Pelvic Pain – all the fun stuff

Many of us here at BiM went to the Festival de NOI a couple of weeks ago. It was fab. However, we know that most of you couldn’t make it and we thought we would briefly recap some of the talks so you can feel the passion for yourselves. Here is the first one…..

This morning in the practice where I work, I overheard a male patient telling one of the male physiotherapists about his problem: “I get pain… when I’m taking a leak… if I move him around too much… when I’m having sex, ya know, finishing up… all the fun stuff!”

This got me thinking… why is it that we are all too afraid to talk about penile, vaginal, and pelvic pain? Why do we avoid using anatomically correct terms (which, let’s face it, we all do) when talking about pain in the pelvic region? Why do so many health professionals feel uncomfortable listening to and dealing with patients with pelvic pain? Many patients aren’t even brave enough to discuss their pelvic pain with health professionals. But it is such a huge problem.

Primary care stats show pelvic pain prevalence is comparable to that of asthma and back pain[1]. In Australia alone, we spend over $6 BILLION on medical and surgical treatments for pelvic pain[2]! Endometriosis affects more people in the 15-49 age range than breast cancer, prostate cancer, diabetes (type I and II), and AIDS combined.[2] And that’s not including the other women and men with other types of pelvic pain. So, with such a high incidence and so much money put into pelvic pain, why do we not hear more about it? Everyone knows how horrible, disabling, and financially difficult back pain is; why do we not recognise that pelvic pain is just as much of a problem?

Dr Patricia Neumann tackled these very issues at the recent NOI 2012 Neurodynamics & the Neuromatrix Conference. She opened our eyes, albeit in a different way to the male streaker who graced the conference the following day, to what’s going on in the pelvic region.

One issue she explored was language. We are lacking international definitions of chronic pelvic pain/persistent pelvic pain. We can’t even decide whether we want to call interstitial cystitis just that, or painful bladder syndrome, or bladder pain syndrome. It doesn’t help that we have a social ‘shying’ away from talking about the pelvis; we have an international ‘thought virus’ that the pelvic region is too private to talk about. How many of us feel comfortable asking patients about urinating? Incontinence? Ejaculation? Masturbation? Sex? With knee pain, we ask functional questions about stair climbing, running, jumping, etc. With pelvic pain then, shouldn’t we be asking questions about the pelvic functions?

Trish highlighted the need for consistency between pelvic pain and other chronic pain conditions. We can approach pelvic pain patients with the same biopsychosocial model that we use with our other chronic pain patients. So many pelvic pain patients fear disability, infertility, and how their pelvic pain will affect their sexual repertoire. We need to be aware of the taboos, myths, and stigma of pelvic pain, and tackle our patients concerns, fears, and anxieties head on.

So what can we do as clinicians? GET RID OF THOSE THOUGHT VIRUSES. Overcome your own fear of talking about pelvic pain. Get comfortable with asking patients questions about their pelvic pain, and let them know they are not alone! Face pelvic pain with the same determination, patience, and understanding as you do with other chronic pain conditions.

Jane Bowering

Jane has an addiction to Vegemite, doesn’t eat cereal, and has recently finished her Honours in Physiotherapy degree. What is Jane doing at BiM? Jane is a part time research assistant doing lots of zapping with lasers as well as working part time as a physio in private practice.

Here is Jane talking more about her honours research project

References

[1] Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, & Kennedy SH (1999). Prevalence and incidence of chronic pelvic pain in primary care: evidence from a national general practice database. British journal of obstetrics and gynaecology, 106 (11), 1149-55 PMID: 10549959

[2] Pain Australia & Australian and New Zealand College of Anaesthetists 2011, The $6 Billion Woman and the $600 Million Girl, PDF .

Comments

  1. Nicely done Jane! Trish did an excellent job with her presentation. I love that Mick Thacker added his knowledge on the immune responses which may be affecting persistent pelvic pain as well. It is good to see the pelvis a little less ‘virtual’ it’s the way to sort out some of these barriers, I think.
    Great stuff.

