A Letter

 Recently I composed an open letter that I wanted to send to doctors, PT's and allied professionals that care for people with chronic pelvic pain.  I worked on it for days and it was composed as a virtual symposium and I was the guest speaker.

As a nurse, I did my share of public speaking while working with children and families who faced chronic illnesses.  So, it was fun for me to pretend I had the stage talking to a room full of people who care for us pelvic pain types.  I didn't end up posting that letter or sending it out to the big group, but the exercise helped me identify the concerns I have that affect our care.  I sent a different letter to a few trusted PT's.  I hope to hear back from them.

Over the past four years of living with pelvic pain, I've learned a lot from fellow patients and we share similar frustrations and concerns about appropriate diagnoses and access to experts.  Through these conversations and my own experiences, I'll share some of the questions that I outlined in my letter.  It was primarily focused on PT.

Are there evidenced based studies available to support physical therapy for patients with PFD/PN?

 Has the PT profession considered creating a certification for the treatment of pelvic pain?

 What really defines a PT as a clinical expert in the treatment of pelvic pain, PFD/PN? 

 Is there an algorithm designed to aid in the diagnosis of chronic pelvic pain? 

 One that would help the primary care doctor diagnose and refer more promptly.

What efforts are being made regarding a campaign targeted at primary care physicians and OB/GYN's to aid in better diagnosis and referral of patients? 

Is there an effort being made to educate pain specialists in the unique needs of the pelvic pain patient?

 Is there any collaborative effort on the part of PT's to document the outcomes of therapy?    For example a questionnaire at certain intervals post-discharge from PT.  Perhaps at 3, 6, 9, 12 month intervals to determine outcomes, quality of life, functioning after PT.  Other outcome measures such as disability claims, return to work might be evaluated as well.

 I have spent a lot of time looking at the IPPS site.  When I read the bios and mission statements of the doctors there, they are quite impressive. I am wondering how active they are in pursuing these goals, as some are very similar to what I have outlined above.  I do want to say that I think the books that have been written thus far, the educational patient handouts, and few t.v spots (which were sensationalistic) seem to focus on pelvic pain as primarily a sexual pain issue, and they minimize or dismiss the overall lifestyle effects.  In addition, they fail to address the complexity of the heterogenous patient population that develops pelvic pain.

I concluded my letter with comments from the point of view as a patient, a nurse, and what I have observed as a member on some pelvic pain forums.  Generally speaking, many chronic pelvic pain patients are on their own when initial treatments fail.  The care is quite fragmented and primary care doctors are uninformed about the diagnosis and treatment options. The result is often that patients end up with significant  financial, physical and emotional costs.

I hope to get a useful dialogue going to improve communication between the specialties and improve our access to people with expertise. The reality right now, is that like many patients with chronic, misunderstood conditions, there is a dearth of peer reviewed studies,  educational materials and access to expert practitioners.  That leaves many patients running in circles like the proverbial hamster on a wheel, spending our limited resources searching for answers.  This post and that letter, is a small attempt to help us get off that wheel.

Peace, Healing, Humor

Cora

❦ feed the fish

    make a wish

                

Swearing is good for Pain !!#@##$!

I heard this study today on the wonderful ignobel prizes.  They are awards for unusual science that first makes you laugh, then think.
Had to put this out there.

Cora

Swearing increases pain tolerance

Category: Neuroscience • Psychology
Posted on: July 13, 2009 1:02 PM, by Mo

SWEARING occurs in most cultures - people swear to let off steam, or to shock or insult others. It is also a common response to a painful experience. We've all done it: after stubbing our toe, or hitting our thumb with a hammer, we draw a sharp breath and mutter a swear word. Until now, though, whether swearing actually alters our perception of pain had not been investigated. But according to a new study due to be published next month in the journal NeuroReport, swearing increases pain tolerance, enabling us to withstand at least one form of pain for longer.

Some pain theorists regard our tendency to swear after hurting ourselves to be a form of "pain-related catastrophising" - an exaggerated negative mind set which is brought to bear during a painful experience. As such, swearing is thought of as a maladaptive response, which contributes to the intensity of the pain and emotional distress. Given that it is such a common response, Richard Stephens and his colleagues at the Keele University School of Psychology set out test the hypothesis that swearing would decrease pain tolerance and increase pain perception.

They recruited 67 undergraduates, and asked to make two short lists of words - one containing five words they might use after hitting themselves on the thumb with a hammer, the other containing five words they might use to describe a table. The participants submerged one of their hands into room temperature water for three minutes, to provide a standardized starting point, then transferred it to a container of cold water and instructed to keep it submerged for as long as they could. In one condition, they were told to repeat the first swear word they had included in their list; in another, they repeated one of the words describing a table.

