Finding a Physical Therapist

Apparently I am not the only one looking for a good physical therapist.

I have gotten several e-mails from people in different parts of the country looking for PT’s that treat pelvic floor dysfunction. The bad news is that there aren’t a lot of us out there. The good news is, there is a growing trend in physical therapy to make these conditions part of the entry level curriculum (inspiring young therapists); and, the APTA (American Physical Therapy Association) has just authorized a clinical specialty in Women’s Health, which will include pelvic floor dysfunctions. The test won’t be available until 2008, but how exciting that this area is progressing so fast.

How do you find someone now?
Start with your support groups. The Interstitial Cystitis Network; Interstitial Cystitis Association; and National Vulvodynia Association; all have referral resources, some you have to e-mail, others post the information on their sites.

The Section on Women’s Health (SoWH) of the APTA has a member directory. You will need to go to the consumer section, hit the pull down and click on “locate a therapist.” This will give you a regional map, in some cases broken down by state. Click on a name in your area. This will give you an e-mail address to the regional or state coordinator. E-mail this person with a specific question, and they should get back to you with some answers. A few cautions – not all SoWH members work with pelvic floor dysfunctions. Some are interested students, some work primarily with incontinence, or obstetrics, or osteoporosis, etc. The regional/state director should be able to match you up with someone that will fit your needs, but they do not necessarily know the specifics on each of their members.

Of course, there are really good therapists that are not on any of these lists. To be on these lists you have to provide information, or in some cases be a paying member, and not all great therapists are good marketers.

Now what? You either have a list of therapists, or you have a phone book, but you still are not sure where to go. So – go shopping. This is probably going to be a pretty long-term relationship, and you need as much information as possible before you get started.

1st - If you are cold-calling out of a phone book, the front office person should know if they do “pelvic floor therapy.” If they do, ask to speak to the therapist that specializes in pfd. You may have to wait a few days for a call back.

2nd – When talking to the therapist, go over these points:

• If you are male, or calling about a child, make sure that the therapist is comfortable (i.e. experienced) with that demographic


• If you have constraints such as traveling a great distance, having to pay out of pocket beyond your means, or limited time availability, ask if the therapist is willing to teach you to self-treat, and work within your availability/budget.


• Ask if they do biofeedback. If the answer is yes, ask if they do “down-training.” Not all therapists do a lot of biofeedback, it’s a professional preference. If they do not, it does not necessarily mean you will get sub-standard care. If they do biofeedback and you have a tight, spasming, painful, or uncoordinated pelvic floor, you want them to do “down-training”.


• How many of their patients have chronic pelvic pain? How many have pelvic floor dysfunction? These questions are redundant, but some times they trigger different thought processes in the PT.


• Do you do internal pelvic floor work? How do you determine if it is appropriate or necessary?


• Do you treat trigger points? Will you teach me to self-treat? (only ask this question if you want to be responsible for that part of your care)


• Will I have exercises and activities that I do at home? (This should be yes)


• If treatment is making my symptoms worse – how will you determine that it is time to try something new?

Once you have found the right therapist, set up the appointment, but if at all possible do a "drive by" before your appointment. Ask if there is paperwork to fill out, and if it would be OK to pick it up in advance. For one, this will help eliminate any anxiety about getting there on time, knowing where to park, etc. Mostly, it will give you a feel for the office. Are the people friendly, is it clean and pleasant? Will you be able to relax and concentrate on getting better? In short - is it a good fit for you?

If any of you find really good therapists out there, let me know, I am trying to build a database. Right now I am looking for therapists in Madison, WI; Kennewick, WA; and Charlottesville, VA.

Language Barrier

“Incomprehensible jargon is the hallmark of a profession.” –
Kingman Brewster

We, in the medical field, use a lot of specific medical terms. This allows precision in professional communication, and helps us avoid confusion. For instance – when you tell your doctor or physical therapist that your shoulder hurts, we really don’t know what you are talking about. For you, “shoulder” can mean the area between your neck and your shoulder, the upper part of your arm, the muscles around your shoulder blade, or the ball and socket joint that moves your arm; for me, it’s the joint, and the structures that act on the joint. When you say “shoulder,” I ask you to point. This is the only way for me to be sure we are talking about the same thing.

Sometimes confusion happens when medical people try to use your terminology to explain things, thinking that they are helping you, then you go see a new health professional, full of everything your doctor said, and the explanation you give doesn’t fit into our language.

It gets worse. Sometimes we use terms in one branch of medicine that have completely different meanings to someone in another specialty. Sometimes a new term will pop-up to explain a phenomenon that is getting more attention. Whole specialty areas can be established around this “new” health concern, and the term can be used by medical professionals for years before it is fully defined. Often, by the time a standard definition is established, the professionals that have been using the term are either so used to it having the meaning they assign (which may be very specific in their head, but have little to do with what other professionals understand that term to mean); or, they are unaware that there has been a standardization of the term.

