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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. Continue Reading

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!

Continue Reading

Take a seat… if you can!

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Soula's Seat Pile

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 when things are getting heated again. Continue Reading

BUY The Big Issue

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Strength in Numbers

Strength in NumbersI was on a tram with Theo last Friday, we were heading in for a weekend stay to celebrate our anniversary. Although sardined between a few people and someone in a motorised wheelchair my thoughts were on my new self and how I was going to celebrate: sit, eat, walk, up, down, sit, sit… I even planned my pacing and took an old handbag (haven’t held one for years!). My thoughts were interrupted, I could hear a phone ringing and someone muffling something, oh hang on… it was the disabled person in the wheelchair.

“My phone’s ringing… can someone get my phone, that’s my phone…”.  I finally caught the slightly slurring speech and started looking for the phone, asking for directions but all the same trying not to impose (bit tricky looking under someone’s arm!) Yep, I was uncomfortable. But I found the phone.

“Can you check who called please?” Of course I was going to check, that was an easy bit! When I popped the phone open, I had to report, “You have 64 messages” to which Theo, myself and this gorgeous person burst out laughing (and the one or two people who didn’t have their heads stuck in technology). I checked the last number and reported there was no number left.

“I’ve got to get to work, it might have been work… I have to get to Swanson Street… I sell The Big Issue”. Yes, you read right… and to top it off I was kindly informed, in just a few stops, that I could buy a calendar too! I couldn’t help myself, I asked, “Are you trying to sell me something on the tram?” We all laughed.

I stepped off the tram, obviously we bought The Big Issue, liked it on FB and on Twitter, but I also made a good few notes to myself… here’s one of them;

“BUY THE BIG ISSUE”

Australia’s first & only street paper…

The Big Issue, is a high-quality, general interest fortnightly publication that has a readership of more than 180, 000 and features arts and entertainment, current affairs, lifestyle, personal experiences and its own particular brand of irreverence…

womens.thebigissue.org.au/
thebigissue.org.au/ 

Italian lifestyle, perfecto for Pudendal Neuralgia

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Roman style Anti burst fitball (Image: Now this is what I would call an anti-burst fitball!)

I’ve just come back from Italy. I lived a dream, that’s exactly how it felt. I lived it with my husband Theo. Without him, clearly I would not have been going much further than the Italian restaurant up the road, but aside from the obvious, seems like Italy was a great destination choice.

Obviously there had to be some turning point in my Pudendal Neuralgia (PN) life if I was ever able to think about travelling again and the turning point for me was my stimulation implant.

Just as my senses returned, my dreams did too and my dreams always include travel. That’s what we did every year before my accident, it was part of our normal and fortunate life.

So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.

So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas.

I set off very prepared having had nerve blocks and begun Endep before I left Melbourne. I was taking a quarter of a 10mg tablet every second day and increased the dose gradually to 3/4 per day by the end of our five-week trip (and by then I was well and truly quite happy to sleep all day even though it was Italy outside. I had to knock 1/4 off my dose).

Five weeks, yes five weeks, with PN I don’t go anywhere, do or see anything quickly. If I’m making comparisons with the old Soula, I need much more time as each 24hr day now is equivalent to 1/3… if I’m lucky! I also have my human walking stick, Theo, and another light, adjustable and foldable one. I had a few hundred gels and insoles with me and left any kind of shoe with a heel on it at home (along with any handbags which I ditched a while back anyway). I also took my ice pack and made sure I didn’t need to carry anything. Yes, you guessed it Theo carried everything, he resembles a mother with a baby bag! Our destination and time of travel choice, Italy in spring, was based on being able to wear light clothes (winter garments add weight which means pain) and accommodation was booked in city centres to avoid any daily commuting. Continue Reading

To block or not to block…

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Healing at Boboli Gardens (Porcelain Museum) FlorenceBlock!!! Absolutely, completely, totally but only if you know where…

I have to stress this post completely relates to my condition and my personal issue with Pudendal Neuralgia. I also have to state that while I document my treatments and their effects it is difficult to know whether the effects will last. That also explains why my post is written so much later than my first nerve block (Dec 2011) and will end with ‘stay tuned’.

December 7, 2011

If you’ve been following my story then you’ll know by 2011, four years post accident, I had discovered, what I’m quite sure is, the second main culprit of my injury (the first being a nasty pelvic ligament), the Pudendal Nerve. A sequence of events found me in Dr Peter Courtney’s hands who suggested we block this nerve (bilaterally) and also inject both Sacro-Illiac (SI) joints with some cortisone as they were quite bulgy, especially on the opposite side of my injury (overworked poor darling!).

Nerve blocks affect us differently but the trickiest part about the Pudendal Nerve block is that it is quite painful and ideally requires a full anaesthetic which means the blocks must be a minimum of 12 weeks apart. So if my nerve block didn’t give me relief it either meant we missed the spot (hardly unlikely in my case) or that this treatment wasn’t going to work for me. I didn’t get 12 weeks of complete relief but certainly it reduced my pain and I had many moments of total relief and some random full days too. As documented many times with this condition, treatment isn’t just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It’s like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I’m travelling blindly.

The main aims for a nerve block are pain relief, diagnosis and obviously a cure. Cure happens, research tells us, if the block gives long-term relief and the nerve relearns how to behave during that time (or as I prefer to believe finally gets its sedative, has a long rest and recovers).

I feel quite lucky to be tuned in to my body and able to explain how I’m feeling and what pain I have and where. During this first block I noticed the rectal branch of the nerve was not affected so sitting back, completely on my behind with my back to a chair (not supporting my upper body on a table or my hands) would trigger the pain immediately. I’d feel a heat begin, a zinging then eventually I’d have the flare up. I explained this detail to Dr Courtney and it gave us a huge lead for my second nerve block… Continue Reading

Me, a case study! Pudendal Neuralgia-Masters Coursework

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Pudendal Neuralgia Presentation by Alesha Sayner

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! Continue Reading

Now let’s get this straight…

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Soula's pain demonstration

So, you think you can see pain hey? Or rather your understanding is, if you don’t see it then it’s not there? Please read on because people like you drive me a little batty…

Now I’m going to need to prepare the ignorant readers because they truly are in for a rude shock… so ignorants, grab yourself a chair or lean somewhere and make sure you have a glass of water on hand. For those in pain and who understand and know exactly what I’m about to say then prepare to feel the load lift and the great sense of relief. Enjoy the moment, feel the empathy coming your way and most importantly, get ready to hit that share button.

Ok so some of you have cheated and glanced further down and read my big announcement, my shock news… ignorants, I hope you were prepared and are still standing.

“Pain is invisible!!!” Continue Reading

HowToCopeWithPain.org

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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 (and some excellent resources).

I had one of these info-journeys last weekend. It began by reading Imagine: The Science of Creativity in The Saturday’s Age (Melbourne 7th April) by Jonah Lehrerare, and coming across this quote: Sleeping is the height of genius by Kierkegaard. 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 Continue Reading

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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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