Intimate Issues

The true feeling of sex is that of a deep intimacy, but above all of a deep complicity.
                                                     - - - James Dickey

 Sex is a complex issue for all couples.  Having a chronic pelvic pain condition intensifies the complexity, and often limits the pleasurable aspect.  Face it;  much of our identity is wrapped up in sex.  Who we are as women (or men), who we are as a couple, or as an individual, all of these have our sexuality as part of the question.

I have posted about the importance of communication, and I strongly recommend seeing a certified sex therapist to help with the process.  And, before you start with "my partner is very understanding, we really don't have sex, but we are OK with that as a couple."  REALLY think about that.  Are you OK with it because you have accepted that this is the way it is - and you love each other, so you'll "get through?"  Do you ignore it so it is a "non issue?"  Just because you don't address a problem, doesn't mean it isn't there.  Just think about the possibility of improving intimacy.  This certainly doesn't require a sex therapist, but if it is an uncomfortable subject for you and your partner, think of the therapist as a guide.

Read the post "Sex, Lies, and Dyspar . . . who?" post for some tips and guidelines for what to do pre and post coitus to limit pain, and improve function.  

For a lot of people this information is not enough.  If vaginal intercourse is extremely painful, there are options.  Rectal intercourse is a little much for some people to get their heads around.  If it is not too "out there" for you, discuss it with your partner - they may not be as oppossed as you fear.   As a warning thought, if your pain is from the pelvic floor muscles, especially tightness or spasm, this option is not going to be less painful.  Be very careful when experimenting with new sexual concepts, both of your physical well being, and of your psychological limits.  Change takes time. 

If you are way outside of your box, allow for awkwardness (and fear),  and be very gentle with both yourself and your partner.   Allow a lot of emotional space.  Set up guidelines early.  Always, always, always have a way out.  You and your partner both need to be very comfortable with saying "no" or "stop."  No questions asked.  It doesn't matter if the block is physical, emotional or psychological, in an intimate situation, all limits must be honored.  Again - a certified sex therapist will help with working through the psycholgical and emotional blocks that come up.

There are also ways to mimic intercourse.  Well lubricated inner thighs can be a sexually satisfying alternative to vaginal intercourse.  And, before you do the "what's in it for the woman?" question, realize that sexual pleasure is more global for women than it is for men.  We really are wired for sex, personally I think more so than men.  Genital stimulation is not the biggest part of sexual arousal, or even orgasm, for most women.  Intimacy, closeness, passion, all the sounds and sensations surrounding sex.  For us it is a"whole body" process, and eliminating the worry and pain of trying for "penetration" can be surprisingly satisfying for both partners.

Oral sex is an option for some.  Many vestibulitis and vulvodynia sufferers cannot stand the stimulation of oral sex.  Again, proceed with caution.  Fellatio (oral intercourse with the male recipient) can be a problem for the woman because of positioning issues.  Most of the positioning options add a lot of abdominal pressure, which can increase bladder pain.  Play with positions, and until you are very comfortable, don't make orgasm a goal.  I also treat people with jaw, neck and headache issues, so if you are prone to these conditions, be VERY careful with oral intercourse.

Please add comments if you have postioning advice, or pre-post coitus tips. 

Brief Discussion

"What are you eating under there?"
               "Under where?"
           - 1st grade potty humor


The under wear question is huge with the vulvodynia/vestibulitis/urethritis population.  Everyone has an opinion, and, as usual, the answer is a very individual choice.

We were all told by our mothers (well, maybe just me) that white cotton, loose fitting, full coverage underwear is the best for our "girl parts."  Granny underwear.  And all of us, as soon as we had any choice in the matter, began exercising our individuality in panties.  Victoria Secret is a modern girl's best friend.  But wait - there is deep, good truth in the advice given to us about white cotton. 

Dyes can be very irritating to the external genitalia.  Unnatural fibres, and some natural ones (silk and wool) can irritate skin and mucous membranes.  Cotton seems to really be the best option for most people.  Even the cotton panel - the underwear industry's feeble attempt to combine beauty with health - doesn't quite cut it, unless the whole garment is made from some breathable cloth.  I have talked  to a few (OK, one) people (person?) that feels most comfortable with spandex - I do not suffer from any of these conditions, and spandex underwear will absolutely irritate the tissues around my vagina.  It is a very individual choice, but cotton really is best for MOST people.

What about style?  The industry has truly changed over the years, bikini briefs, french cut, thong (oh - I will get back to these), classic "granny,"  I'm sure they have a real name - but I've never met anyone that calls it any different.  My new favorite is the boy-cut.  These have the comfort of a brief, but without the elastic at the legs.  Tight fitting elastic around the legs can disrupt blood, nerve and lymph supply to the region - not enough to cause permanent damage, but if the area is already sensitive and irritated, there is no point in pushing it.

