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Robert Wanek, Creating awareness for Chronic Prostatitis and Pelvic Pain Conditions

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I cyber met another amazing human being, Robert Wanek, who sadly has his own Chronic Prostatitis and Pelvic Pain story to tell… and so brilliantly does he say it, I just had to include it on my website.

You can follow Robert’s journey on his website: malepelvicpain.weebly.com

Robert, I hope you escape this world of pain forever.

Anyone suffering from prostatitis, epididymitis, pelvic pain, orchalgia, or related conditions; follow my blog. Share your stories. On my blog is a macro of my journey over the past 6 months dealing with idiopathic Pelvic Pain. 4 doctors, countless tests, no progress. To see where I’m at now you can check my blog as I will be updating daily with PT appointments, holistic treatments, lifestyle changes, and of course updates on the pain. I hope to share stories from other sufferers and any treatments and research coming out in the near future.

All copyrights to the rightful owners. I do not own the song in this video. This video is for non-profit educational purposes, dealing with a major health issue.

Social Media for Pain Education, Pain Australia

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Pain Australia Logo

Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013

Pain Australia Logo

Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website Pudendal Nerve.

Ms Mantalvanos also runs a Facebook page, mostly for consumers, and is active on Linked In, where a lot of her interactions with healthcare professionals take place.

Motivated by personal experience, Ms Mantalvanos says pelvic pain is not well understood within the medical profession, something she hopes to address by sharing her story online

“It took four and a half years to get a diagnosis for my pain,” said Ms Mantalvanos. “Everyone I saw thought it was back pain.”

After reading the book The Brain that Changes Itself, she decided to get in touch with Adelaide-based Professor Lorimer Moseley, who was mentioned in the book.

He recommended a physiotherapist in her local area, and in just a few minutes she had an accurate diagnosis – she had been living with pudendal neuralgia.

“The right diagnosis made all the difference for me,” said Ms Mantalvanos. “I’ve been able to get the proper treatment, and my pain has become more manageable.” (more…)

A Pained Life: Timing My Pain

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Excerpt from American News Report: by Carol Levy, Columnist

Pained Life CoverI was sitting at a table with some people I knew, slightly.

I did not know how much of my situation they knew, but the issue came up about my not being able to work.  I told them about the pain that comes from any consistent use of my eyes for more than 10 to 20 minutes before the pain becomes too severe for me to continue.

They immediately came up with suggestions, most of them centered on using a timer.

“Set it for 15 minutes so you will have to stop,” they suggested.

That’s a good idea.  In fact, I came up it with a long time ago.  The only problem is, it’s a lot easier in concept then reality.

I am reading a mystery, my favorite kind of story.  The book is getting exciting, the clues mounting, the name of the person “who dunnit” to be disclosed in… wait, bringgg!

Off goes the timer.  I can’t stop now.  I have to find out who did it.

I know better, but I think, as I often do, five more minutes won’t make a difference. 

But of course, it does.

Sometimes it is more important eye work, writing this column for instance.  I cannot break off in the middle.  I lose my train of thought and have to start over, which means going past the time limit the next time I work on it.

Sometimes I get to the point where I need to stop, but in order to not lose my concept, I continue making notes; which takes me past my time limit. The pain is then at the point of no return, at least for the next hour or more.

If I go to a store, I need more than 15 minutes to find what I need.  I use my eyes the entire time.  I cannot just stop.

The same is probably true for most of us.  The time allotted before the pain becomes unmanageable is usually taken up with getting ready to do whatever task is at hand.  By the time we are in the midst of doing what we set out to do, the time is up.

From the outside looking in, the answer to keeping the pain at an “acceptable” level is simple.  Just stop.  I daresay it would be easy if this was not our lives.

If it was just a a short term problem, a sprained ankle or a scratched cornea for instance, it is no big thing to keep our usage of the pained area to a minimum.  When it’s a constant pain, the timed approach is not workable.

When I try to explain that to people, I see the eye rolling, the turning away: she doesn’t want our help.  She doesn’t want to change her situation.

They have no idea how dearly I want that. (more…)

Next stop: Traditional Chinese Medicine with Raffaele Vavala

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Acupuncture6Although I’ve tried acupuncture many times before, I’ve never felt as much of a response as I am feeling now after my four sessions with Raffaele Vavala. It’s possible my body wasn’t ready for it, being in ‘the thick of it’ until about a year ago my onion was just too big!  But I also believe some practitioners do have more of a gift than others and Raffaele is gifted!

