An open letter to my patient’s previous therapist(s):

I’m currently seeing a patient of yours – a young person who is having some pain in their pelvis.  I am quite aware that often times our patients hear something different than what we say, and sometimes what they recall being told isn’t entirely accurate.

During the initial evaluation, the patient shared some past experiences and noted that there was short-term relief, some variation of symptoms which was taken as a sign of progress.  This made me very happy, as it was felt therapy in the past had made a slight, but positive, difference.

Then we spoke of what goals they had for therapy.  Other than to stop hurting, this patient wanted to run, do CrossFit, go to college and ride a motorcycle.  To me, these goals sounded amazing and perfectly achievable.

It broke my heart when they looked at me with surprise and disbelief.  They had been told to not to go to college but to stay close to home.  To sell the motorcycle and use the money for something that ‘wouldn’t make them worse’.  To not do CrossFit as that was too intense and would certainly increase the pain.

I don’t often share my feelings, but this outrages me.  Our only job as Physical Therapists is to help people do what they want to do.  That’s it.  We go to work every day to help people do the impossible – walk after a spinal cord injury, return to work after a stroke, regain independence after catastrophic medical or traumatic events.  If you don’t believe in the resilience and strength people have, and you don’t think people can get better, why on Earth are you in this profession?

But before me sits a young person, with no identifiable medical condition.  They just hurt.  And a colleague in my profession told them to give up. To be careful. To stop doing anything that might increase pain.  Remarks like that are the opposite of our job.

I can understand the desire to help and to protect people from more pain. However, that’s not how pain works.  Pain is an experience a person has.  We know that doing things you love can make people feel better.  And you’ve stolen that away from this person – by making them scared of the very things that could make them feel better.  Or at least feel more like them.

I wanted to bring to your attention that the people who don’t come back aren’t always ok.  That sometimes they’ve gone elsewhere because they want to do more than ‘not hurt more’, they want to live.  I’m not sure I can help this person recover, but I can promise you I’m unscaring them as best as I can, so they can get back to doing the things they love.

Thanks in advance for trying to stop scaring people in the future,

Sarah

Pelvic Health PHODA - What is it and how can it help?

Finding the “right” areas to address when working with any patient is a challenging task for a health care provider. What is important to that patient? In what area can we work to make progress so that there is a meaningful change and impact for that individual? When the patient is open, shares, and can pick out a specific activity or experience in which they would love to engage in again or for the first time all I must do as the provider is listen. But what can I do when the patient cannot articulate their goals because there are too many things, or it has been so long that all they want is for the dysfunction or pain to end?

That is when I use the Pelvic Health PHODA (Photographs of Daily Activities). Sandy first gave me the idea to create a PHODA for pelvic health after we discussed the original version during a course by Cory Blickenstaff. She had been wanting to have one for several years but had not yet found the opportunity to create the cards. A little while later I found myself stranded on my way back to the clinic from my home in Northern Michigan just after Christmas. My car broke down and instead of going to work for the next few days I headed back home until I could find an alternate route to Chicago. When I told Sandy about being stranded she said, “Work on PHODA”.

To begin I did some research on what versions of the PHODA exist and how they are used. It has been validated for use on patients with high and low levels of Kinesiophobia (Trost et al, 2008) where the modified version was used. This version has 20 photographs compared to the 100 in the original version. There is also a version that was recently validated for use with the pediatric population (Verbunt et al, 2015). This version looked at activities specifically important to youth with musculoskeletal pain and how harmful they perceived certain activities.

During my search I found the modified version, the original was by Kugler et al, for download on-line. My impressions after un-zipping, installing, and using the file were not positive. The background is a horrid mustard-yellow, the pictures are small and outdated, and you have to use all 40 images in order to complete the test. The experience was off-putting with the nauseating color scheme and the repetition of similar images that all had to be placed on a scale.

What I envisioned was a tool that would allow patients to pick images out that resonated with them, how ever many they would like, and then lay them out in terms of easiest to hardest. This then serves as a tool for the clinician to focus treatment and for the patient to zero in on what they are looking for from physical therapy. So I set about finding pictures of a variety of daily activities that patients have reported loving, hating, or wishing they could do that thing.

