindfulness and do yoga for chronic pain with Rachael West (www.findingyoga.com.au). I also take medication.
I used to be a Registered Nurse but haven’t worked for eight years due to pain.
I now volunteer for the Pelvic Pain Support Group, which I started together with a friend. I also give talks for ‘Pain Champions’ with Arthritis & Osteoporosis WA and conferences.
Being active in helping others and raising awareness has helped me enormously.
My husband has been fantastic with cooking, doting on me and keeping our family on track.