Being in it, Staying fit

I am not a fan of pilates. Actually; I am, but not for my pelvic pain patients. Increasing intra-abdominal pressure for the duration of an activity, without giving the "core" muscles a break, seems counterproductive to me, and often causes intense pain for the women I treat. So, when I came across the "New Dawn Pilates" video, I was pretty skeptical. The creator of New Dawn was kind enough to send me a copy, even though I sort of bashed the concept in my initial contact with her (I did promise to keep an open mind). So, I pulled out my little mat and decided to give it a whirl.

LOVED IT!!!! Without reservation. All of my concerns about "pilates" were addressed, with clear instruction and proper caution. The DVD warns you when there is an activity that may be inappropriate for someone experiencing a symptom flare, and lets you skip to the next activity. EVERY activity that my overprotective mind was about to question was accompanied by a "please skip ahead" comment. One bit of caution: if you are at all questioning your ability to engage in an exercise program, please skip these items. They don't seem that strenuous while they are happening, but they can be problematic, so please, heed the warning!

Plus, Jenny Buttaccio (the creator, developer, genius behind this project), is a phenomenal person. I was so excited about the concept, I asked if she would consent to telling her story for us. She is an IC patient, and understands what happens to a busy life that gets railroaded by this horrible illness. She is truly an inspiration, and here is her story:

Molly: I remember seeing somewhere that you are an IC patient?

Jenny: I AM an IC patient. My IC symptoms began almost immediately
following a laporoscopy to remove an ovarian cyst in December of
2005. At times, the pain had almost been intolerable and I had began
to feel as though I was loosing my mind. I was fortunate to be
located in a city where doctors are familiar with IC, so I was able
to get diagnosed in about 6 months rather than average which usually
takes a number of years. At that time, my treatments were aimed at
trying to get me through the crisis, control frequency, decrease
pain, etc. I had just gotten engaged one week before my surgery, so
my initial battle with IC could not have been more UNTIMELY! By the
time I had gotten any treatment at all, I had lost weight, I wasn't
sleeping at all during the night and my hair was falling out! That's
why I say my initial treatments were aimed at trying to get me
through the crisis, I had a wedding to be at, MY WEDDING, in
Minnesota in November 2006 and I was in no condition to go anywhere!

Although most of the crisis is over, I am still trying to find the
right "blend" of treatments that will help my symptoms to be under
control.

Can you tell me a little about your personal journey with IC?

Jenny: Truthfully, IC is difficult. I suppose there could be other
potentially worse things in life, but IC is still difficult. I
believe IC poses a different level of difficulty. It's a discreet,
prolonged and confusing sort of experience. Quickly, you are forced
to become a different person. Suddenly and without your consent, you
are no longer capable of doing the things you usually do. Because
you don't know what is happening with your own body, it can be
difficult to communicate with those around you how you are truly
feeling. All you know is that you don't look sick, yet feel
incredibly bad. You feel as though your life is slipping away and
sometimes, you're not sure how much further down you can slip. In
the beginning, IC is a puzzling roller coaster ride.

I don't mean to paint the picture quite so grim, but things just
began to happen to my body and I had no control over it. I began to
have intense lower abdominal pain and pressure. Sometimes, the pain
was so severe that it was difficult for me to walk up and down three
flights of stairs to my apartment. I constantly had to urinate 20-30
times a day. There were days that I could literally sit on the
toilet (sorry for the visual) for 20 minutes just constantly going to
the bathroom. It was as if every drop of liquid in my body had to
make sure it found it's way out. I began struggling to work. My
social life took a dramatic turn. I could no longer spend time with
my friends. I loved to travel and had just been to Korea 2 months
before I developed IC. Traveling was certainly out of the question.
Honestly, I didn't even want to leave my house. I just kept forcing
myself out of bed each day to go to work. I am an occupational
therapist and I am certain there were days that I felt worse than my
patients. Really, no one had a clue about what was going on with me
because...I looked so "normal."

