Welcome to another Pelvic Pain Q&A.
This time I am delighted to bring you Carl Giardinazzo. Carl has been instrumental in raising awareness of chronic pelvic pain globally. He was the Director and Board Member of the Pelvic Pain Foundation of Australia for a number of years. He is also the author of the book “Core Matters, the evolution of a chronic pelvic pain sufferer.” A very personal journey through his years of suffering and is essential reading for anyone working with or suffering from pelvic pain.
I want to thank Carl once again for helping me with this peoject. I know many, many readers will find comfort in your words and wisdom
A brief intro to your current pelvic pain – what causes flare ups if any, how do you manage things now if needs be?
My pelvic pain and dysfunction was extreme for nearly a decade. It took me over 2 years to get the pain down to a manageable level [between 1 and 5] and to function ‘”normally”. It took me a further 2 years to have days and periods of no pain. I do get flare–ups occasionally. I don’t see them as negative but rather reminders as to how/why/what I am doing with things in my life. Management is based around awareness of oneself and the environmental stimuluses to me physically and emotionally at the time. I’ve come to learn that the increase in my pain is my brain telling me that I’m in some sort of danger and that I need to make a change to protect myself. So backing off things, letting things slide, breathing, meditating, exercising, switching off – these are all in the back pack when a flare-up comes knocking.
For many pelvic pain is a very taboo subject. Patients often suffer in silence. What impact do you think this has on the patient and their recovery and why does this need to change?
I found the healing process was much more efficient when I “came-out” with my condition.This isn’t always easy since Chronic Pelvic Pain Syndrome (CPPS) is not an easy thing to diagnose or even understand. Men in particular have a tendency to suffer in silence with this condition because the symptoms manifest in the most private of areas and discussion regarding those symptoms and pain takes men into an abyss of embarrassment, misunderstanding, fear and weakness. There is no easy solution to CPPS. I think Information is the key. The internet has made it easier for people to find things so hence it can play a pivotal role in the healing process. Sufferers need to be provided with a) an understanding of what they have and why, b) comfort in the fact that others have the same condition and that they will get better c) access to good practitioners who know what they are doing.
Our symptoms both began before Dr Google was available at out finger tips. What impact do you think the internet has on chronic pelvic pain patients wellbeing and recovery?
As per the points made above, I think the internet is vital in the process of discovery, recovery and healing. However, I would preface that by saying that the internet has both information and misinformation. Since CPPS is widely misunderstood and not that common, getting to those qualified and professional people who care and know about CPPS is often a challenge in itself. If the discovery doesn’t come, the healing cannot begin. Some will mask the pain with alcohol and drugs, some may do something more extreme, and some will retreat from life all together. CPPS is a formidable challenge in itself and so a sufferer needs to have information and reassurance in places and with people that can be found without too much trouble. Google, Youtube, Facebook – these are all invaluable tools given they reach men all over the world. Websites from organizations like the Pelvic Pain Foundation of Australia, Pelvic Guru in the United States, your own website in the UK, other websites from organizations all over the world – all these are invaluable to sufferers in there time of need.
You quote Lorimer Moseley and David Butler, authors of ‘Explain Pain‘ in your book ‘Core Matters.’ There is a shift towards a BioPsychoSocial approach in the treatment of chronic (and acute) pain. How might this change our previously held views on treating pelvic pain?
I became obsessed with pain during my CPPS years. I wanted to know why I had this issue and others didn’t. I wanted to know why I had to fight and pay and suffer whilst most people didn’t have to do a thing to be “normal” and be free of the condition. I learnt that pain is in the brain. I learnt that, to its best estimate, the brain will provide its host with information that will trigger a response or a change. If the host doesn’t listen and no change is forthcoming, the message necessarily has to be ramped up because the brain needs appropriate feedback that will convince it a change is underway. So when the brain has credible evidence that its signalling is being received and acted upon it may likely change the method and amplitude of its signalling to its host. Get this fact and you start to get to the meaning of pain. With me and with lots of CPPS sufferers, fear and consternation are key emotions. It’s not fear like scared of the dark or snakes and spiders, its more to do with ways of thinking about events to come and in the future and maybe even the past. Certain people with certain character traits will catastrophise future events and this worst case scenario thinking provides perceptions to the brain that you are in danger. Ones personal, social, professional and environmental position all blend and morph to form a virtual reality. These perceptions can be as vivid as true reality to the brain, so the brain steps into gear by signalling its host of the impending danger. I believe that if change isn’t forthcoming, the brain can change you physically. Hence some people get ulcers, some get IBS, some get migraines, some get this, that or the other. It’s a cause and effect vicious cycle that keeps on keeping on if a change is not implemented. People like me get CPPS. So successful treatment of CPPS isn’t only with the physical or addressing the pain, it has to be multi facetted and must have an understanding of why the brain is doing what its doing.I think this is true, not just with people who have CPPS, but with all disease.
What advice would you give to any patient who is suffering with chronic pelvic pain symptoms?
The million dollar question left to last – I can go on about this for days. In essence, I wrote the book to answer this question. However in short I would say this – If you suffer with CPPS you have to invest some time in understanding who you really are and what you really want. This is not easy since we are told from day dot that happiness comes with wealth, money, possessions, power, title, authority, responsibility, etc, etc. I was encased in this form of thinking myself – I was a classic at it! We all have to work for a living to pay the mortgage and to provide for the family and to pay the bills or grow the company – but where does it stop? How can it be stopped? If your life and/or livelihood is actually causing you stress, harm and pain how does one suddenly stop it all from unfolding and happening? With most CPPS sufferers, its the stress overload maintained over many years that ultimately triggers the physical malfunction. When its all said and done I can only comment on what I felt and what I did, as every case and individual is different. I think I was more fortunate than most since I could bring to an end the events and process that had negatively engulfed me for so long – many cannot do what I did, so there is a massive challenge for sufferers to overcome before they can move onto the road to recovery and improved wellbeing.
Thank you so very much again Carl. It has been a real pleasure having you discuss pelvic pain with me.
I hope you enjoyed this episode in the Pelvic Pain Q&A series. If you have any questions, comments or feedback I would love to her from you. You can contact me here
Pelvic Pain Q&A Series:
Sandy Hilton, Dr of Physiotherapy. Pelvic health expert
Nick Woods, clinical psychologist and sufferer of pelvic pain
Robert Wells, author of ‘Back, Sack and Crack (and Brain)’ and sufferer of pelvic pain
Jiva Masheder, mindfulness instructor
Tim Parks, author of “Teach us to sit still’ and pelvic pain sufferer
Meg Burgess, specialist nurse at Prostate Cancer UK
Bert Messelink, vice chairman of the European association of urology
Carl Giardinazzo, former director of the Pelvic Pain Foundation Australia and pelvic pain sufferer
Read my interview with Laura Rathbone on Acceptance and Commitment Therapy here