The consultation methods make great sense to me. My scans have been considered, but my tongue, palms and pulses on both wrists do all the pain and story telling. These body parts describe a system that is quite debilitated after dealing with the years of Chronic Pain, an issue Raffaele understands in-depth. So when I speak of sounds hurting, activity accumulating into a flare up fire-ball, fluid retention, my legs unable to move with extreme heat conditions, the desperation for Western intervention in the form of an implant and nerve blocks, my exhaustion that arrives with the pain and ‘protects me’ by encouraging me to sleep, the inability to focus, reach out and ‘just move that thing’ or carry out a simple task, the ability to create seeming too exhausting, Raffaele understands… ALL OF IT.  He reminds me of my diagnosing physio, and for once I’m the one staring in disbelief at their look of complete understanding for me (when other practitioners screwed up their faces or frowned at my statements). (more…)

Peeling onion layers… “No.6!?”

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Onion

Another year gone by since the pop! Now I know what practitioners mean about peeling onion layers. My onion layers have gone something like this:

  1. Removal of pelvic thickened ligament
  2. Peripheral stimulation device implant
  3. Diagnosis
  4. Nerve blocks
  5. Medication
  6. … Could it be my Traditional Chinese Medicine? (more…)

(Hardly) Happy 1st birthday pudendalnerve.com.au

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Well it’s hardly a birthday celebration! But certainly a time to reflect and assess myself and the achievements of PudendalNerve.com.au. The total visits in 12 months total an astounding 21,500 and the search terms are a clear indication that still, so little is understood of Pudendal Neuralgia worldwide.

The first note must be of thanks and of course, has to go to my husband Theo. Without Theo’s daily help this site simply wouldn’t be up and running…. neither would I!

Second note worthy thank you, and certainly something that can be celebrated, has to be the beautiful connections I’ve made in the past year. I’ve met the most inspiring, energising, kind, compassionate people, whether practitioners, therapists, chronic pain sufferers, or people attached to the pain system, you have been my encouragement and empathy. Your pain and/or knowledge inspire me to continue and get to the bottom of this dreaded pain issue in the hope of resolving it (and not just for my sake), and/or try to voice my improvements for an ignorant WorkCover system.

As far as my personal one year status goes, I definitely have ‘progress’ to celebrate; I’m running on Nerve block no. 3, refreshing my pelvis as required with a newly installed bidet, taking minimal amounts of Endep and in much less pain. Although I’m still much limited with capacity and rely on daily help and regular massage, I’m able to work a little from an accommodating home setup, thinking a lot more, delegating-delegating-delegating and finally, but not least, have taken a plunge into the wonderful world of Chinese Medicine which I believe may finally be able to reach my pain. Stay tuned for another update on that soon.

Nerve Block Cake & Candle

Here are some more specific, but also saddening, statistics that may be of interest to my subscribers and visitors (and my very loyal spies!): (more…)

Health Organization for Pudendal Education (HOPE)

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HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.

HOPEBracelets

HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE).  If you have come to this website it is probably because you are in pain or you know someone who is in pain.  Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back.

Visit the website: www.pudendalhope.org or sign up to the forum

GAIN (Gynaecological Awareness Information Network Inc)

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GAIN header

Another wonderful connection I’ve made on my daily mission for understanding Pelvic Pain, is with the lovely Kathleen Mazzella, founder of GAIN (in Perth).

Gynaecology is currently not too connected to Pudendal Neuralgia (and vice versa), but after my own experience, I believe they are connceted more than we realise. After all, there are many cases of nerve issues arising after gyneocolgical procedures, but I can also report that my first issue was in fact a nasty over grown pelvic ligament that my Gynaecolgoist removed (and with it went the extremely high sensory pain possibly releasing the pressure on the Pudendal Nerve).

Obviously progress and learning about the brain, pain signals and general medical research, will change the way we tackle pelvic pain today, thankfully!

(excerpt from the GAIN website)

Our Founder

KATHLEEN (Kath) MAZZELLA
Founder of GAIN (Gynaecological Awareness Information Network Inc)

Kath has endured the trauma of being diagnosed with, and treated extensively, for a gynaecologicakathl cancer – vulval cancer.

Kath established GAIN Inc in Perth, Western Australia,  in February 2001, when she sought a support network for women who had endured the similar trauma of a gynaecological cancer, and found none.

Many women afflicted with gynaecological conditions feel alienated and isolated. They often suffer in silence, afraid of what they don’t know, and lack the courage to share their anguish.

Whilst she received adequate support from healthcare professionals, and family members, Kath still felt a dire need to be able to share her experience with other women; to know she was not alone in her suffering and healing.

“Prevention is better than cure. Most women self-examine their breasts regularly, knowing that early detection of breast cancer can be a life saver. Most women don’t realise that their vulva is, also, at risk of cancer” Kathleen explains.

Kath was 39 years old when she was told her Pap smear showed abnormal changes in the cells on her cervix, and she would need laser treatment. The appearance of a lump in the region, eighteen months later, was not flagged by her doctor as “anything to worry about”, and after another eighteen months of consultation with two other GP’s, and two gynaecologists, Kath was finally diagnosed with vulval cancer.

