I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.
Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!
Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.
(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)
Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.
My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.
Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.
(Excerpt from mamamia.com.au. Story by Caitlin Bishop)
Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.
“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia.
Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes.
“I had a full life, creating art, working as a graphic designer, travelling overseas once a year. I had no limits. Now, my life is 30 per cent of that,” she said. It’s been 10 years since the fit ball burst.
Soula went to the doctor, was given pain medication and told to come back in eight weeks if the pain wasn’t reduced. Yet it worsened.
“Nerve pain, of course, doesn’t show on X-Rays,” she said. “It took me four and a half years to receive an accurate diagnosis. The pain would come and go with no routine. I would be fantastic one minute; the next I was spasming, burning, couldn’t function.”
Soula damaged the way her pudendal nerve, which stems from the sacrum and is responsible for motor supply to the pelvic muscles, signals the brain. When she sits, drives, lifts something, or moves suddenly, the nerve creates pain signals for no reason.
“I tried Lyrica (anti-siezure medication), nerve inhibitors, Tramadol (an opioid),” Soula said. She couldn’t work. She tried lying on her stomach on the studio floor, unable complete more than 15 minutes of work at one time.
“I took anti-depressants but these lowered my mood overall. My pain levels shifted constantly, and my GP told me to increase the dose of pain medication until it felt better.”
Soula became dependent. “I shrunk as a person. The medication fogged my mind. I couldn’t cross the road. I had to activate spell check on my phone. I didn’t have the ability to think properly any more,” she said.
“The most horrific part of this was the breathing. I would wake up in the middle of the night and realise I hadn’t taken a breath in ages. I would take a huge breath and start to panic.”
(View the story online http://www.abc.net.au/7.30/content/2016/s4547621.htm)
Tune in tonight for my interview in regard to navigating practitioners with a chronic illness. On the ABC’s 7:30 report (yes, on ABC at 7:30)
Patient’s have a voice and patient’s can help other patients by reviewing the professionals (and not!) whom they’ve seen. Best of all, patients can do this with their own patient, laymen language.
I wish I had read ‘This practitioner helped me with my sitting pain’ somewhere on the net. Perhaps it would not have taken me 4.5 years to be diagnosed.
Love the idea of whitecoat.com.au. Love the idea of patients sharing their experiences and encouraging great care.
Most of all, it puts the patient in the driver’s seat, eliminates the pressure for GP’s to know everything which is impossible. It’s a patient’s job to look after their health issue and with resources like whitecoat.com.au that can be done.
And no, I never get paid for interviews or to plug someone’s service – this is my opinion.
Congratulations Ken Loach – and THANK YOU for giving people with invisible illnesses a voice.
Though doctors and specialists can confirm that he is indeed gravely ill, the fact that Dan doesn’t display any outward signs of sickness works against him, and a faceless assessor declares him fit to work.
After 4.5 years and desperate, Soula took a stab and emailed Lorimer Moseley who kindly replied and suggested she contact Anne-Florence Plante. Anne-Florence diagnosed Soula instantly.
Melbourne launch March 24, 2015
I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA) Melbourne launch last night. I originally met Dr Susan Evans when I was invited to present my patient story at AIM Pain 2014. I had cyber met Dr Evans prior, asking if I could include her details on this website, in fact I’ve ‘e-met’ many pain professionals this way. I never dreamt that one day they may all be in the one room together, all of us advocating for pelvic pain and helping start up a National organisation that addresses pelvic pain for women AND MEN.
If you think you have nerve pain, talk to your doctor and visit www.nervepain.com.au. Complete the online questionnaire intended to help you explain your pain and take a printout to discuss with your doctor.
Resident shares story of coping with daily agony following fit ball accident
SOULA Mantalvanos’ life was up-ended in 2007 when a fit ball she was sitting on burst and she dropped to the concrete floor.
She didn’t think much of it at the time and tried to continue her routine of yoga four times a week and regular walks, but that soon became impossible.
Dealing with chronic pain that made her feel like her “finger was stuck in a power point”, the Collingwood resident was not diagnosed until four-and-a-half years later with severe pudendal neuralgia nerve pain.
As she embarked on a journey of living with pain, Ms Mantalvanos and her husband turned their lives upside down in an attempt to find a better quality of life.
They closed their graphic design studio down (Ms Mantalvanos now works part- time) and even removed doors in their house so she wouldn’t have to open and close them.
“I’ve learned not to lift more than a few kilos, to sit a lot, get in the car a lot,” Ms Mantalvanos said. Continue Reading
New research reveals nerve pain affects the productivity and wellbeing of Australians
New research¹ shows six out of ten (59%) Australians who report living with neuropathic (nerve) pain are missing work at least once a week due to their nerve pain. Intriguingly, this is higher than those living with other chronic pain conditions such as osteoarthritis and rheumatoid arthritis (where 43% miss work at least once a week).
Pain Medicine Specialist Dr Nathan Taylor, of Sydney’s North Shore Private Hospital, explains how nerve pain is different to other forms of pain:
“Nerve pain affects many Australians. It is often described as being more severe than other pain and lasts longer than would be expected. Nerve pain feels different and is sometimes described as burning, stabbing, pins and needles, or the feeling of electric shocks. It can be associated with numbness or increased skin sensitivity.”
Celebrity chef Ben O’Donoghue shares his story of living with nerve pain as he becomes the ambassador of a new health awareness campaign called Share Your Pain, which launches today to coincide with the beginning of the Global Year Against Neuropathic Pain².
“Share Your Pain aims to increase understanding that nerve pain feels different,” Ben said. Continue Reading
We recently had the opportunity to interview Soula and gain her valuable insights.
We hope you enjoy this blog post and possibly find some useful tips.
APS: Would you describe your pain recovery journey as having a ‘turning point’?
Soula: There have been a few turning points but two main ones:
Firstly when I was implanted with a peripheral stimulation device which restored my ability to read with the much lower pain levels.
That led, shortly after, to my diagnosis which has been the key to my recovery.
APS: What 3 things would you rate as your biggest lessons in your pain recovery journey?
Firstly that my body is first and foremost driving recovery, it just needed the help of appropriate treatment. I initially presumed it was the other way around.
That everyone needs a decent explanation of what is causing their pain before they can move on with recovery. In my case that was: the pudendal nerve lives in various levels of an overactive inflammatory state. The why’s, what’s and how’s are secondary information and unique to each person and we may actually never get those answers.
That my lifestyle: Theo (husband) and creativity have been my biggest treatments of all.
The film category entries were: Get Well Soon, The Journey, Your Voice, Behind The Scenes, and Mental Health and The Hurting Strings won The Journey category.
‘This category is a personal account through the journey of health. It may be a patient’s experience, or a doctor trying to implement a new technique in a hospital. It may be the career pathway of a nurse from novice to expert or the evolution of health issue in modern society.’
I must sound like a broken record by now, but once again, I am left bewildered by my chronic pain journey and the contrasting experiences that go from excruciating pain to exhilaration. Above all, I feel incredibly privileged at the opportunities presented to me and so happy to be able to help others by communicating my story. I could not have done this without Theo, my family and of course Peter Lamont and Jacinta Cashen. Continue Reading
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.