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A Touch of Irony…..

A total touch of irony to end my year!!! Just over three years ago I entered a waiting room to what was to be a life changing experience, both in a negative,and more importantly, in a positive way too. By the completion of the very first visit to this Medical Centre, I was extremely, EXTREMELY, fortunate to have been given a diagnosis of Pudendal Neuralgia by a young gynecologist. Many current Specialists are totally unaware and uninformed in regards to the diagnosis and detection of the illness.
Why do I emphasis how fortunate I was to receive such a horrendous diagnosis?.? Basically because I have met women online and in person who were told to seek psychiatric help as the life altering pain they were describing could not be defined by a medical diagnosis, so it therefore must be in there head. Unfortunately a psychologist and/or psychiatrist is more often than not, needed with the illness, due to depression & suicidal thoughts in it’s patients.
Today, three years later I am here to see another Specialist, in the same Medical Centre, in the same Medical room, for an extention of the same illness, where I began in what seems a life time ago.
In my next post, I am going to continue ‘My Story’ on how I came to be where I am today… Living in Chronic Pain…. But seeing life in a whole new and beautiful way.

I would love to here about your journey with illness or Chronic Pain and how you now manage in life and how every day living may have changed for you. “Taking time to stop and smell the roses” has certainly taken on a whole new meaning for me.

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3 thoughts on “A Touch of Irony…..”

  1. This site seems to be geared towards the PN with women… but here I go. As I type this I’m sitting in the bathtub waiting for it to fill to a good 8-9″ deep. I’ve come very used to sitz baths. I wasn’t even really sure what a sitz bath was up until 6 months ago when I was diagnosed with Pelvic Floor Dysfunction which has created Pudendal Neuralgia. It’s devastating! I can’t imagine anything worse than to have pain every time I make a BM, dribbling after I urinate, perineum pain when sitting and the one that really gets me is having no sex drive. The thought of having this nerve becoming more and more numb/dead bring on an insane amount of anxiety and depression. I’m single, gay, most likely will not have children and my mental and physical health seems to be falling apart with each day. I haven’t found much relief in physical therapy, acupuncture, changed diet, and medication. Flexiral did help for the first two months but I think at this point my body is used to it and it’s not doing much. Have any of you tried nerve blocks? I’m deathly afraid to try this though. I really don’t want surgery to be an option as well. Everything I read sways me away from it. It sounds like it can do more damage. I guess this message is more of a rant since I can’t seem to find any way of soothing or curing this malady. I’m going to keep up with the stretching, exercise, and flexeral hoping that one day it will be better. I’ll feel comfortable dating again, I’ll feel comfortable sitting again and comfortable going to the bathroom.
    Best to you all.
    -B

    1. Dear Concerned B,
      You are the reason that I have began this blog, if only a few weeks ago. YES, it is incredibly emotionally draining. I began blogging as I had hit rock bottom and although I have an amazing medical support team, the pain in all areas that you have mentioned is indescribable. Some of my closest loved ones were able to witness and acknowledge when the pain was at it’s worst but for others the illness is not understood because “you look fine”.
      I have struggled with the “Pain Monster” which I now call it, for 3 1/2 years and have tried most pain relief procedures so can give you my personal account which I hope may help. Nerve blocks do give some relief and the time of relief differs with each patient. For me I usually get 8-12 weeks relief. It does not block all pain or cure the condition but this year a timely block allowed me to travel and get through Xmas. I have learnt the true meaning of ‘pacing’ and “acceptance” both which I fought and struggled with. I have always been a high achiever and lived life at 120 % at all times. I was an educator and part-time student in one post grad course after another for the last 20 years. I underwent surgery hoping to maintain my profession, but 9 months later the pain returned worse than ever. Again each person is different in the response to treatment. I have trialled too many drugs to even mention and these all have their own horrific side effects. In January last year I admitted defeat and spent a long year placing my body as my full-time profession, I was determined to ‘cure’ myself. I tried a spinal cord stimulator without success along with more medications, nerve blocks with pulse radio-frequency. My day now revolves around laying, sleeping(due to current meds) and making the most of my lucid moments here on the computer. I find the loss of my cognitive processes, especially be ‘fluffy headed” and severe memory issues extremely frustrating. On the lighter side I can often amuse myself with my posts as once written I do not remember their content.
      Please, please, please keep in touch, as the condition can be so isolating. I find even when I get caught out and unable to move due to severe pain, ambulance drivers & even Dr’s may not have even heard of PN so the more support we can offer to each other the better.
      I know of a great forum where you can ask questions and read others experiences, let me know if you want their website details.

      Health & Happiness

      Narelle Jane 😎

      1. P.s- I can also relate to this causing significant concerns within a relationship. My partner of three years is now no more and my big question is do I feel strong enough to even attempt going into another with my “broken” body. I am finding there is so much less pressure and stress in my life now because not only was I trying to get better for myself but I also had the added pressure of trying to act pain free for him, as I feared if he learnt how painful and debilitating my condition was becoming that he would choose a partner without the ‘complications’. He did! Am learning to allow life to “just be” and this is bringing me peace of mind as is finding an online community who understand Chronic Pain. Stay hopeful and shout out when you need support!!!

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