Mind Games

“It’s mind games, and he’s already starting too early.” –

Kurt Busch

Chronic pain is a difficult burden. The effect on the lives of patients, families and loved ones is profound. Suffering a debilitating condition, especially one that is poorly understood, with treatments options whose success rates are measured in “percent improvement” in an individual, rather than “percent of cures” in a population, can be very stressful. Emotional, physical, mental, and financial stress all play a large part in the lives of those that are touched by these conditions.

I often recommend some sort of psychological counseling to my patients. I do this because I know that our minds and our relationships are often not equipped to handle the stresses that come with living in chronic pain. A good therapist will help you cope with the pain; a family counselor can help you and family members understand the effects of the condition, and work as a team to live full lives; a certified sex therapist can help you and your partner have a satisfying, fulfilling sex-life, despite your physical limitations.

With all of that said – I’m going to get on my soap-box and do a little rant about chronic pain, especially chronic pelvic pain, and how it is often viewed in the medical community.

Until very recently Vulvodynia (pain in the external female genitalia) was listed as a psychosomatic disorder. Somatization disorder and somatoform disorder are two disorders characterized by pain without pathological cause, or pain that presents as more intense than physical findings warrant. Both of these conditions are a sub category of hysteria, a psychological condition. On a historical note, hysteria literally means “wandering uterus.” It was often diagnosed in the Victorian era as a condition in which the “humor” or essence of the uterus wandered around in a women’s body, eventually reaching her mind, forcing her to act in a bizarre and decidedly undignified manner. There was no similar pathology in men.

Diagnoses of somatoform disorders are rare, but it is often suspected by doctors, especially by doctors who are not psychiatrists. It is a product of medical education. We want to be able to fix people. We believe that our education has equipped us with the tools to do that. When a patient presents in ways that we cannot figure out, or does not responds to treatments that we KNOW should work, it is pretty easy to blame the patient. In her article: “Sex, Lies, and Stereotypes: Women and Interstitial Cystitis,” in the Journal of Sexual Health, Denise C. Webster of the University of Colorado does an excellent job of pointing out the cultural differences between the patients that describe their symptoms, and the physicians that interpret them.

Here are some of the reasons that it is difficult to get physicians to take the very real pain that you are feeling seriously. Somatization disorders are characterized by eleven symptoms. More than two of these (with absence of obvious pathology) will send a red flag in some physicians that there might be a mental component to the problem: nausea, vomiting, fainting, headache, forgetfulness, dysmenorrheal (painful periods); abdominal pain; diarrhea/constipation; dyspareunia (painful intercourse); loss of sexual desire; fatigue. This is a big list, but it is a seriously inter related list. If you have interstitial cystitis (IC), chances are you have or have had some sort of pelvic floor dysfunction as part of your symptoms. A high percentage of IC patients also have migraine headaches, irritable bowel syndrome, and/or vulvodynia. If you have one or more of these conditions, and you start to tell your doctor your symptoms (and remember, he asked!) by the time you are half way into your list, you have probably ticked off three or four or more of the “red-flags” of somatoform disorder, and he has already quit listening to your symptoms, and is trying to figure out your dosage of anti-depressant or anti-anxiety drugs.

The good news is that many doctors are becoming more educated about chronic pain, and about chronic pelvic pain. But what do you do when your doctor is not listening, and you feel like no one believes that your pain is real?

If you feel like your physician is, in general, a good doctor and someone you want on your team, try to educate her. Schedule a time to see her when things are least busy, let the office know that you want a conference or consult, not just an appointment. Come prepared, and try to move the conversation quickly, look at this as a problem solving or brainstorming session, not a chance to vent or criticize previous encounters. Let her know up front that you admire her as a doctor, and appreciate her help; but, be very firm that you feel that she has not done enough in trying to diagnose the cause, or find a treatment that will help. Ask her what your options are, and if she feels she has tried all options, ask for a referral to someone else. If you have done your research, and know of other options that you think may help, bring them up. Your doctor will either explain why she has not used that with you (be sure it is an explanation that you understand), or will admit lack of information, and agree to research it for you. If your doctor dismisses your ideas out of hand, without explanation, it may be time to doctor shop.

Be clear that you know your body. Your pain is real, but not insurmountable. You need a team that will help you live well, choose them carefully.

Bladder Boot Camp

“There are no shortcuts to any place worth going.”

- Beverly Sills

Your bladder is a muscular sack with two tasks – to hold, and eliminate, urine. In a normally functioning bladder, that process works like this: Urine descends into the bladder from the kidney via the ureters. The sphincter muscle at the bottom of the bladder keeps the urine from escaping. When the bladder is full, the muscular lining is stretched, giving the bladder the urge to contract. If your bladder functions normally, you can ignore the urge until it is more convenient, or at least until you get to the bathroom. If you wait too long, the urge will become unbearable and you will have to void.

What is too long? Nurses are notorious for making it through an 8 or 10 hour day before relieving themselves. Months or years of this behavior is bound to cause problems. People with overactive bladder symptom (OBS), or interstitial cystitis (IC) can sometimes last only minutes before the urge becomes too strong (sometimes painful) and they must void. If a person tries to hold urine “too long” they will either lose control (become incontinent), or they will experience pain and spasm, and possibly begin to retain urine. Neither one of these scenarios is desirable.