  2. Ruth White says:

    Thanks for the round up on Dr Patricia Neumann’s presentation and I agree with you that people with chronic pelvic pain needs to be handled with patience and complete understanding – though I would add by staff well qualified and well supported professionally to “hold” this often vulnerable client group.

    I am not convinced though that it’s as simple for our profession as simply getting rid of out own thought viruses about the subject. Discussing the background to onset of the pelvic pain such as traumatic life events, childhood or adult sexual abuse, past painful medical procedures etc is an important part of patient management – best handled sensitively and not something to be tackled “head on” .

    Jane Bowering Reply:

    Thank you Ruth. I definitely agree, and perhaps ‘head on’ seems a bit too strong, but all I mean is that we can’t keep sweeping pelvic pain under the rug. Of course the background to the onset of pelvic pain can be just as (if not more so!) traumatic than the onset of chronic pain conditions. I think health professionals as a whole are improving in recognising, discussing, and treating the background contributing factors for chronic pain, but we are lacking a bit when we deal with pelvic pain. These issues do need to be addressed, and I do think they need to be addressed head on, but definitely in a sensitive manner!

  3. Jessica Danko says:

    Well done on a great article. I wasn’t at the conference but have heard great positive feedback. I am the President of an Australian pelvic association and I am keen to promote and support this cause. This needs to be demystified. We all have pelvises. We can all suffer pelvic pain. One in five pregnant women suffer pelvic girdle pain. It’s time to tackle this issue.

  4. Jen Langford says:

    Nice blog Jane. Pelvic pain sufferers commonly spend 8 years on a roller coaster of diagnoses and specialists before getting the correct management (whatever that is)….imagine what that does to the biopsychosocialsexual being!
    Trish did a fab job and thanks to NOI for really giving pelvic pain ( the silent one) a big loud voice.

  5. Thanks again to David Butler and the NOI group for organizing the Festival of Neuroscience Gastronomy, aka NOI 2012 in Adelaide. An even bigger thank you to NOI for putting the pelvic region “back into the body” and into the limelight as it received honourable mention in David’s opening remarks, an extremely well-done platform presentation by Dr. Trish Neumann, and two workshops dedicated to the biopsychosocial aspects of pelvic pain (not to mention our guest streaker)! With regards to terminology, we need to move away from end-organ dysfunction and move towards broader terminology for chronic pelvic pain based on its functional limitations. The pelvis is the most wonderfully complex area in the body next to the brain, and rivals all regions of the body in its multifaceted functions inlcuding sexual, urological, gynecological, circulatory, biomechanical, and gastrointestinal function. When my patients come to see me, I like to joke that they have collected multiple “V” words (and I don’t mean vagina) from many medical professionals including vulvodynia, vaginismus, and vestibulodynia to name a few. Instead, we need to label the problem by its functional limitations, ie. Urological persistent pelvic pain (I can’t pee!), Sexual persistent pelvic pain (I can’t have sex!), Persistent pelvic girdle pain (I can’t walk!), Gastrointestinal persistent pelivc pain (I can’t poop!) and Gynecological persistent pelvic pain (I can’t have babies!). This will allow us to get better multi-disciplinary agreement based on the patient’s functional limitations; we can then assess the multiple layers of nociceptive input (myofascial, visceral, circulatory, neuropathic etc) in a biopsychosocial framework , as well as central sensitization (this is a very important area of the body to protect after all!) to help us understand the mutli-dimensional output expression of the brain including pain and loss of function.

    Jane Bowering Reply:

    Brilliant – I like your idea of labelling the problem by its functional limitations. That makes a lot more sense in my mind, and I’m sure it will for patients too!
    Now we just need to figure out how we can reach an international consensus on the issue…..

