My Story – Part 1

My Story – Part One

My Name is Narelle and I suffer from a condition called Pudendal Neuralgia for which there is no current cure. I am a 47-year-old female and live by myself at this point in time I will try to express how Pudendal Neuralgia affects my life on an ongoing basis.. I have two children from a previous marriage who are now aged 27 yrs and 23 yrs old. They both lead very independent, and productive lives, which makes me an intensely proud mother.

 I was diagnosed with Pudendal Neuralgia in 2008 after multiple hospital and specialist visits. Following my diagnosis I have undergone numerous operations and procedures in an attempt to cure the illness. This included Decompression surgery, nerve blocks; using local anaesthetic and botox. I also underwent a trial of a Neuro-Stimulator where two wire leads were located close to the offending nerve in order to alter the pain responses without success. I have been through various medication combinations but unfortunately a cure at this point has been unsuccessful.

Professionally up to this point in time, I was an experienced educator and had enjoyed studying, obtaining numerous university qualifications, obtaining several scholarships throughout this time. As a result of my time spent studying and focusing all of my energy into my profession, I had reached the level of an educator of Gifted Students. I found it increasingly difficult after 2008 to maintain the level of hours required and my absence in the classroom was disruptive to the school and the students for which I felt extreme guilt. I left the school following the necessity for Pudendal Nerve Decompression surgery at the end of 2009. I was off work for just over 4 months, with no income as my teaching position was a Casual position.

Pudendal Nerve Entrapment. This nerve is located in the lower pelvic region but also impacts the bladder, bowel and reproductive systems. I found my workplace to be very unsupportive as on the outside, I looked perfectly healthy. I was in hospital several times over the next year and was given nerve blocks which involved the use of botox. This nerve block would only last 6 -8 weeks and the botox alone cost $500 a vial and could not be claimed against medical insurance. But wow, I really appreciated those weeks without pain. It was then decided that surgery could provide a possible permanent solution by releasing the trapped nerve. By this time I was required to attend a pain clinic in preparation for the upcoming surgery and see a pain clinic psychologist to assist in all that I was experiencing. In the meantime, I was placed on Endone and Valium, neuro blockers and anti-depressants, while I awaited surgery. This type of surgery is still in what should be termed an experimental stage in our country and has only been completed since 2008 by the Professor that I am under. I would be the 26 patient that he would perform this operation on. The surgery had a 64% success rate and with my positive mindset I was determined to raise that statistic. The surgery took place on December 2009. That was just over 12 months ago.…. (To be continued)

8 Comments

8 thoughts on “My Story – Part 1

  1. You are a remarkable woman Narelle and very brave. I was just reading your story and wish strongly that I could do something to help you. Reiki has been a tremendous boon for me and it is well-known as a coping mechanism for pain among other things. Seek out a Reiki Master/Practitioner and have a treatment first and learn to do Reiki on yourself. I hope it will help. Good luck to you.

    • Hi Tracy, I really enjoyed reading your blog too. I’m not too sure about writing for pain week, I have some memory issues from meds. I think they requested I submit one of my past articles but the usual practice is to go to their site aand hopefully the information will be there.

      Health & happiness
      Narelle

  2. A really great blog….it is always reassuring to know that we are not alone when fighting chronic pain! As you so rightly point out, if we look OK on the outside it is hard for others to understand.

    • It’s wonderful to read such supportive comments. Looking okay on the “outside” is sometimes our worst enemy. I had to go to extreme lengths to accept my diagnosis and then furthermore for family & friends to understand. I look forward to keeping in touch. Health & Happiness!

  3. Hi Jenny,
    Thank you for your supportive comments. However, it is I who needs to THANK YOU. I began the blog just over a month ago and was inspired to do so after completion of the survey that your team devised. Your questions hade made me think about whether I was using technology and Social Media to it’s full extent, especially when I am able to use my IPad anywhere, including my bed! The online Support from others suffering or involved in research with Chronic Pain has been outstanding. Sometimes no matter how well intentioned your family, friends or loved ones are in support of your illness, communicating with others who are experiencing the same is incredibly beneficial.
    Health & Happiness
    Narelle

  4. Hi Narelle,
    I am one of the researchers at The University of Queensland working in collaboration with Chronic Pain Australia exploring the use of internet, social media and apps by people with persisitent pain. Your blog is absolutely wonderful. I admire your resilience and creativity.
    best wishes
    Jenny

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