A normal bladder habit is one in which the person voids 4-6x/day and 0-2x/night. This means in a 24 hour day, if you are awake for 16 hours, you should be going to the bathroom every 3 ½ to 4 hours. If you are one of those 8 to 10 hour people – do yourself a favor and take a lunch break - go to the bathroom, your bladder will thank you. For those of you that are going to the bathroom more often, things are a little more difficult.

There are many reasons that a person may have a small bladder capacity. The muscle may be tight (like a shortened hamstring that needs to be stretched) or prone to spasm. The smaller capacity may be habitual. For instance, if you are pregnant, you get very used to making bathroom runs “just in case” every where you are, by the end of the last trimester, chances are you don’t go past a bathroom without stopping in. After the baby is born, going to the bathroom very often has become a habit, and eventually your bladder thinks that it is normal to go every hour or half hour.

If the problem is not painful, and the bladder does not seem to spasm (which is typically painful), then bladder training may be very beneficial for you. There are several different ways to re-train your bladder. I like to start with the bladder diary, and assess the voiding patterns.

Sometimes the diary will show that someone is only having problems when they consume things that irritate the bladder. I have had people completely “cured” simply by eliminating certain things from their diet. Things to look out for:

· Anything with caffeine – coffee, tea, chocolate

· Alcohol, particularly red-wines

· Citrus – juice or fruit

· Tomatoes (even spaghetti or pizza sauce)

· Anything carbonated

· Hot, spicy things

· Vinegar

Ok – that’s the short list, but most of the “biggies” are on it. Look carefully and be sure that you understand the relationship between what goes in and how quickly things come out. As a side note, water will help to keep your urine dilute, so the urine is not as concentrated, and not as likely to irritate the bladder, so drinking water (a few sips every 10 minutes or so) is highly recommended.

Before I go into the actual training part, remember that if having a full bladder is painful, then bladder training is probably not appropriate for you. Interstitial Cystitis patients particularly, if the lining of your bladder is compromised (Hunner’s ulcers), please question anyone that asks you to start a retraining program to explain their rationale. Be very clear that they understand what the lining of your bladder looks like, and what they hope to accomplish by stretching it.

When I feel it is safe to start someone on a training program, I look at the bladder diary. If you are going on the average 20x/day, that is voiding approximately every ½hour to 45 minutes. I try to take the conservative view, and assume that you can probably make it on a 30-minute schedule. You start with the first void of the morning, then every 30 minutes you stop what you are doing, and go take a comfortable trip to the bathroom. If you have to go at 20 minutes, take a big breathe, find a diversion, and try to ignore it for the next 10. Sometimes if you contract and relax the pelvic floor muscles two or three times (quick flick Kegels), it will help to control the urge. If you do not void at 30 minute, wait until the next scheduled void before you try again. If you absolutely cannot wait until the scheduled void, note the time that you went, and time subsequent voids based on the new time.

This first phase gets you in control of your bladder. You may actually be going more frequently than you would normally, but it is controlled by your brain, not your bladder. If this schedule is managed within a few days, we change the void schedule to 45 minutes. Again, beginning with the first void in the morning, and attempting to void every 45 minutes. After this we add 15 minutes about once a week. Sometimes we have to play with it a little, sometimes 15 minutes is too much to add; sometimes it takes longer than a week to master the new schedule.

Patients with pelvic floor dysfunction have to be extremely cautious when starting a training schedule. The “quick flick” method of controlling urge can have devastating effects on your ability to relax those muscles. “Holding” for too long can cause spasm in the pelvic floor, increased pain, and potential problems with retention. Although many medical practitioners are perfectly capable of establishing and following a bladder training program; for patients with pelvic floor problems I think that it is vital that you are being followed by a trained physical therapist with experience in treating the pelvic floor.

It is very important to pay attention to when it is difficult, and what is going on in your head when you have more frequency. Do you have a work bladder and a home bladder? Which one is easier to play with? Do you need to bring your home bladder to work with you? Stress can play a huge role in bladder activity, and you need to be able to find that place in you where you feel most relaxed, even if the environment is difficult.

Good luck, and safe training!

Lymphedema

In honor of National Breast Cancer Awareness month, I have asked a friend and colleague to write a post about Lymphedema and the importance of Lymphatic Drainage. Kathleen Boyle, PT, LMT, has recently joined me at Slainte Physical Therapy. She is providing an unique blend of Yoga, Physical Therapy, and manual techniques to our clients. We are delighted to have her with us.
Thanks, Kat!

Lymphedema is a swelling in the tissue due to a build up of proteins in the tissue. The lymph system is designed to move bacteria, proteins, and other large molecules from the tissues to the lymph glands where they can be broken down. When a person has a deficit in the lymph system due to scar tissue from injury, surgery, or radiation, or due to removal of lymph nodes or a congenital lack of lymphatic vessels, then these proteins can build up in the tissue and attract water. This can result in increasing swelling over time. This can occur in any part of the body.

One group at high risk for this disorder is women who have undergone surgery and/or radiation for breast cancer. Frequently the treatment can involve removal or radiation of lymph tissue. Many people do not know that after such surgery there are things that can be done to help prevent the onset of lymphedema.

For instance, the pressure changes involved in flying on an airplane can initiate this disorder. A woman who has had breast cancer surgery with removal of lymph nodes or radiation should obtain a compression sleeve to wear any time she is flying. A doctor's prescription is required to obtain the garment. Also, the arm at risk for lymphedema should not be lifting heavy things, like a big suitcase, heavy weights at the gym, or even a heavy purse. Better to carry the purse on the other arm. Care needs to be taken with the hand and arm to avoid sunburn, cuts, and even mosquito bites. Wear gloves to garden and sunscreen outside.