    Sandy Hilton Reply:

    There is an effort to get international and interdisciplinary discussion mostly through urology groups but also within the International Pelvic Pain Society and IASP. There is some consensus although there is limited discussion of the role of the brain in persistent pelvic pain:

    A Multidisciplinary Consensus Meeting on IC/PBS
    Outcome of the Consensus Meeting on Interstitial Cystitis/Painful Bladder Syndrome, February 10, 2007, Washington, DC
    Michael B Chancellor, MD
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1892629/

    There needs to be more discussion, and I encourage general Orthopedic Physios and others to screen for pelvic pain, and then refer to pelvic health specialists. I would like to see my persistent pelvic pain patients within the first year of onset instead of the standard 3 + years of pain and functional limitation. Carolyn and I wrote a 2-part Clinical Commentary about using a biopsychosocial approach with pelvic pain and some (pre-evidence) ideas about what one might do to use graded imagery/graded exposure with pelvic pain… published earlier this year:
    http://journals.lww.com/jwhpt/Abstract/2011/09000/The_Puzzle_of_Pelvic_Pain_A_Rehabilitation.3.aspx

    http://journals.lww.com/jwhpt/Abstract/2012/01000/The_Puzzle_of_Pelvic_Pain___A_Rehabilitation.5.aspx

    They are likely pay-walled, sorry about that.

    Jen L Reply:

    Carolyn you too are to be commended for your valuable NOI workshop. I also like the functional approach to labelling, but it is tricky. Labelling by function makes sense theoretically, except that most of these patients will then be labelled as “sexual-gynaecological- urological-musculoskeletal-gastrointestinal pelvic pain” as they often have central, peripheral,and viscero-somatic sensitisation, and multiple functional limitations. Persistent Pelvic Pain is a good general start for patients, to cover multiple subsets of pelvic pain. We dont necessarily subtype other peripheral chronic pain states nor CRPS by functional limitation, but by anatomical site.
    Similarly, in a discussion at one of the NOI workshops, it was suggested we needed an ” Explain Pain” text for the pelvis. We dont have an EP for the foot and elbow and jaw. The science of pain applies, be it pelvis, back or hand. We need multi-discipline skilled pelvic health clinicians that can tailor management to the site, with consideration of this wealth of pain science, and apply it functionally and in the individual context ( biopsychosocial).

  6. I have been a Board Certified OB/Gyn for 40 years and over the past 10 years have developed an assessment and treatment program for chronic pelvic pain (CPP). Our practice is in Bethlehem, PA, USA, and is called: “Women’s Health, Pelvic Pain and Sexual Wellness”. Over the past 2 years I have been working with Alex Milspaw who is on her way towards a PhD in Human Sexuality. We both heard Lorimer Moseley speak in Philadelphia last year, and have been incorporating “Explain Pain” into our educational and therapeutic program since then. Here in the US, CPP affects about 30 million women and an unknown growing number of men. We are now seeing more male patients for such things as pudendal neuralgia, erectile and ejaculatory pain along with the typical pelvic floor dysfunction (clenching – that we see in virtually all of our female patients) with varied diagnoses of vulvodynia, IBS, Painful Bladder Syndrome, vulvar vestibulitis, endometriosis, etc. We find that many of our patients have suffered multiple “traumas” including sports injuries, multiple surgeries, accidental injuries including coccygeal and straddle injuries as well as histories of abuse. Here in the States, most docs associated with the pelvic organs know very little about pain processing and most “pain management” docs avoid bladder, bowel, reproductive and sexual function like the “plague”. I tell many patients that I actually won the anatomy prize in medical school but then practiced Ob/Gyn for 30 years without remembering that there were even muscles, nerves and ligaments in the pelvis. In many ways, CPP is worse than most other chronic pain disorders because it ultimately isolates and ruins relationships more than others. I am so pleased that you all are bringing up the subject of CPP and hope we here in Pennsylvania can help contribute to this conversation. We have seen patients from at least 10 different states and communicate with others out of country as well. Specialized pelvic floor physical therapy – myofascial and otherwise – is a constant in our treatment regimen as well as aggressive treatment of the “danger triggers”, the neuropathic and inflammatory pain itself and as much mind/body work as needed to turn the “dial” down on the central sensitiaziton. My own personal mission is for bringing this “out of the closet” and educating younger women, men, health care professionals, school nurses, parents, trainers, and coaches, and many others in order to prevent later severe disabilities. Please see our website: http://www.instituteforwomeninpain.org Dr. Echenberg

    Jane Bowering Reply:

    Thanks for your comment Robert. Sounds like you’re all doing a fantastic job over there! I’d be interested to hear how your patients respond to “Explain Pain”? Trish did broach the subject of using “Explain Pain” with her pelvic pain patients and how some didn’t respond as postivitely as in some other chronic pain conditions. She put it down mainly to the images in “Explain Pain” being male, and that most of the stories of chronic pain conditions involve some sort of initial injury, whereas CPP usually doesn’t. What are your thoughts on the responses of your patients? Do men respond better?

