Treating the whole enchilada

The people I distrust most are those who want to improve our lives but have only one course of action.

Frank Herbert (1920 - 1986)

I get emails from patients from all over the country, sometimes from around the world. Recently I had the opportunity to converse with a women whose story was very different from what I often hear, but is worth sharing, largely because this could easily happen to anyone with similar problems.

Here is an excerpt of her story:

“I went to a PT for a back/rib injury. She saw on my medical history IC and another condition I have. She said "we're going to ignore those and just focus on the ribs" and asked me nothing about it. It was a huge red flag to me but she seemed so confident with helping my injury that I got pulled in. On the second visit, as soon as I walked, in she very quickly rushed me onto this huge machine. It caught me off guard so I just hopped on and immediately my urethra hurt. I told her and she ignored me and went on with the instructions. I should have gotten right off but slouched down to take some pressure off the urethra. I didn't realize this was a bicycle- looked different and had a big seat, also recumbent. I have a severe case of IC and have had it for 21 years. I tried to ride a bicycle about 7 years and after a few rides and even trying different seats I got very flared up. Been in peri-menopause for 3 years now and my IC is worse in many ways and affected from it, so maybe that's why this was worse than the regular bike. I flared up very badly. This was 2 weeks ago. It hurts to sit on any chair, even the couch. A few other times with very bad flares I have had the same thing but usually only with my hard kitchen chairs, not the couch too.”

The lack of compassion displayed by this physical therapist surprises me, but the lack of education does not. This is a sad, but useful, warning to others that may need to seek help for conditions unrelated to IC. There is a lot of conversation on the IC and pelvic pain forums about how difficult it is to find a physical therapist trained to treat this condition. Finding a PT that is aware of it enough to effectively treat other conditions is just as difficult. This is largely a problem with how we are educated. Until about five years ago, physical therapy schools ignored the pelvic region. Some very proactive schools discussed post-partum rehabilitation. Our school made us buy a very expensive book on “Physical Therapy and Urogynecological Conditions,” I didn’t take it out of the wrapper until 3 years after graduation. Most of my class returned it for full refund. Now, many schools are incorporating a segment on pelvic conditions, but in most schools it is minimal and primarily focused on incontinence.

Our basic education teaches us how organ dysfunction (kidneys, bowel, liver, etc) can mimic or mask musculoskeletal pain. We are taught to screen for these things, so that we are not treating intractable low back pain that could be caused by a severe kidney infection, treatable with antibiotics. But I have never heard an instructor or PT (outside the world of pelvic floor PT’s) say – “Sitting with your low back rounded, working the hip muscles on a wide, flat seat can really cause a flare-up of urethral pain.” For PT’s that don’t work with this population the two seem totally unrelated, and it isn’t even on their radar screen to think about. For those of us that do, it seems elementary.

So what can you do?

• Always – communication is key. Unfortunately for the women in this example, the PT wasn’t listening enough to take her pain seriously. Remember that YOU are the expert about your body, especially when your condition is outside the expertise of your caretakers.

• Having someone trained in pelvic floor work is optimal. Most of us that do this did not start out as pelvic pain specialists. We have widely diverse backgrounds, having done some other type of physical therapy in “a former life.” I did Sports and Orthopedics for years, and am still very comfortable treating orthopedic injuries.
  

• Many places throughout the country are developing “Women’s Health” programs. If there is a clinic with a program in your area, start there. Chances are you won’t be seeing the pelvic pain PT, but at least there is one handy for your therapist to talk to, and get feed-back from

• Bring literature about your condition. There is no guarantee that they will read it, and they certainly won’t have time right then, but any chance to educate even one more health care provider will help increase awareness.