The researchers measured how long the participants kept their hands submerged in cold water, and asked them to rate the amount of pain they felt. Their heart rates were also recorded after they had submerged their hands in room temperature water as well as after the submersion in cold water. Contrary to their hypothesis, they found that swearing actually reduced the amount of pain felt. The participants kept their hands submerged in the cold water longer for longer, and also reported experiencing less pain, when they repeated a swear word than when they repeated a word describing a table. Swearing was also associated with increased heart rate. 

Swearing therefore enabled the participants to tolerate to the cold temperature for longer, and also caused a reduction in their perception of the pain felt. A difference between males and females was observed. Swearing led to a greater reduction in pain perception and a bigger increase in heart rate in females. Most interestingly though, the effect of swearing in females occurred regardless of their tendency to catastrophise their pain. On the other hand, in the males, catastrophising was found to diminish the effects of swearing on the felt pain. This is interesting in light of other findings which show that men generally catastrophise less, but swear more often, than women.

This study shows that swearing appears to have an analgesic effect under certain conditions. Exactly how is unclear, but the authors suggest that it is because swearing induces negative emotions. It is well known that pain has a strong emotional aspect to it. Fear of pain, for example, is known to enhance pain perception, possibily by activating pathways which descend from the brain and modulate noxious stimuli entering the spinal cord. Swearing, too, is known to induce negative emotions (according to Steven Pinker, it taps into the "deep and ancient parts of the emotional brain"). It may therefore trigger a physiological alarm reaction known as the fight or flight response, which accelerates the heart rate and reduces sensitivity to pain. 

Related:

• Mechanisms of cold thermosensation
• Distorting the body image affects pain perception 

☺please feed the fish so they won't be in pain

Every Disease has a Ribbon

Throughout my life I've been in many writing groups. I have read my share of memoir. I hear the echo of my writing instructors telling me that a good memoir is "brave and courageous." I think of Mary Karr's book, "The Liar's Club".  That was courageous.  And crazy.  Since I decided to blog, I have been thinking a lot about bravery.   And craziness.

I want to share my story for many reasons. Pelvic pain has changed my life. Anyone with a chronic disease knows that, as does their family and close friends.  I want to be honest, without being tabloid. I want to share information from my personal perspective and from my expertise as a nurse. I want to share those scary moments that I feel when I am alone with my thoughts, and let others with pelvic pain know they are not alone. I want you to know those thoughts are normal and understandable.

On my walk today, this phrase came to me. "Every disease has a ribbon."  I have worked with children with diabetes. There are walks for a diabetes cure and huge foundations to support research.  Almost every form of cancer has a month or day dedicated to awareness. Multiple Sclerosis has several fund raisers. There are organizations dedicated to studying rare diseases, but I don't think it includes pelvic pain. The list goes on and on.

 Pelvic pain just may be the "Rodney Dangerfield" of chronic diseases. It is poorly understood, and physicians in the logical specialties to treat pelvic pain- obstetrics/gynecology (OB-GYN) and urology have a very limited repertoire of treatments available. It seems to be a condition that is often met with a glazed over look from the doctor, and a condition that is very susceptible to getting "turfed."  "Turfed" is the term medical people use to pass another patient on to another specialty.  It is not uncommon for a patient to see twenty doctors or more, or go for several years until a proper diagnosis is made. In the mean-time, the emotional, physical and financial cost is great. 

I have many thoughts on why this occurs.  First of all, two-thirds of pelvic pain patients are women. Even in this day and age when much medical care is delivered by women, there is still a bias towards women and pain. Especially pelvic pain.  The majority of pelvic pain is not treated by a procedural intervention, and in our current medical climate, procedures bring in dollars. So pelvic pain patients require intensive cognitive time, but we don't bring in the bucks. Doctors simply don't know what to do with us.


I believe men suffer even more silently and they can go for years as well with mis-diagnoses.
Men may have even fewer resources than women when it comes to seeking help for pelvic and genital pain, and let's face it, they are probably less likely to confide in a buddy about this delicate problem. 


The few media shows that I have seen that featured pelvic pain focused exclusively on women and the sensational aspects of  sexual pain and dysfunction.  While that is a definite reality, what the media fails to outline, is how many patients have pain associated with sitting, simple daily activities, and have significant urinary and bowel disturbances. Who wants to hear about that ?   Most media attention has been generated by patient advocate groups like the NVA ( National Vulvodynia Association), so the grass-roots effort is starting to sprout. 


That is the good news about the Internet. It corrals people together to help each other find help.  There are a handful of doctors and physical therapists who are dedicated to treating pelvic pain and a few professional societies that support research and education. Unfortunately, it's just not enough.


I certainly don't have answers, but I do have questions.  I hope we get our ribbon soon.  But that brings up more questions, what color, what shape, circumcised , or not?


Peace, healing, humor,


Cora 


☂ my fish need food