If there has been any damage to lymph nodes or the lymph system of a breast then the arm on that side is at risk. The goal is to avoid any added stress on the lymphatic system for that limb to help avoid development of the disorder. However, if ANY swelling is noted in the arm seek treatment as soon as possible to increase the effectiveness of the treatment. Even if swelling has been present for months or even years, treatment by a trained physical therapist is still very helpful and can greatly improve quality of life.

Treatment has been available in Europe for many years, and over the last few years many more physical therapists in this country have been trained to properly treat this condition. Check to see if your regular therapist has been certified by a reputable organization to treat lymphedema, and if not, seek out a trained therapist. Treatment can include a specialized form of massage to stimulate the function of the lymph system, maximize the function of alternative lymph pathways to drain the area of proteins and fluid. The massage should be accompanied by a wrapping with specific short stretch bandages to provide compression overnight to continue to drain the fluid. These must be applied by a trained physical or occupational therapist to avoid over compression and inflammation. There are specific exercises that can be done with the bandages on. After two to three weeks of treatment many patients will have a reduction in limb size to very close to the size of the unaffected limb. Most of the time a professionally fitted compression garment must be worn daily to maintain the limb in the reduced size, although with very early treatment sometimes a garment will not be needed.

Many patients who develop this condition do not know what it is and many health care practitioners of all types are likewise uninformed. If you have been told in the past that "there is no treatment", or that "you must just live with it", this is incorrect. Please seek out a trained physical therapist. If you have been given a pump to reduce the limb size on a daily basis, please be aware that a compression pump can further damage the lymphatic system if the pressure is too high in any one area and leave you wedded to the pump for life. Seek out a trained physical therapist to assist you.

Haven't Got a Chew

Temporomandibular Joint Dysfunction (TMJ, or, more accurately, TMD) is a syndrome that affects approximately 10,000,000 people in the United States. TMD is a poorly understood collection of symptoms that seem to originate from the temporomandibular (jaw) joint. For years it was bounced around like a hot potato between the dental and medical communities; in some ways, this still happens.

The presentation of symptoms does not necessarily include pain in the jaw, or even the classics: “popping” or “clicking” in the joint. This means that people who suffer from TMJ pain often are undiagnosed, or misdiagnosed. The most common symptom that is not directly related to joint dysfunction, is headache. TMD headaches can be ones sided (mimicking migraines); or two sided (complex migraines, tension headaches, or: we don’t know what is going on, and we need to run many inconclusive and scary tests to rule out the really bad stuff). These headaches are tension headaches, caused from clenching or grinding the teeth, building tension in the temporalis muscles (they are fan shaped muscles on your head; around, above and behind your ears). Tension headaches beginning at the base of your skull can contribute to TMD, and TMD can make these types of headaches worse. If you are prone to migraines, a TMD related tension headache can trigger a migraine. So if your major symptom is headache – you might want to discuss TMJ syndrome with your doctor or dentist. In an article from the Boston Globe: “If Doctors Can’t Help Your Headaches – Should You See a Dentist?” you will read about the benefits of seeking a dentist for help with chronic headaches.

How does Physical Therapy help? Well, in my practice, number one is: POSTURE. If we can’t fix your posture, everything else is palliative. There are many things we do to loosen the muscles, including electrical stimulation, ultrasound, heat, ice, and massage (massage is great, and proven effective for pain relief in TMJ). I have an earlier post on trigger points, which discusses how trigger points work, and mentions the benefits in the treatment of TMD. Trigger Trauma. Still; posture is key. By improving your posture, you take the stress off of the joints; not just off your jaw, it also relieves the stress on your neck and shoulders. Posture training and appropriate exercise also gives you more control of your health.

I was diagnosed with TMD 17 years ago. I am relatively symptom free unless I do something that I know is going to cause me pain, or throw me out of good posture – like wearing high heels. I do it very rarely, for very brief periods of time, and I know that I will pay, but it is a decision that I get to make. I also am in control of my diet. I have not chewed gum in 12 years – the pain that I will deal with for days after is not worth it to me. Carmel, on the other hand, is occasionally worth three days of ice-packs and begging my staff to treat me.

Stress (I mentioned that these are tension headaches, right?) is some what under our control. If you have a lot of stress and tension in your life, you have to get a handle on it. Learn to meditate, and make it a priority. If you are unable control your reactions to the stressors in your life (and yes, keeping your mouth closed, and pretending that things don’t bother you is a reaction,– clenching, remember?), please seek counseling. This is hugely important. Life happens, how you deal with it will determine how negatively it affects you. There is some basic information, and tips on how to deal with TMJ pain at my web-site: Slainte Physical Therapy .

There are factors that affect the joint that we don’t have a lot of control over. Changes in atmospheric pressure can worsen symptoms, especially if your temporamandibular joint has become arthritic. I live in Florida, hurricane season is hard on my jaw patients, and on me. Between the stress involved with the season, and the rapid weather changes, my office gets very busy. At that point it is just symptom relief, and trying to maintain as much of a positive attitude as possible. At least weather is not permanent.

EndoKnowledge

I would like to acknowledge Niva Herzig, MSPT of Marathon Physical Therapy in Boston, and Amy Stein of Beyond Basics Physical Therapy in New York, for their recent article in “Visions,” the professional newsletter of The International Pelvic Pain Society. The article is titled “Physical Therapy and the Treatment of Endometriosis.” Full text of the article can be viewed at www.pelvicpain.org. Click on “provider resources” and choose “read the pelvic pain newsletter” from the pull down menu.

