In August of 2004, following a routine vaginal hysterectomy, I was left with the most horrendous chronic pelvic pain. A pain so excruciating, sitting was not an option. I can only describe the pain as that of a foreign body such as crushed glass needling away at my insides. Extremely painful genitalia and rectum, was my worst nightmare, and my buttocks, thighs and lower back felt as though I’d suffered a severe whipping or scalding.
To my horror, my gynaecologist had no idea what was wrong with me. This was to be the start of a very long and painful search for answers to my problem. Unable to return to work, and unable to do the slightest of household chores, I was passed from doctor to doctor. Numerous tests proved futile, as no-one could find an answer to my problem. Destined to a life of anti-depressants and morphine based drugs, I set about researching my symptoms. This led me to a few websites, which led me to believe that my condition was known as Pudendal Neuralgia, a condition most doctor’s are, seemingly, not aware of.
Useful websites are:
I was very disheartened to learn I’d have to travel to the USA, or France, to seek treatment for this intolerable pain as it is a very difficult condition to treat and often proves extremely frustrating for both patient and the medical profession. Most doctors refer their patients to a Phsychologist or Phsychiatrist.
After numerous doctors visits, I went to see Dr. Tim Pavy (KEMH) who was the first doctor to listen to what I had to say, and take into consideration, my ‘Internet generated information’ about Pudendal Neuralgia. From there we found out about a Gynaecologist in Sydney (Prof. Thierry Vancaillie) who was utilising Botox for pelvic pain. I traveled to Sydney where I had botox injected to my pelvic floor muscles, which were in severe spasm. It was the beginning of many visits to Sydney as I had pain relief for up to 5 weeks at a time following Botox. However, after almost 2 years of these treatments, it was decided that I would go to France to consult with Dr. Eric Bautrant, a gynaecologist who specialises in Pudendal Nerve Entrapment.
In June 2007 my husband and I arrived in Aix En Provence, in France, along with Prof. Vancaillie. I underwent a surgical procedure to release a severely trapped pudendal nerve. (this nerve is both a motor and sensory nerve. It controls the function of the bladder and bowel and also supplies feeling to the genitals and rectum.) Not only was I in tremendous pain but I had a slow urine flow, incontinence and chronic constipation. The French team of surgeons have been treating people, with this condition, from all around the world for a long time, but nothing similiar was being done in Australia.
Five weeks later I arrived back home in Perth, very sore and very tired from the long journey. I have been told it will take from 1 – 2 years to recover, but after one year, I am doing extremely well. I’m off most medication, taking only Lyrica (for neuropathic pain) at night. No more anti depressants, and thanks to GAIN I am now able to assist others with information, regarding this chronic condition.
The best news is that Prof. Vancaillie has started up a private clinic in Sydney specifically for Pudendal Nerve pathology. The first of its kind in Australia. It was an honour for me to be invited onto the GAIN committee, but even more so to become their new chairperson. Through GAIN, I will endeavour to raise awareness of Pudendal Neuralgia, and I look forward to working with the committee to continue the amazing work this organisation has done so far.