When I use them with patients I say, “Here are some photographs of activities. Please pick out ones that appeal to you. Then place them from no difficulty to very challenging based on your reason for coming to physical therapy. I don’t care how many you chose but I would like at least one at each end of the spectrum. Then we will talk about why you chose each card.” I want them to feel free to pick 2 or 54 cards. Then I can use their own choices as a guide for treatment.

Eventually I would love to validate these cards and their specific use for the treatment of pelvic dysfunction. Bronwyn Thompson, PhD, MSc (Psych) 1st Class Hons, DipOT, Registered Occupational Therapist has a great article on validating PHODA for use in New Zealand.  For now I use them in conjunction with other outcome measures using the photos to gain insight and target my treatments to best serve each individual who comes through the door.

Hannah Mulder is a 3rd year DPT student from Rosalind Franklin University, doing an amazing job of applying research to her practice, as well as making excellent snacks for the courses at Entropy.  If you're interested in a set of your own PHODA for the Pelvis cards, you can buy a set now!!

References:

Trost Z, France C, Thomas J. Examination of the photograph series of daily activities (PHODA) scale in chronic low back pain patients with high and low kinesiophobia. Pain (03043959) [serial online]. February 2009;141(3):276-282. Available from: CINAHL Complete, Ipswich, MA. Accessed January 22, 2018.

Verbunt J, Nijhuis A, Goossens M, et al. The psychometric characteristics of an assessment instrument for perceived harmfulness in adolescents with musculoskeletal pain (PHODA-youth). European Journal Of Pain [serial online]. May 2015;19(5):695-705. Available from: PsycINFO, Ipswich, MA. Accessed January 22, 2018.

Kugler K, Wijn J, Geilen M, de Jong J, Vlaeyen JWS: The Photograph series of Daily Activities (PHODA). CD-rom version 1.0. Institute for Rehabilitation Research and School for Physiotherapy Heerlen, The Netherlands, 1999

HealthSkills Blog

Support for Pelvic Pain in Unexpected Places

When you are experiencing pelvic pain, or pain of any kind, you may go through a range of emotions and more than likely will have a lot of questions ranging from “Why am I in pain?” to “Is this going to get better on its own?”. These are not easy questions to answer, and finding support and the right person to ask them to can be very difficult. The following are great resources that you can use in a variety of ways. You can use them to vent about issues, get advice on a range of topics, or offer your support to others dealing with pelvic pain. Just remember that these websites are not run by health care providers so be sure to consult with a medical professional before beginning any sort of treatment recommended.

Reddit

Chronic Pain Subreddit

Pelvic Floor Dysfunction Subreddit

Reddit calls itself “The front page of the internet” and is described as a “social, news, entertainment network”. If you just browse the site casually you may not think it is the best place to share your experiences with pelvic pain. However, if you dig a little deeper you can find communities like “Chronic Pain” or “Pelvic Floor” full of supportive people who are happy to share advice on things such as tips for staying warm in cold weather to advice on post surgery recovery.

Facebook

American Chronic Pain Association

Chronic Pelvic Pain Network

You most likely have a Facebook page, and while it is great for staying up to date with friends and family it can also be a great way to connect with others living with pelvic pain. Like Reddit, there are many groups whose, members offer support and advice on pelvic pain related topics. Groups may even have meet-up events so you can connect face to face with others with pelvic pain.

Twitter

Twitter

Twitter is another social network that allows you to connect with others in similar situations. Using hashtags (the # symbol) you can see who is tweeting about things relating to your pelvic pain. Popular hashtags for those who have pelvic pain include #pelvicpain, #pelvichealth, #pain, and many others. You can reply to people who use these hashtags with advice, questions, or just to offer your support. Just make sure to keep it brief as 140 characters goes quick! Make sure to follow @SandyHiltonPT,  @SarahHaagPT, and @EntropyPhysio once you get set-up.

The internet is a great place to find support, if you find the right communities. The communities mentioned here is not an exhaustive list, but it does include places whose members are active and helpful. Make sure to contact Sandy or Sarah at Entropy Physiotherapy so they can answer any questions you may have and help you resolve your pelvic pain.

Nate Mancillas SPT, MS

What to Look for When You're Looking for Help with Pelvic Pain

Pelvic Pain can be hard to deal with.  The amazing amount of information (both good and bad, accurate and inaccurate) can be overwhelming.  How do you wade through everything and find the help that is right from you? Here are a few suggestions that you may find helpful.  Remember:  If you feel scared or hopeless, you’ve just not yet found the right person to help you.