Getting your mind off pain by keeping your mind on pain; recording your chronic pain for in perpetuity.

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Keeping a chronic pain diary; it seems like a cryptic way to get your mind off pain, by writing about the pain, while in pain; but it helped. Being preoccupied toned the pain down. It was my attempt to survive chronic pain, to outlive it, to organize it, to put pain in its chronological appearances, record its intensities, its whereabouts.  This was my way to exert some control over it, understand it when there was no understanding known. Of course, at times, there was no sitting at the computer; chronic pain demanded my 100% attention.

My chronicle of pain paid off is when I went to the Rehabilitation Institute of Chicago / Chronic Pain Care Center. Before you’re accepted for treatment they require a written history of your pain; when, how intense, the specialists seen, record of Cat Scans, MRI’s, your state of mind … so on so on. As it was I  was not in the greatest shape to discuss my pain in a lucid chronological order; chronic pain doesn’t leave you with much mental acuity.  No problem, I handed them a print-out of my chronic pain history before they asked for it.

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CatchMyPain is a website set up for you to keep a personal pain history. If it were available when I suffered chronic pain I would have fled to it. As it was I created my own catch my pain — you don’t have to. If you’re living with chronic pain CatchMyPain is there for you;  register, sign in and begin to make chronic pain history.

CatchMyPain enables you to visualize and track your pain. By using CatchMyPain you can make detailed color pain drawings, which allow you to express the location and the intensity of your pain; specify the time of occurrence of your pain; share your pain diary (electronically) with your doctor/therapist or print it out on paper; track your overall moods; describe the quality of your pain; track events or circumstances which increase or ease your pain; track your medication and observe its impact.

Eventually you will be able to track therapies and medications and their effects. You will benefit from the insights of their pain research and you will be able to exchange best practices with similar patients!

What they get out of it you get out of it — their goal; to gain new insights about chronic pain and to improve the treatment of chronic pain based on the anonymized data from all pain diaries. (Your pain history is anonymous, your identity is deleted from your pain entries and your email is never given out.) To achieve this goal, they analyze and compare the data from the pain diaries. The anonymized data is shared with pain experts and scientists. In a few months you will be able to look at anonymized diaries from other patients too, in order to gain helpful insights.

Chronic pain begot CatchMyPain. The idea for CatchMyPain emerged from the personal pain odyssey of the CEO and co-founder Daniel Lawniczak. The pain diary CatchMyPain is being developed and maintained by the Swiss start-up Sanovation.

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A PAIN IN THE F*CKING CROTCH — A PAIN IN THE F*CKING ASS.
The Invisible Wellspring of Chronic Pain. A search for an answer, a diagnosis, a treatment in a sea of medical indifference/ignorance when it comes to chronic pain.

EPILOGUE ONE
“I’m taking my meds, taking my side effects, taking my Men’s Guards, taking my kettlebells, all 90 Lbs worth, taking them all to the grave with me. I’m pumped.”

EPILOGUE TWO
Male Pelvic Pain: It’s Time to Treat Men Right.

EPILOGUE THREE
When the touch of a feather feels like the flame from an acetylene torch. 
If you never had chronic pain you really don’t know what your missing.

EPILOGUE FOUR
Getting your mind off pain by keeping your mind on pain; recording your chronic pain
for in perpetuity.

Male Pelvic Pain: It’s Time to Treat Men Right.

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THE INVISIBLE WELLSPRING OF CHRONIC PAIN: EPILOGUE TWO

Synopsis: Having prostate cancer I had a radical prostatectomy; prostate was removed leaving me incontinent and impotent. I had an artificial sphincter surgically implanted to alleviate the incontinence. The procedure led to chronic pain, severe pain that a number of specialist had no explanation for or could locate a visible trauma.  For the complete painful fiasco, nightmare, journey and its resolution click here: “A Pain in the F*cking Crotch — A Pain in the F*cking Ass” 

When I suffered chronic pain, male pelvic pain was virtually unheard of not only by the general public but by most medical professionals. It seem male pelvic pain never made it to med school and was possibly the best held secret kept from mainstream medicine. Fortunately for me The Rehabilitation Institute of Chicago / Chronic Pain Care Center not only acknowledge male pelvic pain but offered treatment.

