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The Pudendal Neuralgia Masters

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This post has been updated, please visit Pudendal Neuralgia treaters around the world or continue to read this and all the lovely comments from the amazing Pudendal Neuralgia family.

International Pudendal Neuralgia specialist locations

I can’t adequately define the moment I was diagnosed, it’s just too difficult to explain the 4.5 year scattered hunt that ended with a few seconds and just two words!

Empathy and understanding however, are two words that do explain what I felt when seeking approval to use the research and names of the Pudendal Neuralgia Masters (as I like to call these specialists). Honestly, if words, thoughts and care from complete strangers could heal me I would have been healed twice over by now. These Masters really touched my heart (unfortunately not my stubborn Pudendal Nerve, but all in good time!).

I wanted to share these comments, especially for anyone suffering with Pudendal Neuralgia as I feel its important that we all know who these incredible human beings are and that they are endlessly working towards our cure and international awareness every day. The other important thing is to know where they are. Continue Reading

Flare up

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Flare Up Process

Talk about getting the life sucked out of me! And the long-awaited, grand finale, official last symptom of my flare up is waking up and feeling I’ve had a bulldozer go over me… a few times… at least! My muscles ache all over, I could almost fool myself and pretend I’ve run a marathon, but in reality I’ve been in the dark cave of pain for days, sleeping and resting… and sleeping and resting. Oh yes but getting up long enough to cancel any commitments, or in the final day, getting up and attempting a coffee outing, only to realise that nope, flare up wants a bit more of your life.

I have nothing nice to say about a flare up. It’s nothing but my injury’s hissy fit and a brutal check point that tells me I’m not my old self yet. But since I like to keep a positive outlook and focus on the good things, I will say that coming out of a flare up feels incredible. I feel I could fly, my brain gears up again: ‘Of course I’m going to beat this’, ‘yes, I’ll be me again one day’, ‘I’ll get back to work for sure’, ‘I’m going to start a painting tomorrow’, ‘I’m going to sit on a hard bench tomorrow’, ‘movies – bring ’em on!’ and, ‘darling, let me drive today’...

Five years on…

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Five years were needed to finish the garden and surrounding buildings of the Taj Mahal Read more…

A mother was given a 5 year prison sentence for sending her five year old son to a school district where she had no permanent residence. Read more…

Willow the cat went missing in Colorado during a house renovation. Five years later, miraculously, the feline was picked up stalking the pavement in Manhattan in New York City and is being reunited with his owners 1800 miles away. Read more…

It took five years for Facebook to make a dime. Read more… and it took five years to reach seven hundred million worldwide users. Read more…

Five years after the first ever tweet, the 572,000th twitter account was created and the 177 millionth tweet was sent. Read more…

It took five years to build the Christ Redeemer Statue that stands 125 feet tall atop the Corcovado Mountain high above Rio. Constructed in France by sculptor Paul Landowski, it was shipped to Brazil in pieces, and then carried up the mountain by train, where it was reassembled. Read more…

It took Emma Thompson five years to write Sense and Sensibility, for which she won an Oscar. Read more…

In 1980 Post-it® Notes were introduced nationwide. It took five years to perfect the specifications and design machines to manufacture the product. Read more…

It would take 5.4 years at Mach 1 (0.34 km/sec) to get to Mars from Earth Read more..

But my point, folks, is that it’s taken 5 years to find and shut my pudendal nerve up and greatly reduce my chronic pain.

Please spread this link www.pudendalnerve.com.au, pudendal neuralgia need not be a mammoth issue for anyone, and certainly a feat not worth enduring for any reward in the world.

How do I do it?

