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My Story-Continued

I was told that it could take up to 12 months for the pain to subside following surgery to release the entrapped Pudendal Nerve and that some medication would still be required, with the aim of this decreasing throughout this time. As I wanted to give my body the best possible chance of a positive outcome I took time off work, and at the 5 month mark I was told I could begin reducing my medications. That was in April of 2010. I returned to work part-time as an National Exam Invigilator, which was a one-off position for a few hours over 3 days over a two week period. Following a successful outcome with the return to work, I interviewed for an Online Educator, teaching Cert 111 in School Support, and obtained this position. The  position was a 9-5 pm office job, quite a drastic change from teaching Gifted students in a Primary School and I thought this role would be an easier and less stressful position  than my previous work. However, the pay was nearly $30,000 per annum less that I was previously earning. The position was also located in my suburb which originally meant I could walk to work, but before I left I was having to drive to work in an attempt to reduce my pain levels. My employers were not aware of my diagnosed condition, although I had let them know of a previous back injury, for which I had set up my desk ergonomically. Trying to discuss my illness, with its very intimate and somewhat embarrassing symptoms, has been something that I have struggled with. I am still trying to come to terms with it and am working persistently on my personal acceptance of this dreaded condition. I eventually found that providing information from the internet in a typed format was successful for me. I began with my family and close friends. Even those close to me did not realise the extent of the pain, nor how it fully immobilized me, when at its worst. Unfortunately during a flare up, it is not only the nervous system that is affected but due to the nerve’s location, both my bowel and bladder, are significantl impacted. I have never been very good at asking for help and was often told that I was “too independent for my own good” but that was how I preferred life. I have also not displayed wisdom in acknowledging and listening to my body, especially when it has attempted to tell me that rest was required. I was ignorant and would push on, when really I should have been listening to my medical team who suggested that perhaps I was ‘doing’ and ‘pushing’ just a little too hard. Internally I could her my inner voice screaming out for someone to give me the okay to be still and acknowledge that all was not well.

By the end of August, the pain had begun to reach unbearable levels. I was undergoing Osteotherapy at this time and taking significant amount of opioids, neurotin etc with little relief. The Professor that I was under, called me stating that the Osteopath had called him regarding the high level of pain my body was indicating during our session and he booked me in for a Nerve Block the next day. It had become difficult for me to sit at all, even on an ergonomic kneeling chair, and I would have to kneel on the floor and continue my work at the computer station that I worked on. I was encouraged to take walks as often as was needed by my employer. There were days were the level of pain was so extreme and I would be in bed by 5.30-6pm trying to rest so I could be at work the following day and would have to spend most Saturdays in bed. In early December 2010 I was rushed to hospital in acute pain. The surgery has not been a success. I was admitted for a week while my medications were adjusted accordingly. The end result, there is no, other than taking the following medications and praying for a future cure. Medications include – MS Contin / Gabapentin(Neuroblockers) /Morphine sulphate/Endep/Valium/Solutions for the constipation caused by the medications. I have been rescued and transported by ambulance,or had to attend the Emergency Room several times since December. I spent more time in hospital throughout January in 2010, which became increasingly frustrating for my employer, which was understandable,  as only a small  team were employed in our section and one employee missing created a significant impact. The final sword fell when an ambulance had to  be called to my place of employment as my pain was again uncontrollable by medications. When an ambulance is required it is because I am unable to physically move from the position I am in, due to chronic pelvic, and other embarrassing pain, such as vaginal and rectal pain. The Ambulance Officers that attend in my area, often remembered me and would quickly begin medications for pain relief, usually the “green whistle” and morphine injections before transferring me to the Emergency Room. My emotional and physical capacity was exhausted during the next stays in hospital. I terminated my employment at the end of January as my condition had deteriorated to such a point that any movements including sitting and laying were not providing pain relief. It was as if the entrapped nerve was on fire, a fire that spread throughout the length of the day. By night finding a position that was comfortable was near impossible.

I agreed  to the trial of a Neuro-Stimulator in March 2010. My frame of mind at this stage was still quite positive that I was going to be able to beat the pain monster and regain my life, my career and my source of income. Unfortunately the trial was unsuccessful due to elevated Blood Pressure, nausea and significant increase in pain. I was then referred for further treatment to the RPA Pain Clinic and which I am still a patient at. I have had two nerve blocks since July, a ketamine infusion and also had Pulse Radio-Frequency to the Pudendal Nerve. Only one of the two nerve blocks was successful, which is sometimes the case. It was during this time that a deep, dark  cloud that had been hovering just above me, came crashing down and enveloped me like a wet heavy blanket. Depression had set in…. To be continued.

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