To save her life Kath underwent “life altering” surgery, in an area of her body all women regard as sacred. Whilst receiving adequate support from healthcare professionals, and family, Kath realised she still had a dire need to be able to share her experience with other women, including knowing that she was not alone in her suffering and healing.

In her search to find other women to talk to about her experience, Kath found none. So she placed an advert in a women’s magazine and received 38 replies, all from women who had waited a long time to share their experiences, and who were similarly grateful to have the opportunity to break their own silence.

From a position of experience, and compassion, Kath created GAIN in response to the needs of these women. Today, a vibrant cancer survivor, she continues to lobby for more awareness, funding and research for gynaecological cancers, pre-cancers and other gynaecological disorders.

Kath is also actively involved in the community working and creating awareness on gynaecological cancers.  See more of Kath around the community…

Vulvodynia. Yes, you read right… women get pain ‘down there’.

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Pain in the pelvis can include pain ‘down there’ too… sometimes ‘back there’ as well! True! Just follow the path of the Pudendal Nerve and see where its extremities are…

I have cyber met many women who suffer with the awful condition called, Vulvodynia. The Pudendal Nerve branches extend to the Vulva, and so the condition is certainly ‘related’ to the whole Pelvic Chronic Pain issue. I personally relate to the condition after having extremely high sensory signals (almost maddening like I had my own Vulva stuck in a power point!!), up until an oversized pelvic ligament was found and resected. Thankfully that high sensory pain (and associated issues) ended for me there. Of course my Pudendal Nerve and I are still in a personal battle over its insistent pain tune.

But… I’ll leave my personal details there and rather concentrate on some much-needed awareness by joining my pain sisters who are out there telling their story and providing a voice to those who can’t bear to speak about this awful issue, Vulvodynia.

First up I’ll introduce a wonderful and supportive cyber friend, Vanessa Watson who lives in Perth and helps run the Pelvic Pain Support group at HOPE (Health Organization for Pudendal Education). Vanessa’s story was also recently published in The Sydney Morning Herald. You can also find us chatting on Facebook.

Secondly, Esther runs her ‘Mad Peach, living with chronic pain in the hoo-ha’ blog, and might I add with a great sense of humour. Read her account and many other accounts from her followers at: madpeach.blogspot.com.au.

And thirdly I’ll add a recent story, Privacy around private parts hurts women’s health, which went to air on the ABC’S 7:30 report last week.

It is certainly difficult to speak of this very personal pain but the more documentation and the more we share our stories, the more courage we give to our sisters to speak up. Speaking up means we share our treatments and knowledge and bring pain relief and quality of life. Silence will take us nowhere. Please share this post and related links. (more…)

Building blocks… I hope!

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BlockFeature

I’m not yet clear about the effects of Nerve block No. 3, but I’m calling it… I’m going to be positive… I believe I’m building! It’s just a sorta three steps forward and two back situation.. I hope.

So far, my building blocks go like this:

My current situation is a life setup based on my husband Theo’s help all day. I could not have returned to work without his help or the home/office setup we have. I’m still not driving and my weight limit goes from 0 – 3kg. I haven’t established a regular basic living routine (this includes a daily walk), still unreliable to myself!

<!–more–>

My first block lasted 12 weeks. I teamed up No. 2 with a little Endep and got to 31 weeks but I have to consider the weeks it took to kick in, the weeks wondering if the block was wearing off, and also the waiting period to get in to see Dr Peter Courtney, so that reduces the time to about 21 weeks. Let’s not forget my ‘back to work’ activity and my work setup at Origin of Image, which from a Pudendal Neuralgia perspective, is nothing short of luxurious. It’s completely reliant on Theo, and based on the freedom to be able to sit, stand, rest, nap, duck my backside into water, move around, take days off, etc, as my backside requires (and no home chores either! Theo does all that too). So basically it’s completely unrealistic. It is a great trigger to my pain but I believe its good side doubles as an aid to my treatment, after all, I feel I’m ‘working’, part of the world again, creating, partaking in our business. And let’s face it, everything hurts so I have to choose what minimal activities I’m going to do.

I’ve always said that everything counts with chronic pain (have a look at my pain score), and as time goes by, I believe it even more so. Everything I do, everything I don’t do, every little/big thing I lift, every action, the shoes I wear, the temperature my body’s at, how I sleep, whether I rest or not, how often I travel in the car or go out, everything affects my capacity. The bigger the activity I plan, the more diligent I have to be. The reason I’m explaining this is because I truly believe if it weren’t for the help I get every hour of the day, I would be in pain 24/7 and my implant and blocks would not work. I would be lucky to get through minimal living activity and ‘return to work’ would remain a dream. Chronic pain needs its match – chronic help! (more…)

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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 aggrevated 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.

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