In days gone by women like me would most likely have been locked away in a psychiatric facility being told " Your pain is in your head!". We can't find anything wrong with you.
Fortunately a few health care professionals took the time to listen and support me in my quest to find answers to my chronic retractable pelvic pain sustained after pelvic surgery in 2004.
This pain is not just any pain as we know it. I couldn't believe such horrendous pain could exist.
Because of the location and nature of my pain I found it very humiliating and terribly stressful to explain as I was passed from doctor to doctor.
Searing, burning, stabbing like torture to the genitalia and rectum, painful numbness across my buttocks and thighs like I had suffered a severe whipping, and a feeling of my whole pelvic floor falling to the ground left me incredibly distraught.
Nobody knew what was wrong with me. Gynaecology said it was neurological. Neurology said it was gynaecological. Actually....it was both!!
It was the beginning of a very long nightmare. I was deemed a hypochondriac by my family and work colleagues. I would lock myself away from the world praying that one day I would find a doctor who could at least tell me what had gone wrong. I didn't want to die but equally didn't want to wake up each day and struggle through the long day of extreme pain and sadness. I was on the brink of insanity.
Destined to a life of opioid drugs and anti depressants which didn't help the pain but merely kept me in a state of delirium, I carried out my own internet research and found others who were suffering the same fate.
As a result I eventually found a team of French specialists who were taking a multidisciplinary approach to this horrendous condition. I did find a Sydney gynaecologist who was willing to try botulinum toxin to my pelvic floor muscles as they had gone into severe spasm. (The body's defence to pain.).
Whilst Botox helped the muscles relax it was clear that my pain wasn't going to be cured by this alone.
3 years later in 2007 in desperation and at the end of my tether, I made the long, painful journey to France to consult with Pudendal Nerve experts. It was here that I was diagnosed as having a severely trapped pudendal nerve. A sensory and autonomous nerve deep in the pelvic floor the Pudendal nerve controls the function of the bladder & bowel and supplies feeling to the genitalia and saddle area of the pelvis.
I underwent a surgical procedure to release the nerve. Trapped between ligaments, it was an area of medicine poorly understood and no treatment like this was available in Australia. Fortunately the Sydney gynaecologist who'd treated me with Botox came to France and participated in the surgery.
Pudendal nerve release surgery was no quick fix but within months I noticed little improvements as my traumatised nerve began to heal.
As the years passed I recovered ever so slowly. Good weeks and bad weeks. Ongoing hydrotherapy, physiotherapy and psychological counselling all helped me out of the darkest days.
It's now been 11 years and although not entirely pain free, I am so much better. Pain is still around but nothing compared to what it was.
I manage without any meds and I'm careful to protect my pelvic floor at all costs. I still have the odd shot of Botox to the obturator muscle. For some unknown reason it spasms every once in a while causing me discomfort.
There are now pelvic pain clinics in Australia treating both men and women. We also have a Pelvic Pain Foundation of Australia. I run a support group here in Perth along with fellow sufferer Vanessa Watson. Together we offer hope and understanding to people who are going through this unrelenting pain. It not only robs us of a normal life but it affects our whole family. Relationships often break down and some have taken their own lives because they simply couldn't cope with the pain any longer.
I helped establish an online help and support forum www.pudendalhope.org
Information leaflet on pelvic pain can be downloaded from the home page.
It's been a long painful journey these past 11 years but I'm now in s better place.
I continue to advocate and raise awareness and education on Pudendal neuralgia. I am so grateful to the few health professionals who cared enough to follow my journey and offer treatments to help me through this horrendous pain.
My pain is likely to be lifelong but is now tolerable. I'm one of the lucky ones.
My advice to doctors ... please take the time to listen to your patients because one day you might just learn something you didn't learn in med school.