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June 10th, 2013 10:35 am

Sharing Barry’s experience with Male Pudendal Neuralgia

By |2021-04-25T09:58:09+10:00June 10th, 2013|Categories: About, Learn, Personal resources, Pudendal Neuralgia|Tags: , , , |


I've lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures:
 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks. Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr's names I had found, I got calls from both Dr’s the same day.

June 10th, 2013 10:34 am

How do I know if I have PN or PNE?

By |2017-12-11T09:42:18+11:00June 10th, 2013|Categories: About, Help, Learn, Professional, Professional Resources, Pudendal Neuralgia|Tags: , , , , |

Before I get into PN versus PNE, I want to first give you a brief explanation of the physiology of the pudendal nerve and the diagnosis of PN. The pudendal nerve is a large nerve that arises from the S2, S3, and S4 nerve roots in the sacrum, and divides into three branches—the inferior rectal nerve, the perineal branch, and the dorsal clitoral/penile branch. The nerve travels a tortuous course through the pelvis to innervate: • the majority of the pelvic floor muscles, • the perineum, • the perianal area, • the distal third of the urethra • part of the anal canal • the skin of the vulva, the clitoris, portions of the labia in women, • and the penis and scrotum in men. The pudendal nerve travels a torturous course through the pelvis. Patients with PN can have tingling, stabbing, and/or shooting pain anywhere in the territory of the nerve. Symptoms include vulvar or penile pain, perineal pain, anal pain, clitoral pain, and pain at the ischial tuberosities as well as pain with bowel movements, urination, and orgasm.

January 15th, 2013 4:27 pm

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

By |2017-12-11T09:42:19+11:00January 15th, 2013|Categories: Learn, Personal resources|Tags: , |

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 this 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 'hoo-ha' 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 insistant pain tune. But... I'll leave my personal details there and concentrate on some much needed awareness for my pain sisters who are out there telling their story and providing a voice to those who can't bare to speak about this awful issue, Vulvodynia. Firstly, a wonderful and supportive cyber friend, Vanessa Watson who lives in Perth and helps run the Pelvic Pain Support group with Catherine Aurubind for 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.

November 28th, 2012 7:56 pm

Take a seat… if you can!

By |2020-09-05T11:15:11+10:00November 28th, 2012|Categories: About, Blog, Learn, Living, Personal resources, The pain, Tips|Tags: , |

With Pudendal Neuralgia, or any other pelvic chronic pain issue, it can be impossible to sit pain free (let alone get away without a flare up). Of course, I'm no pro when it comes to seating, but I've learned a lot from my own experience and from listening to the 'ouch' in my pelvis. The seating I needed, was most often hand-made! (Have a look at the one my gorgeous father in law made, it's the stool with adjustable foot rest!) Although I've worn out, thrown out, tried and tested so many more seating aids, I'm showing the ones that have lasted or worked for a while. These are the ones I often resort to.

June 21st, 2012 10:46 am

Me, a case study! Pudendal Neuralgia-Masters Coursework

By |2017-12-11T16:22:48+11:00June 21st, 2012|Categories: Learn, Personal resources, Workcover|Tags: , , |

The condition and existing barriers to management and practice My understanding of a 'syndrome' is that it seems to remain myth-like until serious research is undertaken and repeatedly produces the same findings in many patients. The Research for Pudendal Neuralgia is minimal worldwide, almost non-existent in Australia. Although specialists and therapists are documenting their work Pudendal Neuralgia can't seem to penetrate its existence in Western Medicine's Bible, and so it is unrecognised, misunderstood or ignored. So when my physiotherapist at The Women's Hospital mentioned Alesha Sayner and I heard she was compiling a presentation for her Masters specifically about Pudendal Neuralgia, I jumped at the opportunity to hand over all my experience knowing this is exactly what the issue desperately needed. I was even more enthusiastic that Alesha was interested in documenting WorkCover's understanding (not) and treatment (not) for injured worker's with the issue. Thank you Alesha Sayner and The Women's Hospital for this huge first step, so crucial to Australian sufferers of Pudendal Neuralgia, such therapy for me too!

April 11th, 2012 4:35 pm

Exercising the Brain

By |2017-12-11T13:02:22+11:00April 11th, 2012|Categories: Learn, Personal resources|Tags: , |

...I feel I'm exercising my brain when I read an article that sparks more thought and leads me on a hunt for more and more information and the process all results in gold! It might not necessarily be what I was looking for but a lovely surprise nevertheless... It made me think about another possible cure for my issue (I know, very far-fetched but imagine if my brain could be programmed to make me live/dream all the activities my pudendal nerve won't let me do by night?! Imagine?!). So I went to my favorite, most trusting online resource, no, not Google, Body In Mind...

January 31st, 2012 10:04 pm

Chronic Pain Australia

By |2017-12-11T09:42:21+11:00January 31st, 2012|Categories: Help, Learn, Professional, Professional Resources|Tags: |

We are dedicated to reducing the social and other barriers to living with chronic pain.We are a group of people who are tired of the way things are for people in pain. You may be feeling quite isolated and 'over it' and feel that no one really understands your experience. You might even feel that people don't believe you. Many people tell us about these experiences. Don't despair, you aren't crazy! And you aren't on your own either. Over the years many volunteers have strengthened us so that we can work towards greater community understanding about chronic pain...

My Health Story now in your app store

MHS tablet

Pelvic Sense

GET STARTED (use ‘HELLOPS’ to get a Soula discount).

Soula Mantalvanos created pudendalnerve.com.au to advocate for people living with Pudendal Neuralgia and other invisible and chronic illnesses. Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care. The website includes topics about chronic pain, pelvic pain, pudendal neuralgia, injured workers, workers compensation, inflammation, chronic illness, patient empowerment, self efficacy, better healthcare, nerve pain, various treatments such as nerve blocks, neurostimulation implants and the courage that is required for self management. All information on this website is a account of Soula's lived experience and should not be taken in anyway as advice or recommended treatment for any other person or healthcare professional. Chronic illness is a unique experience and therefore requires better understanding and tailored care. © Copyright 2023 -    |   pudendalnerve.com.au created by ooi   |
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