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The following pelvic floor treatment was experienced at the “The Rehabilitation Institute of Chicago / Chronic Pain Care Center” excerpted from my post, “The Invisible Wellspring of Chronic Pain”

Pain trumps Modesty

Pelvic floor treatment; no one else in my group gets it. I do. ( I was placed in a group of fellow chronic pain patients.)

A certified trained MPT (Master of Physical Therapy) specializing in chronic perineal pain, in my case one MPT Amy Ross, an All-American apple-pie looking, young woman from Wisconsin puts a, her finger up my ass to massage the, my anal sphincter; in doing so she examines and treats any tightness and tenderness she finds by gently stretching the connecting muscle.  You’d think, I’d think that I’d have reservation about receiving an anal massage let alone from a young women from Wisconsin. I don’t.

Kay occasionally sat in with MPT Ami Ross and I during therapy.

Picture this: in a small room Kay, my wife, sits on a chair 3 feet from Ami who sits on short stool while she moves her finger slowly, carefully, circling and probing my anal sphincter.  Her head tilts slightly as if she was concentrating on the inners of a combination lock, feeling, reading the various degrees of surface tension to find the unique combination of numbers to release the tension. I lie on a table on my side with my back to them my pants pulled down to my knees. On one occasion Amy timed and counted how many anal contractions I could do in one minute, an indication of increased elasticity and progress; when she announced my number Kay chimed in that she best me with six more contractions.  Kay, my lovely wife could not resist the chance to compete, quietly doing a set of contractions of her own. Her anal sphincter was obviously more flexible than mine.

I am internally, eternally grateful for the research and work done to understand and treat female chronic perineal pain.  Very little if any was done for males but what ever was done for women can be applied to my chronic perineal pain. Ami Ross began her career as an MPT treating female patients. Over the last several years the number of men she has treated has increased; male chronic perineal pain seems to be on the rise, along with its awareness.

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The above title is from a post from the website “The Pelvic Pain Rehab Clinic” The following excerpted from that post.
by Stephanie Prendergast and Elizabeth Rummer

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The absence of a virus or bacteria simply means a switch in diagnosis from “prostatitis infection” to “chronic nonbacterial prostatitis.” Typically, from there the doctor writes out an Rx for a few months worth of antibiotics and the drug Flomax, and the patient is sent on his way ….

… For the most part, there are four rungs to the ladder of pelvic pain treatment whether for a man or a woman. They are: working out external trigger points, working out internal trigger points and lengthening tight muscles, connective tissue manipulation, and correcting structural abnormalities…

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Despite the proven fact that PT is the best treatment for pelvic pain in men, it’s often difficult for men to get into the door of a pelvic pain PT clinic. That’s because not all pelvic floor PTs treat men. This is the second major reason men have an even harder time than women getting on the road to recovery from pelvic pain.

Today, the majority of pelvic floor PTs are women. And, many of these women are uncomfortable treating the opposite sex. For some female PTs, it simply boils down to them not being comfortable dealing with the penis and testicles. Among their qualms: What if the patient gets an erection? How do I deal with that?

Coming from a practice where 15% to 20% of our patients are men with pelvic pain, here’s our advice. If a male patient does get an erection, address it with a simple: “Don’t worry, it happens.” And move on. The bottom line is if you’re in the medical profession, you shouldn’t be intimidated by human anatomy. If you’re afraid to fly, don’t become a pilot. If you hate the water, don’t join the Navy. If you’re a vegan, don’t become a butcher. You get the picture!

Pelvic pain does not discriminate between sexes, and neither should those who treat it. Unfortunately even prominent organizations qualify pelvic pain as a “women’s health” issue. This needs to change.

For the complete post click here: Male Pelvic Pain: It’s Time to Treat Men Right.

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The Pelvic Pain Rehab Clinic, run by a number of highly skilled trained, educated physical therapist that understands the nature, complexities and treatment of female and male pelvic pain. They bridge a wide neglected gap between the patient and the medical community.

From their about page

One of the things that makes our clinic unique is that as physical therapists we focus solely on the pelvic floor and pelvic girdle muscles. The benefit of our focus is that it has allowed us to establish a deep well of experience that we are able to draw from when treating this complex part of the anatomy.

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Through the years we have worked hard at PHRC to foster relationships with providers throughout the country who treat pelvic floor dysfunction. As a result, when developing a treatment plan for our patients, we are able to include these providers.

The Pelvic Pain Rehab Clinic: Their staff.