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Absolutely nothing great about having to live by these rules but it certainly saves me alot of extra pain, I have more up time and, above all, I decided this is just temporary. I’ll do what it takes to get by most comfortably (if I can dare to use such a word for a chronic pain site!):

  • Write in my journal, release frustration there
  • I found relaxation techniques (from foot rubs to breathing, showers, smelling flowers, etc)
  • I learned and practice Alexander technique
  • I have regular massages with the same practitioner (cupping included)
  • I accept help
  • I lean/rest everywhere, even on traffic lights, I use my elbows on the table (who says its rude?)
  • I have a walking stick for a more difficult outing (like travel or gallery visits)
  • I sleep in, rest, nap or all at different intervals throughout the day
  • I have insoles gallore! I insert a heel gel under my shoe’s sole and then insert a full length Crock sole ontop of my shoe’s sole
  • Limit transportation as much as possible
  • I’ve made home super comfy and as happy as possible, things within easy reach and as light weight as possible (plastic fantastic!)
  • I’m totally setup on the internet so I can communicate to all my friends and family and stay in the loop with my great loves, design and art
  • I accepted more help
  • I shop online
  • I bought a smart phone (allows me to travel much lighter, play mind strengthening games, use resourceful apps, stay creative with photography, social networking, keeps you in touch with the world etc etc),
  • Sadly, packed away the g-strings for now and replaced them with nice full and firm underwear. Nothing synthetic or too tight
  • Keep the ice pack and heat pack handy at all times
  • I’m strictly keeping my weight down (the cruelest of all, as if being in pain isn’t bad enough I have to diet!!!!!!!!!!!!!!!)
  • Do my own research at all times, keep up with my condition’s progress
  • Listen to my body
  • I write, read, draw, learn, whatever, I find some short, light, flexible duties
  • I take part in my community as much as I can (gallery openings, have a coffee with a friend, simply bump into neighbours while walking, post a letter, even though it hurts I still go out for dinner, a drink, anything I can manage)
  • I accept even more help
  • When I feel like I can handle the pain, I move, do a little dance, whatever I just do it!
  • I understand that everything I do counts, even a sneeze (ok they count alot!) so I make sure I pick and choose what I do
  • I learned and practice the word pace
  • I’m more selfish
  • I say “I can’t” and recently I’ve even stopped apologising because “I can’t”!
  • I let go of obligation (actually I need to work on that one)
  • Keep any visit short, close, soft (not too many parties unless you can walk away)
  • I email my WorkSafe case manager to eliminate hearing all unnecessary hogwash
  • I have a daybed and made a ‘dayspace’ no where near a television or my bedroom
  • I have a dog, he’s one of my biggest aids

My family, Theo, Origin of Image and Zephyr

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How do you cope, how do you keep the smile on your face, you don’t look like you’re in pain, you’re so strong, but you don’t look like you’re in pain, how did you manage to do that? etc etc.

These are some of the questions and comments I hear all the time. There isn’t one single reason I can give for ‘coping’, I think a few things play a role (and my personal list of rules). The biggest of all, I believe is my own brain’s chemistry and built in ability, something I don’t believe I have control over and was born with (and how greatful I am for this ultimate survival gift!), but coming in second, or even on par, is my husbandly support, Theo. I don’t know what I would have done if Theo hadn’t understood my pain and my eratic injury and hadn’t supported me 200%. Seriously there were days I thought I was crazy, I kept asking myself was there an underlying reason to cause all this, I couldn’t work myself out – why the pain came, went, intensified, flared up, basically took control over me with various activities. It’s hard to explain, it’s hard to live with and I think its very hard when you have to stand by and when you can’t help change it, help stop the pain, just watch (and that’s the short of it!).

And there was Zephyr too, our Jack Russell, who was walked and exercised daily (sometimes twice a day) who suddenly couldn’t go anywhere. I hear alot how, family of course, but also pets can go out in sympathy for their loved ones, and I’m not saying this is our case, but Zephyr did acquire lower back arthritis which was very unusual for his 4 years of age just months after my accident. Also, strangely, when I was diagnosed end of last year, he showed signs of recovery and didn’t need his monthly shots (he’s still on half a cortisone tablet every second day though).

Origin of Image (OoI) continued after my fall, as I did, assuming my injury wasn’t anything serious and I’d recover in weeks. I moved my computer to a higher bench and worked alternating between sitting and standing, eventually on towels (now I know it was to soften the pressure on my heels) and I would lie down when the pain worsened… then get up again. As far as I knew I had no fracture so as long as I could tolerate the pain I kept going.

