Saturday, November 13, 2010

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,


☂ my fish need food


  1. Thank you so much Cora for this post--it sure did hit home with me! You put into words--in your usual eloquent, graceful way, exactly what I have been thinking. Thank you thank you thank you! BAB

  2. You inspire me back, BAB. What would we do without community ?

  3. Thank you for an eloquent, graceful, insightful post. You had me especially nodding in emphatic agreement about how patients who don't require expensive procedures just don't find the care their more billable counterparts in patientdom do. My mother with her lupus has found this entirely true, and my husband, who works with doctors and researchers in healthcare/biotech, completely and totally agrees. Thank yo for your intelligence and humor!