The authors explain in detail how physical therapy can benefit women suffering with the pain of endometriosis. The relationship between pelvic floor muscles, abdominal muscles, pelvic organs and connective tissue can create patterns of pain that can be relieved by manual physical therapy, proper stretching and exercise, and using relaxation techniques. Often, the surgical procedures used to eliminate the endometrial lesions result in scarring. Scar tissue can cause pain, trigger points, and poor movement patterns. Physical therapy can help with all of this.

Endometriosis is primarily a medical condition, characterized by the appearance of endometrial tissue (the tissue that lines the inside of your uterus) around (or in) the tissue of other abdominal organs. This tissue is hormone sensitive, and reacts to the ebb and flow of estrogen that happens during a normal menstrual cycle. This is why endometriosis pain is most common just before or during your period. Some women have endometriosis pain at other times in their cycle, and some are most sensitive when they use or stretch the effected tissues. Endometriosis can occur in women at any age, and is a common cause of extremely painful periods in teen-agers and young women.

I recommend that any woman with painful periods discuss them with her gynecologist. I also feel it is important to track your pain patterns for a while; it helps in the discussion with your doctor, and will help you see patterns that might not have been obvious before. Many pain diaries can be found on the internet. One I found is a Weekly Pain Diary. It is helpful if you think that your pain may be associated with your menstrual cycle. The one shown here has a place at the bottom for comments or "other" – use this area to note what day you started menstruating, and how heavy the flow is during the week.

If you are diagnosed with endometriosis, discuss the benefits of physical therapy with your doctor, but remember that PT is most beneficial as part of a multidisciplinary team. Unless the proliferation of tissue and reactivity to hormones is addressed, you will probably continue to have pain, regardless of the skill of your physical therapist. Let me know how you are doing, and if you have had success with PT, or have information that would benefit others, please post a comment.

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.

nICE & HOT

Heat or Ice?
It’s a question I get a lot, and the answer is always the same: “That depends.”

They are both simple thermal modalities that have surprisingly profound effects on your body’s tissue. Both will (sometimes) reduce spasm. Both will (sometimes) quiet hyperactive nerves. Both will (sometimes) relieve pain. Heat may make an inflammatory response worse. Ice will not. Heat will never give you frostbite. Therapeutically applied ice won’t, either; but I’m trying to be fair.

Heat increases blood flow to the area. This opens the capillaries (the smallest part of your blood vessels, where oxygen is actually delivered to the cell). This increased blood flow and opening of the capillaries is what gives your skin that pinkish color under the heat pack. As the tissue warms up, you start to sweat, so your skin is doing its job of keeping you cool. There is a reflex message to the underlying tissues to relax, and let go. Sometimes your body is not happy about the surge of blood flow, and you get a rebound of increased inflammation and pain after the soothing effects wear off. If you are one of those people that says: “heat feels good, but about an hour later, I am in worse pain,” then heat may not be your best option.

Ice increases blood flow, also; but not right away. First the capillaries contract (get smaller) and restrict the blood flow to the tissue. As your tissue become accustomed to the cold, the vessels slowly expand, allowing more blood into the area, trying to warm things back up. This is why if you take the ice pack off in the first few minutes, the skin is white (constricting), and if you wait ten minutes or so, the skin is red (expanding). In the meantime, the reflexes are telling the nerves to calm down, and the muscles are not getting all of that aggravating input from the hyperactive nerves, so they are starting to loosen up. The bad news is that some people are very sensitive to ice. If you are someone that has a really strong, painful reaction to ice; try heat.

Ice is not so bad, in fact I always tell my patients to try it, and it may become your new best friend. (I’m not supposed to have favorites, but I love Ice). It’s a tricky friend, and there are some things to be aware of:
The sensations from ice application come in stages, and if you are aware of them, it won’t be so scary:

1. Cold – duh! It’s an ice pack


2. Burning – some people miss this stage, but for others it can literally feel like you lit a fire under the pack


3. Achy – really achy. There are lucky people that miss this stage. I always feel like I have a giant toothache wherever the ice is. Having someone around to listen to you whine during this phase is always helpful.


4. Numb – Yay! Success! This is the point right?

Now – the whole process should take about 10-15 minutes. If after 20 minutes you have worsening burning or aching – give it up, it might not be the best thing for you.

If the tissues are really constricted, and the object is to increase blood flow, I like to use contrasting heat/cold. Heat for 3-5 minutes. Ice for 3-5 minutes. Repeat for 3-5 cycles. End with ice, to avoid increasing inflammation.

Safety considerations for heat and ice:

• Never fall asleep on a heat pack. I have seen some nasty burns.


• Moist heat is more effective than dry, but can feel comfortable even when it is too hot. If it is AT ALL uncomfortable, get extra padding, or turn it down if you are using an electric pack. (same with dry heat)


• Ice packs are not designed to be constant wear. Take it off after 20 minutes. Put it on every hour if you feel like it, but give your tissue a break in between.


• When heating things in a microwave – remember they are still cooking when you take them out. Test the heat with the back of your hand before applying the pack, and remember that “a little too hot” is still too hot.

What to do with all of this information?
Experiment.

Muscle spasms and cramping tend to respond really well to heat, but I have a lot of patients that prefer ice. Inflammation (swelling, redness, painful to touch) tends to respond well to cold. If you can’t tolerate cold, try cool – it is not quite as effective, but you won’t go through the burning, achy, painful thing either.