In under a year’s time I wasn’t coping and we hired a graphic designer. We hoped I’d recover in the meantime and I’d return to an upgraded 3 person studio but I didn’t and we had to make the decision not to renew our employee’s contract and instead attempt, what resulted in, an unssuccessful merger. This wasn’t a surprise, Theo and I were the only formula for OoI… we decided to put the company to sleep and not risk letting any of our loyal clients down. After having lived, worked and played from one location for 8 years Theo had to find employment, and I was home (with Zephyr), a huge lifestyle change we simply had to adjust too. I didn’t, instead I found I actually needed daily help and my pain levels were rising and capacity and hopes fading.

Theo was employed for just over a year when my peripheral stimulation device was implanted. This was my reviver and I saw a great change in my pain levels and because of this, of course I could think, I had my senses back and a bit more capacity. We realised the implant was a great opportunity for progress so we decided to pull out all stops and head to the country for a year to concentrate on my rehab. Theo was going to be around to help, I was going to focus on pacing up my activities totally, no social responsibilities, just focus… and Theo could possibly service a few clients, again hoping we were going to make some progress and come back to our darling OoI.

We came so close, we were looking for property in the healing lands of Hepburn Springs when I read The Brain That Changes Itself. Amazing having pain relief and being able to read a book, and focus, and remember, and think, it can bring incredible relief, (not to mention prevent another major upheavel) and most importantly set you back on the road towards the brilliant life you had.

Download the full story: My story of my struggle with Pelvic Chronic Pain (since March 2007)
Related Posts
My pre pain life…
The big bang injury…
The way relief started…
The way relief continued…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

‘Chronic Pain Disorder’ medical panel opinion?

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(For a further update on this issue please read Expired and fallen through the cracks)

What does it mean? Well, I’m struggling to get a clear understanding to be honest, even after being stamped with the ‘condition’ and living with it (apparently) for almost 5 years. To date, it seems to have panned out as psychological condition, gynecological condition, we don’t have to pay anymore medical expenses, blank stares, you can refer the matter to court, (and on and on it pathetically goes).

Let me explain myself further (and hopefully I might inspire some wonderful WorkCover specialist to shed some light), here I go:

From what I’ve gathered Chronic Pain Disorder basically means big general pain bucket and, its time to update the Wrongs Act 1958. And I’m stating very obvious information here because our Government has missed a very small detail… its 2012!!! So let me clear my throat… I’m going to have to make it loud… uuuuhuuuum:

Hello, anyone out there? If you are, it’s time to update the Wrongs Act of 1958 and the AMA Guidelines (1990s). Injured workers have injuries that can be addressed more appropriately, giving them a greater chance of getting back to work and lessening instances of permanent damage if the practitioners in the system can identify and use current information.

So what am I saying (and I speak from my own experience obviously)?

After my 130 week payment termination (how convenient for an injured worker to have no income during this time!!! Oh whoops, sorry, I should mention I did have the option to go to Centrelink), I attended Conciliation to dispute this termination of payments and from there was forwarded on for assessment to the Medical Panels (Medical Panels are constituted pursuant to the Accident Compensation Act 1985 and the Wrongs Act 1958 as stated on the website). I was assessed as having a Chronic Pain Disorder, basically, there is no specification for Neuropathic/Peripheral pain, or Neuralgia let alone any specific Pudendal Nerve issues or associated medical term so I was dumped in the big general pain bucket.

(At this point I’d like to break down the chronic pain disorder meaning even further. From my injured-worker-who-is-requiring-support-and-proper-treatment perspective this ‘opinion’ also means: we don’t know anything about back pain, we are not up to date, we don’t care about being up to date, too hard basket, vague, we can see you’re in pain – this’ll do)

So after gaining this vague label (and this is the second one because your WorkCover case number provides the first!), every decision the WorkSafe Agent and associated bodies, made since (or didn’t) stemmed from this opinion. So my follow up Independent* Medical Assessments (IMEs) were with Orthopedic Surgeons and Psychiatrists and yes, you guessed it if you’ve read through quite a bit of this site, they found no injury. Did anyone refer me on to a Neurologist? No. (Did I ask, yes, was I ignored, obviously or perhaps I was caught up in another case manager change over). Did any practitioner really look into my issue? No. They followed the big general pain bucket style, I was thrown in again and again.