This has happened with the term “Pelvic Floor Dysfunction.” There is a specific definition, and I am just as guilty as others about using my own version of the term.

Here is the real definition, as established by the International Continence Society, and published in the Journal of Neurology and Urodynamics in 2002:

• "Pelvic Floor Muscle Dysfunction can be qualitatively defined by the tone at rest and the strength of voluntary or reflex contraction as strong, weak or absent or by a validated grading system. A pelvic muscle contraction may be assessed by visual inspection, by palpation, electromyography, or perinometry. Factors to be assessed include strength, duration, displacement and repeatability."

OK – I said medical terms are specific, I didn’t say they were clear. Pelvic floor muscle dysfunction (PFD) is any abnormal quality in the muscle that affects:

• resting tone (spasm, or low-tone)


• strength (weak muscles that indicate stress incontinence are symptoms of PFD)


• duration of contraction (how long can you hold it?)


• displacement (does the pelvic floor lift, bulge, or stay in the same position with contraction?)


• repeatability (after contraction, can you relax it? Can you contract it again to the same level?).

I tend to use the phrase to indicate spasming muscles, or muscles that can’t relax properly. I am aware that weakness and low tone are forms of PFD, but I lean towards labeling the problem differently when these are the factors.

What is my point?
When your doctor or therapist tells you that you do, or do not, have PFD, ask her to be specific in her definition. Pain in the pelvic floor is often, but not always, and indicator of muscle spasm. Trigger points are active in muscle that are tight or spasmed, so if you have trigger points in the pelvic floor muscles, regardless of where they refer, you have PFD. If your muscles are weak, you have PFD. If the muscles are in spasm, you have PFD. If you contract, and the pelvic floor does not lift, you have PFD. If you can't hold the contraction, you have PFD. If you can't relax after contraction, you have PFD. If you can't repeat the contraction, you have PFD. It’s a big list.

As a physical therapist, I think that everyone with PFD, regardless of their symptoms, can benefit from pelvic floor therapy. It is a muscular dysfunction, and that’s what PT’s do. Your doctor may have different ideas, and may feel that different drugs or therapies are indicated for different PFD presentations. You certainly wouldn’t want him to give you a muscle relaxor for PFD if your presentation is weak, low tone muscles, would you? So – ask questions, and be aware that while you may both be speaking English, it is a different dialect, and patience (on both sides) is important.

Trigger Trauma

Trigger points - what are they? How do they effect me? what do I do about them?

Trigger points are small areas of tightness within connective tissue. They are typically found in muscles, but can be found just under the skin. Connective tissue is the "soft" support in your body, the tissue that surrounds muscle cells, muscle bundles and muscles. It makes up ligaments and tendons, and gives texture to skin. When it tightens it causes wrinkles superficially, and tight, inflexible muscles and joints in the deeper tissues. Anyway - not all tight spots in your muscles are trigger points. Some of those hard little knots you get in a tight muscle (go ahead, feel the muscles in your neck, I know you've got a few knots) are tender points. The difference between a tender point and trigger point is that when you press a tender point it hurts right where you are pressing, a trigger point will refer pain somewhere else.

It is still pretty unclear how trigger points are formed. Some theories are: micro-trauma (tiny tears) cause the connective tissue to tighten and scar; habitual tightening of the muscle causes them; we all have them latent in our bodies, and some trauma or pain response activates them. I believe it is a combination of these.
So what does all of this have to do with chronic pain? or pelvic pain? Well, if you have trigger points, your pain may not be where you think it is. For instance, I recently saw a patient that came to me with classic TMJ headaches and jaw pain. (TMJ - temporomandibular joint dysfunction, a painful condition of the jaw joint). This particular patient had no clinical findings to justify their pain. The dentist had cleared the bite; an oral surgeon found the jaw to be fine on an MRI, yet the patient still had pain. The patient also complained of toothache pain that was unfounded. We found trigger points in the neck that exactly mimicked the pain she was having. When the trigger points were cleared, the pain disappeared.

There are many trigger points (tp's) that effect pelvic pain syndromes. TP's in the muscles and skin of the abdomen, around the sacrum, in the muscles of the buttock, inner thigh and low back can refer into the pelvic region and pelvic floor. The muscles of the pelvic floor can contain tp's that refer to the bladder, the bowel or the labia. TP's have some pretty predictable referral patterns, but they are not obligated to conform to our textbooks, they can literally refer to any area of the body. Remember, if you have pain in an area caused from a tp, and you tighten the muscles to protect it, you may cause trigger points that refer somewhere else.