  7. Great sequence of comments. Last year I had the great opportunity of treating a patient who demonstrated the potential power of the brain in being a significant partner in both assisting in the management of pelvic pain but also being a significant block. I had a patient who was experiencing phantom anus pain. She had her anus removed several years ago after multiple years and many painful surgeries for colon disease. The anus and lower colon were completely removed and the orafice was sutured. The musculature was completely removed. She had horrible pain that had not responded to all normal and extraordinary management attempts including complex neural ablations. Sexual activity was very painful and her life had been miserable. She and her husband were an elderly and very close couple. On evaluation the area was allodynic. Interestingly she stated that when I asked her to visualize a bowel movement and actually try to perform one ( impossible due to the illiostomy) pain could decrease by 50%. Pain would rapidly return. We talked at length about the neurobiology of this response which the patient and her husband grasped it well. We tried to use recognise- backs but that did not work well. As we attempted to use magazine cut outs of buttocks and discussed trying to use sensory discrimination in the area or find other ways of advancing the process, we immediately ran into cultural and religious taboos that halted the process. The cultural taboos about the area prevented any further discussions on how we could adapt the process through changing images, sex of the therapeutic provider, and any further imaging of any activity involving the area. Changing neurotags for pain is difficult enough. When those tags closely intersect in with areas of the body that have such deep societal, religious, cultural, and emotional neurotags, management is very difficult, far beyond my ability to work with even when I worked with a group of psych professional who were supportive. The patient went on to have more procedures and was thinking of a spinal stimulator. At times our abilities to manage these types of difficult patients are difficult at best if not impossible. It does not mean we do not try.

    Jane Bowering Reply:

    Such a great example of the massive struggle we face with these patients, John! How interesting that a bit of motor imagery could help to decrease her pain by that much.
    Have you heard anything more from this patient?

    Ruth White Reply:

    Hi Jane and the team
    I have been reading these posts with interest and enjoyed reading Sandy Hilton’s paper which I followed up and read today.
    I am concerned however whether there may have been an inadvertent breach of patient trust and privacy with JohnB’s post about his particular patient with many identifying details scattered throughout the post. The post makes no mention that consent was given to share the case details. I hope he received her written permission to post such intimate case details on this public website- if not, then the post ought to be taken down. Our pain service (HIPS) directs many patients to this website for wise, evidence based posts and conversation and I would not like to think that physiotherapists (and others) forget their ethical responsibilities not to speak about patients with others, unless given written formal consent- even in an educational sense as here. Perhaps it would be worth reminding those who post to “blend” their patient stories and post more generic case histories to share.

