My Story – Part 2

 

My Name is Narelle and I suffer from a condition called Pudendal Neuralgia for which there is no current cure. This is My Story of how Chronic Pain can change your life in oh so many ways:

My Story – Part 2

I was told that it could take up to 12 months for the pain to subside following the surgery 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 Exam Invigilator, which was a one-off position for a few hours over 3 days over a two-week period. Following this success I interviewed for an Online Educator, teaching Cert 111 in School Support, and obtained this position. This was a 9-5pm office job, I thought this would be an easier position even though 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.

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 at this time. The Professor that I was under called me stating that the Osteopath had called him regarding the high level of pain and he booked me in for a Nerve Block the next day. It had become difficult for me to sit, 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 talk 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 solution for my condition. I was consoled by the Professor and his team but no one was able to offer any alternatives 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 taken by ambulance or had to attend the Emergency Room several times since December. I spent more time in hospital throughout January which became increasingly frustrating for my employer as they only employ a small amount of staff and one employee missing was significantly noticeable. An ambulance had to be called to my place of employment as my pain was again uncontrollable by medications. When ambulance is required it is because I am unable to move in my current position, due to chronic pelvic, and other embarrassing pain, such as vaginal and rectal pain. The Ambulance Officers that I 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 ability 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 was not providing pain relief. I underwent a trial of a Neuro-Stimulator in March. 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 at which I am still a patient. 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.

I currently see my GP, a Psychologist, Pain Psychiatrist, Specialist Pain Doctors at my local Pain Clinic, Physiotherapist.

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6 thoughts on “My Story – Part 2”

  1. Hi Narelle,

    Thank you for writing “your story”. I believe that it is good to just take the time and write about how you feel and what you are going through. Then also to share it online for others to read. This is one way to help you through the emotional and mental day to day living with chronic pain.

    On the days when you think that everything is crashing around you, just look back over your posts and read the supportive comments that are written there.

    1. Hi Brad,
      I have taken a year or more now break from blogging as I felt I had not much more to say. I didnt even check into read what was happening while I took time out to REALLY deal with everything and gather strength. Thanks for taking the time to post, it was exactly how I was feeling.
      Health & happiness

  2. Chronic pain eats your soul….well that’s what I found. Looking back on 25 years of pain I have very mixed feelings and have started to bring them together and write about it. Maybe you would be interested in my blog which talks about back and neck pain (trapped nerves, prolapsed discs, spasms etc.) and of course chronic pain. I have turned things around finally and wish you all the best in your search…please leave a comment on http://www.backpainsurviving.com if you would like. Best wishes.

  3. Hello, it is really great to make contact with you. I was reading your blog last night and it sincerely reached out to me. I can see why now… You understand what life is really like when you are a sufferer of consistent, severe pain. The “Acceptance” word is definitely a word that meanders in and out of my vocab, and I do not like even the sound of it at present. I am like you were, “THAT” word, Lol, can sometimes provide a sense of peace & safety and at other times, leaves you feeling so unsettled that you cannot sleep at all as you madly scour the Internet looking for any glimpse of a cure.
    All my appointments start up again next week and I must say the break from most of the appointments over Christmas, has been like being on holidays. I feel more relaxed and ready to go another round. The Pain Clinic team are still working on getting the pain to a more manageable state…??
    I want to send you lots of healing hugs for speaking out & really appreciate your time in responding to my post.
    Love to keep in contact 🙂

    Health & Happiness
    Narelle

  4. It’s a long journey isn’t it? I am very sorry that your chronic pain has been ongoing and doesn’t seem to have any positive outcome – at least for now. If you’re like me, you become so drained of energy being shuffled from one specialist to another and to what benefit? Little, if any. If you’re also like me, you’ve probably gotten to the point where several times over the years you marginally “accept” your situation and make the decision: I’m not going to seek any further treatment!!!!! Then you hear of another treatment protocol and start researching whether or not that protocol would be beneficial in your particular circumstance. As for me, I sincerely hope that I stick to my guns with my most recent decision to yet again dispense with any further treatment options. I absolutely don’t want to start all over again with yet another provider/specialist. Wish me luck! And I wish you heaps and heaps of luck as I continue to follow your Blog. I’m glad we found each other.

    1. Dear Narelle and boomer98053,

      Have you considered treatment options outside of conventional medicine?

      Shaolin Wahnam Qigong (sometimes spelt and pronounced Chi Kung) is a moving meditation which overcomes illness through stimulating the bodies’ innate ability to heal itself.

      On this facebook page can be found an interview with my teacher, Sifu Wong Kiew kit of Malaysia, on overcoming chronic pain;

      https://www.facebook.com/FullyAliveArts

      And here is a testimonial of one of my colleague’s journey out of chronic pain;

      http://www.shaolin.org/comments/jean.html

      Best to you and yours,

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