The following blog was written by the Chairperson of the GAIN Committee and was posted on their behalf by Patient Opinion Australia.
I still, after 13 years of chronic pelvic nerve damage, have ongoing treatment of Botox to my pelvic floor muscles, every 8 months or so. My experience is not as uncommon as it can be made out to be by health professionals. Pudendal Neuralgia and Pudendal Nerve Entrapment is a condition seemingly most doctors are unaware of. Sadly, not many specialists are knowledgeable in this area of medicine. I'm on a crusade to establish more pelvic pain clinics throughout Australia to take a multi-disciplinary approach to this horrendous condition. Pudendal Neuralgia affects both females and males; yes, men have pudendal nerves too, despite what the definition is in any dictionary.
My story begins in August of 2004. Following a routine vaginal hysterectomy & pelvic prolapse repair 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, cutting away at the insides of my vagina and rectum. 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 opiates, no job, and relationship breakdown, I set about researching my symptoms. This took me to a few websites, which led me to believe that my condition was known as Pudendal Neuralgia, a condition most doctors are, seemingly, unaware of.
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 the patient and the medical professional. Most doctors refer their patients to a psychologist or psychiatrist to help 'deal with the pain'; I was told off by one specialist for making too many appointments! I was even referred to the Sexual Health Clinic where I was tested for STI’s.
After numerous doctor visits, I saw Dr. Tim 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 a Gynaecologist in Sydney, Prof. Thierry, who was utilising Botox for pelvic pain treatment. I travelled 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, a gynaecologist who specialises in Pudendal Nerve Entrapment.
In June 2007 my husband and I arrived in Aix En Provence, France, along with Prof. Thierry. I underwent a surgical procedure to release a severely trapped Pudendal Nerve. This nerve is both a motor and sensory nerve and it controls the function of the bladder and bowel and also supplies feeling to the genitalia and rectum. Not only was I in tremendous pain, but I had urinary 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 similar was being done in Australia.
Five weeks later I arrived back home in Perth, very sore and very tired from the long journey. I had been told it would take from 1 – 2 years to recover, however it actually took more than 3 years to come off most medication, taking only Lyrica, for neuropathic pain, at night.
The best news is that Prof. Thierry has opened a clinic in Sydney specifically for Pudendal Nerve pathology. The first of its kind in Australia! Dr. Susan, a gynaecologist from Adelaide has followed with the establishment of the Pelvic Pain Foundation of 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 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.
I'd also like to thank and recommend the following doctors for believing in me, and taking the time to 'listen' to me and supporting me through such horrendous pain for more than 10 years. I survived.....many don't.
Prof. Thierry, Gynaecologist/Pain Medicine Specialist - www.whria.com.au
Dr. Tim - Anaesthetist/Pain Specialist, who established the first pelvic pain clinic in WA
I am now the president of a not for profit women' support group GAIN Incorporated, located in Subiaco, WA and supported by King Edward Memorial Hospital - www.gain.org.au
Treating Pudendal Neuralgia (PN) and Pudendal Nerve Entrapment (PNE)Treating Pudendal Neuralgia (PN) and Pudendal Nerve Entrapment (PNE) https://www.patientopinion.org.au/content/au/1/android-chrome-256x256.png Patient Opinion +617 3354 4525 https://www.patientopinion.org.au https://www.patientopinion.org.au/content/AU/1/images/logos/po_header_logo.png
Update from Patient Opinion Australia
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