  8. If this appears twice, please forgive me because just as I sent this off as I lost internet connection. I have tried to recreate it.
    I have to agree that Ruth raises a very good issue. Communicating about patients, be it for training, publication, blogs, mentoring, or just problem solving with other colleagues poses real problems when dealing with pain using a GMI or biopsychosocial approachs. The pain neurotag does not exist in isolation from the neurotags for past experience, personal preferences, beliefs, fears, and emotions or the neurochemical envirnments produced by the present societal elements going on in a patient’s life at that given time. All of these neurotags intersect and interact creating a complex web of contextures that need to be identified as best we can to understand the patient’s pain experience and develop a management strategy. I wish that I had a large pool of patients who I could segregate into generic groups for discussion. Most of my generic groups consist of n’s of one or two individuals. When I learned and taught Mechanical diagnosis and Therapy generic categories were easy to identify and discuss since what happened above O,C1 was not really relevant to identifying the responses to repeated movements of the spine. In treating chronic pain and especially in treating this patient, what was happening above O,C1 is critical. Those things that are happening above that level, however, are characteristics that define individuals.
    How do we get around this.? I have talked about the characteristics of this individual with other practioners in terms of my own learning, problem solving to improve care, and mentoring other therapists. I have also done that with other patients. L, Tim, David and others do that in their teaching and writing because it makes their presentations real and valuable. In presenting those patient examples there are individual characteristics ( Hammerhead) that are very identifiable even though names are not used. Do we need to get a release immediately for each individual we treat for fear that identifiable characteristics are bound to appear when we go through discussions with other colleagues?
    This is an important issue. We can not discuss how to treat pain patients without relating identifiable characteristics of individual patients if we are to make our communications about our experiences real and relevant. I wish that the human condition called chronic pain were more simple and generic. The more I learn, the more I treat, the less generic it seems.
    I would like to know how others understand this problem and deal with it. It seems like it is something that is important to talk about because it is critical for relevant communication and training. Thanks Ruth for the observation. JohnB

    Jane Bowering Reply:

    Great discussion. Ruth you do raise a very valid point.

    I do have two comments though… first, as a recently graduated physio, I find patient examples like the one John gave to be invaluable to my continued learning. If I haven’t experienced a certain patient presentation, I still find I can learn a lot just by listening to other people’s experiences in dealing with interesting patients.

    My second comment would be that I think there may be more patients with similar ‘phantom anus pain’ in the world than we think. These are the patients who we keep hush-hush… CPP as a whole is kept hush-hush… how many patients would present with CPP if we stopped sweeping it under the rug?

    Maybe John’s post isn’t as identifiable as we would think?

    Some food for thought!

  9. Lois Van Leuven says:

    I am not a Dr. like the rest of you. I am a patient of Dr. Robert Echenberg in Bethleham,Pa. USA. I just want to say “thank you” for the work that you are doing in the area of the pelvic floor. I was diagnosed about four years ago at the Mayo Clinic. They told me to go home and live with it. I thought I had been given a life sentence, the pain was so bad. My Gyn told me he had heard of Pevic Floor Tension Myalgia, but did not care to know about it. I left him to find another. In my search, I found Dr. Echenberg, who is a wealth of information in this area. He certainly was my savior in my time of need. With Mayo Clinic just telling me to go home and tough it out, I’m glad there are those like you who are taking this seriously and doing more research. As this gets broght to the forefront and gains attention, hopefully patients like myself will be taken more seriously, even by places like Mayo Clinic. Maybe they were emabarrassed to talk about the pelvic floor,too, who knows. Anyway, thank you again for taking on a difficult task.

    Jane Bowering Reply:

    Lois, it is fantastic that you are so willing to share your stories and experiences with us so freely. It is great that patients can share their success stories for others to hear – it lets people know they’re not alone!