There is a wide variety of shapes and sizes of heat and cold packs out there. Shop and compare prices, you can search the internet, or check out your local medical supply or pharmacy. I always go to IC Relief, just because I know the owner, and she is really knowledgeable about Interstitial Cystitis, Pelvic Floor Dysfunction, and Vulvodynia. I especially like the contour style pack (also called “cervical pack” on some sites) because you can use it bikini style across the lower abdomen and bladder, or lay it long ways from the sacrum to the pubic bone, cooling (or heating) the external genitals. For many of my patients, I will put them on a large pack on the low back, a contour over the bladder, and another one between the legs against the pelvic floor.

Internal heat and cold:
This is important for pelvic floor patients. Many of my patients have a much more successful session if they are able to use some sort of internal cooling device after a session. Again – I love the EZ-Fit from the IC Relief people. Read the safety considerations carefully, with this or any product you use internally. Remember that the rectum and vagina are lined with mucous membranes; there are more blood vessels, and less protection than in other areas of the body. Use cool and warm, rather than hot or cold. Moderately warm to your hand will be too hot internally. If you use ice internally, it needs to be something small enough that it melts or warms up fairly quickly (5 minutes of cold, up to 10 minutes of cool). Contrast hot/cold is great for the pelvic floor.

I have patients that use a frozen tampon – be careful if you are sensitive to bleach or the chemicals sometimes used in them.
I tried the frozen condom – too cold, too hard, too big.
The finger of a rubber glove (kitchen variety) filled with water and frozen may work.
Please let me know if you have other ideas, and post them as comments. I know everyone would like to read your ideas!

PNE Paradox

Pudendal Nerve Entrapment (PNE) is diagnosed primarily on the patient’s symptoms.

· Persistent pain in the specific nerve distribution: genital area; around the anus tail-bone sometimes into the gluteal (buttock) muscles

· Pain may be described as: dull, burning, tearing, sharp, aching, or “pressure”

· Pain is much worse with sitting, can be all or partially relieved with standing, significantly relieved with sitting on a toilet seat, or any seat with a cutout that takes pressure off the pudendal nerve.

Patients with these symptoms are often misdiagnosed with chronic prostatits (in the male) and vulvodynia or vestibulitis (in women). In both sexes these symptoms may get you a diagnosis of Interstitial Cystitis (IC) or Chronic Pelvic Pain Syndrome (CPPS). There is a really great article in Urology Times by Penny Allen that discusses these differential diagnoses. The problem with diagnosing all of these conditions is that one does not necessarily rule out the other. You may have PNE, and also have IC. Once you are positively diagnosed with one, your healthcare professionals may stop looking for other conditions that contribute to your pain. Getting the diagnosed condition under control before looking for other factors may be the best course of action; but, if you are showing significant improvement with some symptoms, and other symptoms are no better (or worse), it is time to start digging deeper.

Your pudendal nerve exits your sacrum and travels between two ligaments and your piriformis muscle through a half circle opening (called Adcock’s canal) in your pelvis down to the area it innervates around your genitals. Realize this explanation is very simplified, and I have not figured out how to put graphics onto this blog. There are great images all over the net – follow this link to an article with a nice little schematic and a great picture of the nerve as it travels through the pelvis. (PNE pics) The primary site of entrapment is in Adcock’s canal, and many treatments are focused on this area. Nerve injections are done here; surgical releases are performed at Adcock’s canal, particularly if calcium deposits are found.

Sometimes injections and surgical treatments do not work. This is because there are other ways that the nerve can become irritated, and other ways that pain may show up in your genital and anal area. Trigger points are something I post about a lot. Many trigger points (TP’s), will refer to the external genitals. Common TP’s that I look for are in the adductor (inner thigh) muscles, obdurator internus (which can be accessed externally, or through the vagina), and muscles of the pelvic floor, which are accessed through the rectum or vagina. Often stretching the piriformis muscle and the ligaments involved in PNE will take some of the pressure off the nerve. There is some evidence that hyper-irritation of abdominal organs can cause the PNE to become over active, irritated and painful.

Many physicians that are well versed in treating PNE have begun trying conservative, non-invasive treatments before surgical interventions or injection therapy. Sometimes, if the symptoms are very severe, injections are still the best first-line treatment. If you have these symptoms and your doctor recommends surgery right away, or after only trying injection therapy, ask about physical therapy and other non-invasive treatments first. And Always, Always, get a second opinion before undergoing a surgical procedure, even if your doctor is the best doctor in the field.

Weiss J; Prendergast S; Pitfalls in the Effective Diagnosis and Treatment of Pudendal Nerve Entrapment. The International Pelvic Pain Society. Vision.

Antolak S; Pudendal Neuralgia. Internatioan Pelvic Pain Society. Symposium. Banff, AB, CA. 2003

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.

Dear Diary -

When someone calls my office to set up an appointment for any condition remotely related to pelvic floor problems, I ask them to track behavior in a bladder diary for at least 3 days before the initial consult. I require this of patients with incontinence, pelvic pain, interstitial cystitis, vulvodynia, and urinary frequency. Often the response I get is, “Oh – I don’t need to do that, I don’t leak, and I know how often I go to the bathroom.” This is really good information – but; a bladder diary can tell me so much more.

