Diabolical Duo

“There are two things in life for which we are never truly prepared: Twins.”

--- Josh Billings

Scenario 1: “I have always had painful periods; but my mom was very understanding, and bad periods are common in my family. My periods only really put me down for a couple of days a month; and I could deal with that. Then I started getting bladder infections, or so we thought. They didn’t respond well to antibiotics, and very soon I felt like I had constant lower abdominal pain. I was urinating 20-30 times a day, waking up several times a night, and it seemed to get much worse with my period. Finally, I was referred to an urologist that diagnosed me with interstitial cystitis. He started me on rescue instillations, elmiron, and pelvic floor therapy. I feel sooo much better. I still have flares around the time of menstruation, and my periods are still very painful, but my bladder is under control most of the time.”

Scenario 2: “I don’t remember having really bad menstrual cramps when I was younger, but by the time I was in my mid twenties, I began having a lot of lower abdominal pain, which worsened after ovulation every month. I began having overactive bladder symptoms, and occasional bladder pain, particularly if I didn’t make it to the bathroom on time. My gynecologist thought I might have endometriosis, so we did a laproscopy. There were multiple lesions, which were removed, and my symptoms all but disappeared. 2 years later, my symptoms returned, and we did the same thing, this time it didn’t seem to work as well. I got some improvement, but I am still having pain, and for some reason there are more bladder symptoms than before.”

These are pretty common scenarios, and both of these found progressive doctors that were able to hone in on the dominate symptoms and quickly find a diagnosis and get these women some relief. Sadly, in both cases the diagnostic process ended too quickly. I am constantly reminding people that quality medical care requires a team approach, and as patients we must be the captain of our team. Endometriosis and Interstitial Cystitis frequently occur at the same time in the same women. There are many articles on the web that discuss the concurrence of these two conditions; prevalence is listed as high as 80-90% in some articles. That means that the majority of my IC patients are only being treated for half the problem, and many endometriosis patients have not received the urological work-up they need. Symptoms are very similar, so treatment for one often relieves symptoms significantly enough that we feel pretty confidant that we “got it.” If symptoms persist, ask your doctor about more diagnosis.

If you are lucky and your doctor is aware of the comorbidity of these conditions, she may be using the “chicken or the egg” approach and trying to get symptoms of one condition under control before tackling the other. If this is the case, great! But, make sure that communication is open, and that your lesser symptoms are not being ignored. If you are seeing a gynecologist for endometriosis, ask for an urology consult. If you are seeing an urologist for IC, ask your gynecologist about endometriosis. You may be one of the 20% of patients that has only one of these conditions to worry about, but it would be best to know for sure.

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.

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!

"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.

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.

Exercise and IC

I was recently asked for guidelines on exercises for someone with Interstitial Cystitis. I feel it extremely important that people stay as active as possible, even when their condition limits the amount of time and energy they can commit to an exercise program. Here are key points that I go over with my patients. If you suffer from IC, and are thinking of starting an exercise program, please discuss it with your doctor or physical therapist first.

Exercise and IC

• Posture: This is absolutely key. Good posture increases blood and nutrient supply to the pelvic organs, and reduces stress on skeletal muscles, ligaments and joints. Be wary of sitting on hard surfaces (like work-out benches), many people have no problems with these, but for some, it can irritate symptoms
• Aerobic Conditioning: This is always beneficial. Especially important with IC: REMAIN HYDRATED! Toxins build up in the tissues with exercise unless you flush them out. These toxins are bladder irritants, and need to be diluted. Avoid high impact activities that will jar the bladder and encourage tightening of the pelvic floor.
  Bicycling may irritate the pelvic floor, depending on the seat.
• Core Stability: These exercises are especially beneficial, if not too strenuous, and attention is paid to the increase of inter abdominal pressure. Pilates is rarely a good idea for pelvic floor patients, unless they are in absolutely excellent condition with minimal symptoms.
  Ball activities are great. Sitting on the ball reduces tone in excessively tight PFM muscles, and increases tone in weak muscles.
• Stretching: Very important, but pay close attention to postural alignment, and be gentle.

Avoid Vigorous activity: (Stretching and strengthening), especially if it involves the muscles of the groin, abdominals, buttock, inner thigh or piriformis. Microtrauma to these muscles from over strenuous activity may cause trigger point or activation of latent trigger points that refer into the bladder or pelvic floor region. Don’t avoid working these areas, just be cautious.

Most IC patients know more about their bodies and their condition than any of the health professionals working with them. Listen to your body and pay attention to the signals. There may be increased symptoms if you overdo it at first, but keep working at it until you find a balance that allows you to improve your overall condition without irritating your IC.