  10. My evolution involving my own understanding of chronic pain began soon after I began researching how to develop a non-surgical approach to Chronic Pelvic Pain (CPP). About 2001 I began reading every reference I could find on pain assessment and management and realized quickly that I knew almost nothing about “chronic” pain and the research that was beginning to emerge during these last 10-15 years. Then reading as much of the literature on functional pain disorders, and joining the IASP and the IPPS, I started putting the pieces of the puzzle together and began approaching pelvic pain in a much different way. I have note books full of references on CPP being looked at as a CRPS and hearing such experts as Daniel Clauw from Univ of Michigan and others talk on pain processing and neuropathways. I began reading the Journal “Pain” several years ago which I am finally starting to understand. I outgrew what the Gyn department seemed to want regarding a CPP program and so opened my own private practice once again to specialize in “Women in Pain”. My program allows for me to spend 2-3 hours with the first eval, physical exam, and mapping a therapeutic regimen. I have cared for close to 1000 patients over the past 6-7 years and I find that there is a degree of generic commonality in most all these patients. Years of searching for answers with multiple specialists, surgeries, and invasive studies, and therefore suffering from not just their specific physical pain issues, but are loaded with anger, frustration, anxiety, and doubt that anything will help them. I began “explaining pain” at that first visit to patients as best as I could in terms they could understand and showing visuals of muscles, nerves, ligaments, and diagrams of the metaphor of a “volume” dial being turned up in their nervous systems, and that the main diagnosis was “pain itself”. I then developed a triad of treatment approaches involving 1. Find the “triggers” – both visceral and somatic and aggressively treat what we can (IC, IBS, Vulvar and upper tract gyn pain issues, etc.) 2. Treat the Pain adequately by any means that may work to bring the “volume down” (not with just pharma but a myriad of techniques and modalities to lower pain, danger, anxiety, etc.) and 3. Treat the inevitable neuro myofascial “fight flight freeze or shake” phenomenon that we as primates autonomically and automatically use to Protect us from “the kill”.
    Then I heard Lorimer speak and it was like a “stamp of approval” for all those things that I had been evolving in my own education over the past decade. Reading the brilliant comments of others on this blog is also extremely validating… We are half a world away – yet struggling with the same challenges with understanding those in such pain and suffering.
    Yes, there is a whole spectrum of how patients respond to this approach, from total doubt and skepticism to others who grasp the ideas very quickly and run with them. Nonetheless, we persist in our management program at all levels with more and more explanations of what is happening in their ongoing pain experience with the “explain pain” model. Sometimes weeks or months go by before people start to realize they can begin pulling back from the dissociative patterns that always develop when pain persists long enough. Then it is a pleasure to watch their incremental transformations – makes it all worth it.
    I can’t answer the question of whether their is a gender difference in how people respond to explain pain with CPP. My numbers are about 950 women and only now about 20 men. I sense there is a difference in cognitive and behavioral ways, but way to early for me to comment… perhaps as a male physician, caring for men for the first time in decades, my perceptions need to be factored in.
    Most of you probably have heard Lorimer’s story about the deadly snake bite he experienced. I have a very interesting personal pain experience that examples the newer findings that reflect the “mirroring” effect and my own “neruotags”. Will tell the story next time. Sorry for the length of this message…. Robert

    Jane Bowering Reply:

    An interesting journey, Robert. I am very lucky to be involved in research in the pain/chronic pain area, and have some fantastic resources at my fingertips. It is great to see clinicians like you pushing yourself to learn and understand chronic pain better and put this into clinical practice. It certainly isn’t an easy subject to cover!

    I am really interested in the demographics of people you have seen over the years. Do you think women present more than men with CPP because of the additional biopsychosocial factors like having children? I’m sure the additional ‘problems’ like endometriosis that affect women only would skew the demographics of CPP too.

    I’d love to hear your experience – I know it is my own experiences that motivate me to learn more and challenge my thoughts on how I treat my patients.

    Robert J. Echenberg, MD Reply:

    Jane, the demographics of our population of pelvic pain patients are consistent – as far as reproductive aged women – teens through menopause. There is a high percentage of younger women (under 35 or so) that appear to have a significant history of participation in competitive sports activities in their early years – childhood through college. Many women in the US have been involved in more aggressive sports over the past 25+ years because of funding for female sports that came from the government here over the years. So I disagree with another person on your blog who thought that pelvic pain is not as associated with physical injuries as other types of back neck and extremity pain. The pelvic region takes a great deal of punishment in virtually all sports, dance and other physical activities. The pelvic region also houses the 3 main organ systems that are functioning or dysfunctioning 24/7. IBS, Interstitial Cystitis, and Endometriosis all are common conditions and add major “triggers” to the central sensitivity in these patients. Pelvic region is the “busiest” area of the body and most clinicians lose sight of how many muscles, nerves, and ligaments are in that region as well.
    As to gender differences in pelvic or general pain issues, there has been a great deal of study on that…. many biologic differences in the actual processing of pain itself. Female hormonal cycling affects chronic pain in general from migraine, fibro, arthritis, etc. for a number of reasons which are still being worked out. Estrogen enhances neurogenic inflammation as an example.
    There really is an explosion of information constantly evolving on chronic pelvic pain and I only can hope that much of it starts to filter down to the average clinician dealing with pelvic maladies.