I’ve included a list of their staff for those — you/us — who don’t quite understand what the titles stand for: MSPT? MPT? DPT? CLT? … and to realize their level of skill and dedication.

Elizabeth “Liz” Rummer, MSPT received her master’s in physical therapy at the University of Miami Medical School

Stephanie Prendergast, MPT She received her bachelor’s degree in exercise physiology from Rutgers University and her master’s in physical therapy at the Medical College of Pennsylvania and Hahnemann University in Philadelphia.

Marcy Crouch, DPT She attended the University of Southern California where she received her doctorate in physical therapy and completed a Women’s Health Physical Therapy Residency at Texas Women’s University and Baylor Institute of Rehabilitation.

Allison Palandrani, DPT she attended Sonoma State University where she earned a bachelor’s degree in kinesiology and the University of Southern California where she received her doctorate in physical therapy

Malinda Wright, MPT Malinda attended physical therapy school at the Royal College of Surgeons in Dublin,

Jackie Crowell, DPT Jackie received her undergraduate degree from Armstrong Atlantic State University in health science, pre-physical therapy. Jackie then went on to earn her doctorate in physical therapy from Armstrong Atlantic State University in consortium with the Medical College of Georgia.

Stacey Anheier PT, DPT received her Doctorate in Physical Therapy from Marymount University in Arlington VA. Her undergraduate work in Life Science and French was completed at University of Portland in Oregon. With her interest in treating pelvic floor dysfunction, she seeks clinical excellence by ongoing professional education.

 Liz Rummer (MSPT) Liz received her Master’s in Physical Therapy at the University of Miami Medical School. For the past decade, Liz has worked hard to improve treatment for those suffering from pelvic pain syndromes as well as improve community and professional awareness of pelvic pain and dysfunction.

Stephanie Prendergast  MPT Stephanie r received her Master’s in Physical Therapy at the Medical College of Pennsylvania and Hahnemann University in Philadelphia. Early in her career, she learned about pelvic pain, became intrigued, and chose to dedicate her career to helping men and women suffering from these syndromes. She is committed to advancing the field through teaching, research and clinical practice.

Marcy Crouch DPT, CLT Marcy received her Doctorate in Physical Therapy from the University of Southern California in Los Angeles. She completed her undergraduate work at San Diego State University, receiving a Bachelor of Science in Kinesiology and Rehabilitation Science. Her love for treating pelvic pain and dysfunction began in her first year of PT school and has grown exponentially as she has continued her career. She completed a post professional Women’s Health Residency program in Dallas, TX where she focused on specific issues relating to men and women with pelvic pain.

Melinda Fontaine DPT Melinda received her doctorate in Physical Therapy from Simmons College in Boston, MA and her Bachelor of Science in Exercise Biology from the University of California, Davis. She spent two years practicing physical therapy in Boston before joining the Pelvic Health and Rehabilitation

Allison Palandrani  DPT Allison received her Doctorate in Physical Therapy from the University of Southern California in Los Angeles and her Bachelor of Science in Kinesiology from Sonoma State University

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RESOURCE

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About the Pelvic Pain Support Network: The Pelvic Pain Support Network is a patient led organization with a board of trustees who are all patients or careers. As a registered charity, we are run entirely by volunteers. Their advisory panel comprises experts from across the world, including Australia, the US and France who are clinicians, researchers and health professionals with an interest in pelvic pain.

What they do: Provide support, information and advocacy for those with pelvic pain, their families and caregivers Promote and deliver education sessions about pelvic pain in the curriculum of health professionals and amongst the public. Encourage and support of research to increase knowledge and understanding of the impact of pelvic pain” There website provides: Support and information about diagnosis and treatment for those with pelvic pain, their families and caregivers Patients’ experience, managing and communicating about long term pelvic pain.

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A PAIN IN THE F*CKING CROTCH — A PAIN IN THE F*CKING ASS The Invisible Wellspring of Chronic Pain. A search for an answer, diagnosis, treatment in a sea of medical indifference/ignorance when it comes to chronic pain.

EPILOGUE ONE
Living pain free: I’m taking my meds, taking my side effects, taking my men’s guards and kettlebells, all 90LBS worth to the grave with me. I’m pumped.”

EPILOGUE TWO
Male Pelvic Pain: It’s Time to Treat Men Right.

EPILOGUE THREE
When the touch of a feather feels like the flame from an acetylene torch.