However, some medical expenses support continued and also my weekly entitlements. Until last year that is. Firstly, the request for my wonderful, reviving peripheral stimulation device was ignored so I had to seek an answer through the Conciliation process (and yes of course my surgeon and I requested permission but as if I was going to wait 1 year for the faffing around, so I would like to take this opportunity and thank my private health insurer for paying 90% of the costs and continues to be my main medical support through my biggest progress period), and also, some massage reimbursements that suddenly died off too. Shortly after this, all remaining medical expenses were terminated leaving me with $zilch therapy support! In my letter I was told the decision was based on my ‘last’ Independent Medical Examinations (IME’s). What’s strange about that is the referred reports were exactly like all previous IME’s and I had been receiving medical expenses after those reports. This termination letter was quite sudden… out of the blue. It even ignored the most recent report that was due to come from an IME, a Psychiatrist** but had not yet been sent to the WorkSafe Agent or myself, not that it would have made a difference as the psych reports all say I’m fit for duty but it adds to the my point of poor support from this system, and makes me question the far from WorkSafe protocol of asking for a report and not using it. The decision to terminate medical expenses had obviously been made and I have no idea why and never will.

But. I have a hunch why this may have happened suddenly, and here my big general pain bucket opinion reappears. During Conciliation for the above mentioned two disputes (unpaid reimbursements, and seeking a response for the request of my stimulation device), the definition of my ‘Chronic Pain Disorder’ suddenly transformed and became a ‘Psychological Condition’. Apparently, this particular Conciliator thought that for some time, my WorkSafe Agent had it wrong and I was not meant to be having massage treatments or physiotherapy for a ‘Chronic Pain Disorder’ because it was a ‘Psychological condition’ (yes I know I’m repeating myself but that’s the way it was told, and actually repeated again, and again…).

My stomach turned when my Conciliator looked at my WorkSafe Agent representative and in a curious, happy manner said, that’s a fight for another day and continued on to resolve the mistaken unpaid reimbursements and to seek an answer in relation to my request for the stimulation device. At the time I didn’t understand it (and couldn’t for the life of me think of what might be funny either) and nor did I understand later when I spoke to this Conciliator on the phone and he repeated yet again, that I had a ‘Psychological condition’ and even added his confusion as to how a stimulation device can treat a… yes, he said it again, a ‘Psychological condition’. No where did my WorkSafe Agent or the Conciliator, dispute having paid my Neurosurgeon’s appointments???? I won the dispute for my massage reimbursements on account my Insurer was ‘honouring’ their having paid them previously but I was firmly told there would be no more massage treatments or therapy support and certainly no stimulation reimbursement. They were however continuing my General Practitioner and Neurologist’s appointments (but not treatment, get it? Neither do I!)

And the fight for another day? It came. I disputed the final decision made by the WorkSafe Agent to refuse reimbursement for my stimulation device and also tried to dispute the medical expenses termination. I didn’t get very far. Even though I had a professional Conciliator this time, my only choices were to go back to the Medical Panel for reassessment (yes, head back to 1958 and the 90’s!) or I was offered the choice of taking my WorkSafe Agent to Federal court.

My point.

Accurate diagnosis is critical to an injured worker’s support and chances of recovery. That’s impossible if our System uses the Wrongs Act 1958, the 20 year expired AMA Guidelines and unprofessional and uneducated employees.

Conclusion.

So, now I have a brilliant stimulation device implanted, it revived me and gave me the ability to research my issue and that led me to a Chronic Pelvic Pain Physiotherapist, in the General Public system (that’s right, so she’s free), who finally diagnosed me correctly (and you may have guessed I don’t have a psych condition, pain disorder, or Gyneocological condition!). I’m currently having treatment and begun to make some progress, which is giving me hope that soon I might be able to work part time again. My WorkSafe Agent has not contributed to any of the effective treatment and worse still, doesn’t even want to know about it. Of course I tried, the first thing I did when I was diagnosed was call my (passing through at the time) Case Manager to tell him my exciting news and provide the WorkSafe Agent with my Physiotherapist’s details in order to help other injured workers. In one phone call I got the following details:

  • My Neurosurgeon didn’t know how to write reports in order to get me reimbursement for my implant,
  • WorkSafe don’t want to be seen paying for implants,
  • Why would they call the Physiotherapist when she was not treating me for my work injury (back to ‘Psychological Condition’),
  • You have a ‘Gynecological Condition’ (!!!!).