So, theoretically, if you develop trigger points in the abdomen after a surgical procedure years ago, that refers pain into your inner thigh muscles, you may not even notice either of these except a vague "gee - that's kind of tight, I should stretch or exercise more." These points refer to your pelvic floor, a place that most of us are completely unaware of unless there is a problem, here the muscles tighten, causing trigger points that refer to your bladder, which makes you think you have to go to the bathroom more often. Frequency may not be a huge problem for a lot of us, but if you are a school teacher, nurse, flight attendant, or any of the other 1,000's of people that can't go to the restroom every hour (or 1/2 hour, or 15 minutes) suddenly this is effecting your lively hood. So you try to hold it. Your pelvic floor tightens more. When you do finally get to go to the bathroom, you strain to urinate (stop that), and eventually you have a full blown, bonafide pelvic floor dysfunction with all of the pain associated. No one knows how it happened; it seems like a sudden onset, because you were functioning fine a couple of months ago.

So what do we do about it? Find a physical therapist. Someone trained in trigger point work, someone experienced with internal trigger point release.
There are a few different methods of trigger point release. They all seem to be pretty effective, and it depends on where your therapist was trained as to which method s/he will use. Some PT's will use a firm sustained pressure on the point for 30 seconds or more. Some will use a gentle pressure - just enough to elicit the referred response and hold for 8-12 seconds, until the referred pain diminishes. Remember these points did not happen over night, and often take several sessions to clear. For trigger points in the pelvic floor muscles, the therapist will work internally, either through the vagina or the rectum. Also, your therapist will work on posture, stretching and relaxation techniques to try to eliminate some of the mechanical problems that aggravate you trigger points.

There aren't a lot of PT's that do this type of work, and sometimes the travel involved is too great of an aggravating factor to justify several visits a week. Even if you are seeing a therapist 2-3 times per week, sometimes that isn't enough. Your therapist may have you work on your trigger points at home. When I send someone home with instructions for self administered trigger point work, I have them use a device to reach the internal trigger points (face it, we aren't built to do this on our own). My new favorite product is called "EZ-Magic" it is made out of medical grade glass, and has a smooth, rounded tip that won't damage the delicate lining of the vagina or rectum. It's important that you work with a therapist that will teach you how to use it properly, and of course, you should never try to self-treat until you discuss it with your health professionals.

The Elephant in the Refrigerator

Question: How do you tell if there has been an elephant in the refrigerator?
Answer: There are footprints in the butter.

How do you tell if he is still there?
You can't get the refrigerator door to close.

For many patients, chronic pain is like an elephant in the refrigerator. You know he is there. You can see (and feel) the damage that is caused. No one knows what to do about it, and no one wants to talk about it.

Chronic pain is a difficult thing for health care professionals to treat. Even those of us that dedicate our practice to helping people with these conditions often find the situation frustrating. For patients that haven't found the physician or team that really "gets them" this journey can be very confusing, and lonely. Pelvic pain conditions can be especially difficult because so few of the specialist trained to treat these organs (gynecologist and urologists) are knowledgeable about the pain inducing syndromes; such as IC, vulvodynia, and pelvic floor dysfunction. There are areas of the country where finding a professional that is competent in treating these conditions is nearly impossible, unless you are willing, and able to travel.

The good news is that there is a lot of information available to health-care professionals that are willing to learn from it. Unfortunately, as a patient, you may be the only person alerting your doctor to the need to become educated.

The average interstitial cystitis patient seeks treatment for 4.2 years, from 4.9 doctors before getting a diagnosis. Vulvodynia patients have a similar struggle. Most of us don't have the resources, time, or inclination to doctor shop; however, if you have a painful condition that is not resolving, and your doctor does not seem to be looking at new options, it is time to have a very serious discussion.

Talk about the elephant!

This is where the team approach to healthcare comes in. You are the captain of your team. If your doctor has ruled out controllable infections and the big scary things like cancer, and still hasn't found a cause for your condition, discuss possibilities. Do you need to see a specialist? A different specialist? A third specialist?

Once you have a diagnosis - you have decisions to make. Can your current team of professionals help you? If they are unfamiliar with the condition, are they willing to learn? The Interstitial Cystitis Association, National Vulvadynia Association, and International Pelvic Pain Society (see side-bar for web-sites) all have excellent physician information services. Don't write off your doctor and/or therapist if they are unfamiliar with the condition, especially if you are unable to locate an available expert, as long as they are willing to work with you and learn. Even the experts don't have all of the answers, and it is the ability to listen to the patient, and adjust treatment accordingly that brings about the best outcomes.

When talking to your doctor or other professional:

• Be informed. Bring information to share. Web addresses, articles, and books that you are willing to leave with them. They may only skim the information, but they will have it as a reference.
• Be prepared. Write your questions down. Keeping a list of questions that you can add to over several days works better than jotting things down in the waiting room.
• Be patient. Your doctor has a busy practice. If you bombard him with a million questions and info when he doesn't expect it, and has a full waiting room, the conversation is destined to be disappointing at best. Let the office know ahead of time you have a lot of questions, and plan to be awhile
• Be Firm. Your doctor works for you. If an open, compassionate dialogue is not possible, find a new doctor. There is an elephant in your refrigerator, and it takes communication to send it packing.