Different diaries allow for recording of different data. My favorite is from the NIDDK (The National Institute of Diabetes and Digestive and Kidney Diseases). Click here to download a copy in pdf format: Bladder Diary. This diary breaks the day up hourly, with separate sheets for night and day. Each hour you are asked to record what you drank, and how much; how often you urinated, and how much; if you had an accidental leak; if you had a strong urge to urinate; and what activity you were involved in at the time. I know – you think you are going to spend your life filling out a ridiculous form, you already know you go too little, too often, and you don’t drink enough water. But now we have a pattern, and this information will tell me a lot about when you have the most frequency, and maybe some information about why.

For instance: some nights you only have to get up once or twice to urinate, some nights it’s five. Most people are aware that they occasionally have more nocturia (night-time urination), but with a bladder diary we may find out that it happens on nights that they have a glass of wine or soda with dinner. Sometimes the patterns aren’t as easy to see: once a bladder diary showed me that a patient went to the bathroom as often as 4 times in one hour on Monday afternoons – the day her mother-in-law came to visit the grand children. Do you think stress may have been a factor?

Usually the diary is a tool I use to further explore problem areas with the patient. Sometime, just the act of writing things down lets the patient see patterns that they were missing. I had someone schedule for an evaluation because she had severe urge incontinence. While doing her homework before the appointment, she realized that she lost control as she got to her front door after work everyday. She also realized that she worked an 8 hour day without urinating – not even once. She disciplined herself to take potty breaks during the day, and called me to cancel her appointments – complete resolution of the problem.

Even if your healthcare provider has not asked for a bladder diary, it might be a good idea to start one. I only ask for 3 days because I can usually expect some level of compliance in that amount of time; a week would be better, a month would be optimal. Some additional things that you may want to track, especially if this is a problem you have had for a long time, or if you are seeing a new doctor, or just looking for more comprehensive information to give your health care team:

• Bowell patterns. Are you frequently constipated? If so, when? And does it affect your urinary frequency, urgency, or incontinence?


• Menstrual patterns. Do you have more symptoms before, during, or after your period?


• Diet. Some foods irritate the bladder, and most diaries only consider fluids.


• Stress patterns. What is going on in your environment, and in your head? Does any of this have a bearing on your symptoms?

Don’t just write down the bad things; track the simple pleasures in your life. You may find that when you have a really good day – your bladder has a good day, too!

Let's go! Really go!

"The time to relax is when you don't have time for it."
- Sydney J. Harris (1917-1986)

When you have pelvic floor dysfunction, one of the worst things you can do is strain while sitting on the toilet. Normal bladder function includes relaxing the pelvic floor, which sends a message to the bladder muscle (detrussor) to squeeze. When you strain during urination, to force things past the tight, spasming pelvic floor, it confuses the system. Straining during a bowel movement also worsens pelvic floor problems.

I know - you have a life, and sitting on the toilet for 10 minutes every 1/2 hour, hoping to pee, can put a huge rift in that life. As physical therapists, we work on relaxing the pelvic floor muscles (PFM) by down-training with surface emg (biofeedback), I touched on this a little more in the "To Kegel or NOT to Kegel" post. We use manual techniques (see "Trigger Trauma"); we teach you exercises to relax the muscles surrounding the pelvis and pelvic floor; most therapists will either teach some sort of meditation, visualization or "physiological quieting" techniques, or refer you to someone that can.

So here you are, about to learn all of these really great techniques that you know will help you, and you still have to go to the bathroom. NOW! not later, after you have hypnotized your PFM into submission. Now! while your baby is screaming and the phone is ringing and you still haven't loaded the dishwasher or folded the laundry, and what is that weird noise coming out of the cat?

There are a few things you can do while you are sitting there:

• 1st - Breathe! Just take a couple of deep breathes when you first sit down. If you know any of those visualization techniques from your therapist or somewhere else, this is the time to use them.
• Get a stool. A little foot stool to keep in the bathroom to put your feet on while sitting on the toilet. This brings your knees up, similar to a squatting position, relaxing the PFM. This works great - helps with constipation, too.
  
• Passive voiding. This actually works better for people that have trouble emptying, but it can work if the problem is initiating a void: place your fingers just above your pubic bone while sitting up right on the toilet. Press in with your fingers, and lean your body forward over your knees.
• Eat right, with lots of fiber. Avoiding constipation will help to keep the pelvic floor in good shape, and help you avoid the habit of straining.

If any of you have any other tips and ideas - please share. I love comments!

That's so......... Stimulating!

Electrical stimulation in all of its many forms is widely used in physical therapy today. Every therapist has their favorites: favorite machine; favorite treatment parameters; and favorite conditions to treat with it. For this reason, I am not even going to pretend that this post will be a comprehensive guide for you. I will discuss a few standard uses of electrical stimulation with pelvic floor and/or bladder control problems, but be aware that your therapist may be using something completely new and/or cutting edge.

First, let's talk about delivery systems. The Medtronic Interstim device is implanted into your body (by a surgeon, under anesthesia) with a wire that connects directly to your sacral nerve. I’m not going to go into any more detail – that’s a whole different blog subject. There are internal probes that can be used rectally or vaginally. There are superficial pads; these used to be carbon, with sticky gel that we taped or strapped on to people, these days I think most places use self-adhering pads that are patient specific. (That means multiple uses, but only one set per patient). There are point probes, hand held by the therapist while specific spots are stimulated for a short amount of time.