I wrote to our WorkCover Minister.

And please, once again, anyone from anywhere in the system, if I have any of this information wrong or misunderstood, please make a comment. Clarify some detail, answer my queries, give injured workers some hope.

* Read my definition of independent
** I have learnt not to read the reports from ‘IME’s’ especially Psychiatrists as the awful assumptions, judgements and pathetic template style assessment really bothers me, but my husband read this particular report (when it finally arrived months after my termination decision was made) and had to share one bit of information. I was described as tall! I’m 157cm!!!!????… no, not so tall no matter how much I stretch!!

My pre pain life…

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…was bliss…. filled with endless activity and huge lists of ideas and tasks that were always completed. Who had time for a book or television (actually I still don’t make time for television)? I was active, I had capacity, boundless energy to execute my creative thoughts (and meet the expectations of a full social calendar!). I worked veeeeery long and wonderful days, I walked everywhere, lunching, dining, starting every day at a local cafe, picking up art materials, walking the dog, running the dog, to Carlton, the city, Fitzroy, I skipped through the streets of the great arrondissements of Paris when on annual holidays, and swore by my four day a week yoga routine that unravelled my body and had me feeling like Gumby warm to the ends of my extremities… There was no ‘tired’, ‘sore’, ‘fatigued’, ‘have to rest’, there was no ‘pain’. Like I said, life was bliss.

Our (husband Theo’s and my) small graphic design company, Orign of Image was in its 8th year and running beautifully, I had already had two solo exhibitions and completed most of the works for two more shows, I worked hard and we entertained a great social life (not to mention a very pricey art hobby). In fact, my beautiful printing press was delivered the day of my accident. I’ve been drooling over it ever since, only having snippets of capacity to ‘play’… (but Theo’s had great fun with it and kept my prints and art going).

These are examples of my art work. See more on my websites soula.com.au and soula.com.au/blog.

Related Posts
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
The way relief continued…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

Donate

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No donations necessary but if you are a health org and would like to support the cause I would certainly appreciate the contact. Everyone else just blab your head off if the site has been a help to you. If you can provide more information and new resources then please use the contact form and let me know. Quickly!

I can’t say it’s been a pleasure to produce this site but hopefully creating an Australian resource and awareness for other sufferers of pelvic chronic pain, and also for injured workers who are not getting any support (and hopefully escaping trouble!!), has certainly been satisfying. I know now that if I had the understanding for my issue after my accident, alot of painful time, financial upheaval, life disruption, frustration and possible permanent damage would have been avoided. But if I’ve managed to even make you laugh or give you a place you can visit very easily, when you want to have a yaaaaaaaarn or a whiiiiiiinge then the project has definitely been worth it! I hope I’ve managed that much.

I must thank my gorgeous and extremely supportive husband Theo too, for… well… um everything actually! He does it all, yep, all of it and 24/7…  good job hey? Like it? Email him or visit Origin of Image.

thank you
xx

 

Why a flower?

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Chronic pain is a waste of life’s precious time, its a huge hold up. But if you have to deal with it then you have to find a way to cope through the awful journey and survive it.  Before my precious implant (Professor Teddy I love you!!), I couldn’t move much without pain, everything hurt and it hurt all the time. And yet, my gorgeous friends and family kept telling me ‘but you look so good for someone who’s in pain all day!’ (Uum… thanks??). The flower really expresses it perfectly for me.  I have limited use of my hands because I can’t rattle myself or lift more than a kilo (on a good day!), sitting is most difficult and my legs can’t do alot as they seem to bug the issue, so here I am, planted in this life to just sway…

And please, don’t for a moment think that I don’t think of those who are more severely impaired or perhaps don’t have the support they need. To be honest, its this thought that motivated me to put this site together. I have a lot of help from my husband who is currently trying to re-setup our business from home and not only to help me, but to give me that bit of capacity for some essential Occupational Therapy (yes, to draw flowers!).

Sometimes it just helps to hear or read that someone understands you or that someone is feeling ‘like a flower’. And they can be a stranger… or even a website!

Read more…

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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