It is much easier these days to find pretty, sexy underwear with less irritating qualities.  The severity of your symptoms may dictate your choices from day to day, so if symptoms fluctuate, or if you are not that severe, you may have more options.  Lacy pretty fabrics are still OK, as long as they are breathable fabrics, and are combined with a white cotton panel.  Look for styles that are not binding around the legs, and if you are prone to bladder pain, look for styles with the waist cut either below, or well above the bladder.

Now it is time for me to get on my soap box and rant about thong underwear.  This style was virtually unheard of until the late '80's, except with male strippers.  When they first hit the scene, it was an instant "no panty line" success.  Everyone I knew that tried them hated it, but wore them anyway, because fashion is such a callous dictator.  Remember, this was the era of spandex leggings, wide belts and BIG hair.  Today they are so common that many of my patients and younger relatives can't even imagine wearing anything different.  Convincing people to give up thong underwear often feels like a culture war (I'm showing my age - it may even be a generation gap).  But, it is a HEALTH issue.  

Our rectum and vagina are seperate openings for very good reasons.  The bacteria that lives in our large bowell is essential for breaking down waste at the end of digestion.  There are also yeast in the bowell, and they live in a delicate balance with the bacterias.  None of these things belong in the vagina.  The vagina is a particularly friendly environment for yeast to grow and flourish.  Anyone that suffers chronic vulvar pain knows how bad yeast infections can be, how they can make things worse, or even be the precipitating factor in a flare.  Thong underwear can create a miniature superhighway for migrating yeast.  Direct route from the rectum to the vagina.  Not a good thing, and completely avoidable.

Remember, you always have choices, and the more educated you are about potential consequences, the better your choices can be.  If you are getting ready for prom or some other special occasion, and want to wear a super tight, sexy skirt, or some flowing clingy material - by all means, where the thong.  Be sensible, wear it for the evening, and go back to cotton whities for a few days after.

Share your stories (and opinions).

Book Review

I have been asked to review “Heal Pelvic Pain” by Amy Stein.  I normally disregard anything that promises to “Heal” conditions, particularly when the scope is as broad as Pelvic Pain.  Amy and her practice, Beyond Basics Physical Therapy in New York City, have an excellent reputation, so I thought I would at least give it a read.

First, let me commend Amy for tackling this project.  The nature of the beast is daunting, and she covers a wide range of pelvic issues, not only pain, but incontinence and other pelvic floor dysfunctions.  Her tone is warm and compassionate, backed up by the knowledge and experience of a veteran pelvic floor therapist. This is the real deal.  

The book gives a simple, easy to grasp overview of pelvic anatomy and the many causes of pelvic pain.  Remember – it is an overview.  Interstitial cystitis patients will be disappointed that the explanations are not specific to them, as will people with endometriosis, irritable bowel, and vulvodynia.  She really gets to the core issues that link all of the problems, and gives really good overviews of each condition, leaving the minutiae to others.  Later chapters discuss different populations, men, children, pregnant and post-partum women.  She even has chapters on healthy eating, relaxing, and better sex (really – this is an achievable goal, and the chapter is worth reading, even if you have given up on having a normal sex-life).

Chapter 3 is my favorite – and most appropriate for my patient population- “End The Pain.”  These are fairly standard exercises for relaxing the pelvic floor, and strengthening and relaxing the muscle that contribute to pelvic pain.  The best part is the easy, direct instructions and the very clear pictures.  Please read this chapter all the way through before implementing the exercises.  There are cautions about causing flares by jumping too quickly into the strengthening portion, and it is a good idea to know where you are going before you begin.  I also like her encouraging tone; exercise is an incredibly important piece of the puzzle, and staying motivated is difficult for all of us.

In “Give Yourself a Massage” Amy discusses how to do self massage: searching for and treating trigger points; abdominal massage; and internal massage.  This is a difficult topic in written format, and there are just not good graphics available to make it easier.  She does an excellent job of explaining the basics, and in a significantly less confusing way than I would have been capable of.  For internal massage I recommend that my patients use the EZ-Magic device, as it makes everything a little easier to reach.  If at all possible, I think it is still optimal to see a physical therapist that can train you on this portion of self treatment directly.  For those that cannot get to a pelvic floor therapist, this book is probably the best available explanation. 

All-in-all, I recommend the book, especially for those that don’t have easy access to a pelvic floor therapist, but also as an adjunct to the treatment you are receiving.

Thanks, Amy!  You’re patients are lucky to have you.

More New Friends ! ! !

I found a relatively new blog that really warrants mention: PELVIC PAIN MATTERS. The blogger, Bonnie Bauman, is an author, a chronic pelvic pain patient, and a fabulous, dynamic person. Her blog is chock full of information, and resources. She is very honest and open about her own journey, addressing her condition with humor and hope, and a single minded focus on finding effective and appropriate treatments.

She has a fabulous physical therapist and a fantastic doctor, and she uses them as constant resources. She also has a section on her blog dedicated to finding and posting information on good providers. So - if you have a doctor or PT or anyone else that has helped you immensely, let her know, she is compiling a list.

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.

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!

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.

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.

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."

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.