I rarely use the internal probes for electrical stimulation, because for many of my patients, they are cost prohibitive. When I leave it up to my patients, they are often very happy with the disposable pad electrodes, for pain control and calming the detrussor (bladder muscle). If I was treating more incontinence, where strength is an issue, I would use internal probes more often for stimulating the pelvic floor muscles, as it is often difficult for the patient to build the force needed for strengthening. There are some very good home devices out there that use vaginal or rectal probes; all of them require a physician’s prescription.

Reasons to use electrical stimulation:

• Strengthening – really important with weakness of the pelvic floor resulting in incontinence. This is done internally with a probe; the stimulation is turned up until you feel the muscles contract. The therapist will set the times for contraction (on) and relaxation (off).


• Calming the bladder – This works really well for controlling urge incontinence, frequency and urge/frequency disorders. It can be done with pads (placed above the pubis and at the sacrum); internal probes; or Interstim. I am not sure if you actually feel the Interstim – I never thought to ask one of my patients. (Let me know if you are using it, or have used it). With probes and pads, you will feel the electricity like a rhythmic tapping, which will last for the duration of the treatment.

Pain control – This is where we, as therapists, get really creative.

• For vulvodynia, pudendal neuralgia, or vestibulitis I often do something called Interferential electrical stimulation. This requires four pads, out of two channels, the current from each channel interferes with the other. So – If I set the pads up so Channel “A” goes from just above the pubic bone on the Right, to the Left adductor (inner thigh) muscle, and channel “B” does the opposite, then the majority of the electricity is centered on the vestibule. You will typically feel the electricity at the pads, but the treatment is more central. We can do this treatment with different pad placements, but the currents must cross to work properly.


• Constant, pulsed, burst, or modulated waveform settings using TENS (transcutaneous electrical stimulation – often sent home with the patient, looks like a beeper with wires). Each of these waveforms feels a little different, your therapist (hopefully with your input) will make the best decision for you.


• Constant setting with an internal probe.


• Micro-stimulation – I use hand held probes, there are also pad placements for this type of electricity. This is very low-level stim, often sub-threshold, or so minimal you barely feel it. I use it with a combination of acupuncture points, and common trigger point patterns that affect the pelvic floor and bladder.

There are some pain control protocols out there that include stimulating the pelvic floor muscle to fatigue, creating a forced relaxation, that will hopefully carry-over to everyday life. I have never used this method. It hasn’t worked for me with neck, back or shoulder muscles, I have not been willing to try it with the pelvic floor.

I could probably do a 3 hour course on electrical stimulation for pelvic pain syndromes, without even getting into the principals of electricity. This is a very small overview of what is out there. If your doctor or therapist is using something that you don’t understand, ASK! There should be some sort of rationale behind whatever it is.

"To Kegel, or NOT to Kegel..."

That is the question.

In 1948 Dr. Andrew Kegel noted that the “passage of the fetal head through the vagina during delivery is inevitably attended by muscle injury.” In other words, delivering babies is hard on the pelvic floor muscles. At the time, Dr. Kegel was convinced that having babies caused the lack of muscle tone that led to incontinence. Then he realized that women often became incontinent, even if they never had babies. So what’s going on here?

Well, the theory I like best has to do with cultural norms. We, like most western, industrial nations, use toilets; and sit in chairs when eating; and sit in chairs while working; and socializing. We are a sitting culture. Squatting cultures have very little problems with female incontinence. In pre-WWII Japan, the condition was very rare. Now, as our toileting and sitting habits have been widely adopted by Japanese society, the rate of incontinence there is equal to our own. Interesting, huh? The pelvic floor muscles activate in rising from a full squat, so they are naturally exercised in these cultures just by normal activities of daily living. Since I don’t think our end of the world is going to give up toilets – face it, I’m not even going to give up mine – then we have to come up with another way to keep these muscles strong and healthy.

Dr. Kegel studied the muscle integrity of thousands of women. He developed a system of strengthening these muscles that was three-fold:

• Isolate. Find the muscle, contract it- and try not to let the rest of the body kick in. He had women isolate the muscle by inserting a finger into the vagina, and squeezing around it.


• Resistance. He felt having something to contract against was important. A finger, a penis, a perinometer.


• Feedback. This is where the perinometer comes in. He developed this device so that the women could see how much she was contracting. A pneumatic device (kind of like a partially filled balloon) was inserted into the vagina. As the women contracted the muscles, the pressure in the balloon would make the gauge on the end move. It was the same sort of dial they use on the end of a blood pressure cuff. The woman got instant feedback as to the strength of her contractions.

This probably does not sound a thing like the instructions you were given in your doctor’s office, or the last women’s magazine you read. Mainstream civilization kept the concepts of Dr. Kegel alive, but we lost a lot in translation over the years.

There are many products on the market that provide resistance and feed back: The PMTx, which is very similar to Dr. Kegel's device; MySelf is more high tech, and has an easy to read screen, but; I’m cautious about giving this to my patients with pelvic floor dysfunction, because you lose the visual feedback during the relaxation phase, and the contract/relax timing is cued by the device, so if I want you to relax for longer than you contract, you have to really think about it.

There are lots of products out there that give resistance, without feedback. Vaginal cone weights are common (the link is just one of many examples). I never give these unless the patient is critically weak, and I have evaluated her on EMG (electromyogram) and I am positive that there are no coordination or spasm issues with the pelvic floor. There are also some pretty scary devices out there; some of them show up on the Google ads on this blog. Did I mention that I don’t screen or condone the banner ads that show up here?

So – what about pelvic floor patients? Should they do Kegels (the modified, common ones that every body teaches now), or not? The answer is: maybe.

Before I give strengthening exercise of any kind, I make sure that the person has good control of the muscle. You should be able to isolate the muscle, contract it, and most importantly, relax it. This is true of just about any muscle in the body, not just the pelvic floor muscles (PFM). I use a lot of EMG (biofeedback) training with my patients. It is a very good visual and audio system for learning the difference between a relaxed PFM and a tight one. If the person does not have good control while hooked up to the machine, I will not recommend a series of activities that involve regular contraction of the PFM for a home program. When I am absolutely positive that my patient can tell when her PFM is tight, and can consciously get it to relax and stay relaxed, then we are ready for some strengthening activity. Even at this point I am very cautious. Most of my patients are given programs that include relaxation times that are twice as long as the contraction phase. Even when they don’t present with a pelvic floor dysfunction, I want to make sure they are relaxing appropriately.

The average woman in our society needs to be doing strengthening activities with her pelvic floor muscles. The populations I treat are the exceptions to the rule: people with tight, spasmodic, or uncoordinated muscles; because of this I tend to error on the side of caution. As with any exercise program, before jumping into it, if you feel that you have any problems or medical issues that could be affected by your activities, consult your physician or physical therapist.

Pelvic Floor Therapy

I was checking out the ICN (Interstitial Cystitis Network) message board, and was surprised at the different experiences people have with pelvic floor therapy. The same day a friend e-mailed me a question from the message board and asked me to address it in this blog.

This is the question:
“How often do you guys have PFT appointments? Mine are only once every other week. They just use the probe and it only takes about 20 minutes. I do not feel like it is doing anything at all. Any advice? Also, they tell me to do kegels in the meantime, and I was under the impression that those are bad for IC? Just checking.”

I can only answer from my perspective. I know nothing about this patient, and have not evaluated her, so my answer may not even apply to her situation. During the initial evaluation there is a lot of history taking and discussion. I review their bladder diary, which tells me patterns of frequency; consumption of bladder irritants; incidences of incontinence (rare with IC, but it happens). We discuss life habits, previous and current treatment attempts, and general health history.

Then we assess posture and general musculoskeletal structure – is the pelvis and low back in alignment and working together? Are the muscles of the thigh and hip particularly tight? Weak? Balanced? We then assess the pelvic floor muscles (PFM), visually at first: I have the patient try to contract the PFM, I observe the pelvic floor during coughing or laughing, I look for irritation, discoloration or scarring. I then palpate (gently) the external region for tenderness. Internal exam consists of looking for trigger points in the muscles of the pelvic floor, assessing tone of the muscles and having the patient contract and relax the pelvic floor. This part is especially important for detecting pelvic floor dysfunction. Most IC patients can contract, the question is: do you relax appropriately, quickly and completely? If a patient cannot tolerate intervaginal palpation, I will evaluate by palpating rectally. Often on a first visit, I will not have time to do a complete evaluation, and will leave internal palpation for the next appointment.

The next part has to do with surface EMG (electro-myogram) we call this biofeedback, but it is really just assessment of neurological output of the muscle. On the initial visit I do this superficially, with small round electrodes on either side of the anal sphincter. I do this because the probes are often cost prohibitive for my patients, and I don’t recommend the purchase of them unless I feel it is medically necessary.

All of this information makes up my side of the conversation when determining schedule with a patient. Then comes the patient side of the process. How much is cost a factor? How much will insurance pay? How far do you have to drive? Will travel be detrimental to the process? A 30 minute drive for someone that has to go to the bathroom every 10 minutes will probably make physical therapy (PT) much less effective. How motivated are you toward self-treatment? How ill are you? If you literally cannot get up for more than a few minutes a day, weekly or bi-weekly PT appointments are probably not a good idea.

When all of these factors come together, we determine a schedule. Often I want to see someone more than once a week for the first 2 or 3 weeks. As I teach you more home treatments, you get to see me less. If you need lots of biofeedback training, then I suggest a home unit. It is you alone with the machine' you don’t need to be in my office with unfamiliar surroundings trying to teach yourself to relax. Plus, at home you can do 3 5-minute sessions in a day, rather than 1 20-minute session every 2 weeks. Much more effective!

Evaluation is on-going. If you have increased symptoms the day after treatment, I want to know about it. It sometimes takes a few sessions before we find out how much you can tolerate, without a rebound. We also need to figure out what works for you. I have done visceral massage to the bladder on a patient that absolutely stopped her nocturia (getting up to pee at night), and the same technique on another patient left her in horrible pain and increased frequency for 3 days. Feedback during the session is also very important. The things I do may be slightly more painful than what you are currently experiencing, but if it is so excruciating that you tighten the muscles or cannot breathe, well, expect a really bad day tomorrow. By the end of the 4th or 5th session you and your therapist should have established some pretty clear communication about what works and what doesn’t. Most patients have significant improvement after several weeks of therapy. Remember that keeping open lines of communication is very important. Give your therapist feedback, let her know what you experienced after each session (good and bad), and be sure to talk about your reactions during the session also. If there has been no change (worsening symptoms are actually better than NO change, at least we know we are affecting something), then it’s time to try something new. There are lots of options for treatment, and chances are, after 5 sessions, your therapist hasn’t tried ½ of her tricks.

Next time I'll address the infamous "Kegel."

Sex, Lies, and Dyspar....WHO?

Dysapreunia, or painful sex, affects most, if not all sufferers of chronic pelvic pain. For some, it is the only symptom; for others, it is one of many aggravating factors. Vestibulitis is characterized