Once I was actually diagnosed with IC, I began constantly researching
treatments from a variety of approaches. I would spend hours and
hours on the internet searching for what else I may be able to try.
Over the course of 2 years, I have tried many many different sorts of
things. I have only found some minor symptom relief in a handful of
things. Although my symptoms have improved somewhat since the initial
diagnosis, I am still working with my doctors to find something that
will really cause a breakthrough in my IC symptoms.

Was there ever a time that you felt you couldn't exercise, or
wouldn't be able to again?

Jenny: This may sound strange but, no. Not really. Exercise to me has
always been as routine as brushing my teeth. Call me crazy but I
actually love to do it and my body craves a certain level of
activity. At a very young age I began swimming, then running track
and eventually getting involved in gymnastics for 10 years. As an
occupational therapist, I am constantly looking at ways that I can
modify skills, tasks and daily activities to promote a person's
ability to be more independent. My skills as an OT suddenly became
very useful to me when faced with my own chronic health issues. I
knew my ability to participate in exercise had changed, but I
believed I could use my skills as an OT and my fitness background as
a certified pilates instructor to modify some of my favorite
exercises and make them more suitable for me. Keep in mind I was
also heavily motivated by the fact that I was getting married. I was
determined to still look my best on that day! I did ALOT of
research, tried many different pieces of equipment and a lot of crazy
exercises to develop a program that was comfortable and effective. I
liked the exercises I had put together so much that I just kept
working out by myself in my own home.


What was the inspiration for creating this video?

Jenny: I began reading a lot of the IC forums and listening to other people in my life that had various forms of pelvic pain disorders talk about
how they found it so difficult to exercise. Many of the forums
discussed the types of exercises that people with pelvic pain issues
shouldn't do, but there was a lack of resources available about what
people could do. I wanted REAL exercise, exercise that could
actually help tone my muscles, help someone else loose weight and
perhaps even make me sweat a little bit (just a little bit). One day
I had been expressing my frustration to my husband about the lack of
resources and he suggested to me, "Why don't you make a video? Put
your ideas out there for other people who are searching for safe
exercise options." I had the very fortunate advantage of having my
husband, Tom, be a filmmaker/video producer. After talking with some
friends, fellow pelvic pain sufferers and a few specialists, I
decided I would create New Dawn Pilates: a pilates-inspired workout
adapted for people with pelvic pain. I wanted to inspire people to
not give up on having an active life and educate people that with
careful instruction and special modification even pilates could be
permissible among pelvic pain sufferers. Hence, New Dawn Pilates was
born.


Why "New Dawn?" What does it mean for you?

Jenny: I can't take 100% credit for New Dawn. That was actually my
husband's idea after throwing around multiple other titles. I had been driving to one of my patient's houses when I received his phone
call. "I've got it!" He said, "How about New Dawn Pilates."
Immediately, I loved it. See for me personally, my battle with IC
has been about rediscovering who I am now that my life is not going
the way I originally thought it would. There is such a large
emotional component that goes along with dealing with a pelvic pain
disorder. The challenge I think is this, to find some contentment
even in the most difficult of times. For me, the concept of New Dawn
represents the anticipation that a new day will arise in my life
where I am not always sleep deprived and in pain, perhaps joy will
come in the morning and the sun WILL shine again. It's really about
restoring hope to a community of people that often feel as though no
one understands,

Vulvodynia Support

There is a new, patient controlled, support group for vulvodynia sufferers. They have good chat forum, links to various web-sites and news, and some pretty inspiring stories. Please check it out, and if it looks like a good fit for you, by all means join them and add your two cents. Many heads and many hearts can make a huge difference in the lives of women that are dealing with a very isolating condition. In case the title link doesn't work: Vulvodynia Support

V is for Victory!

Vulvodynia, Vulvar Vestibulitis, Vulvar Dysesthesia, Vaginitis, Vaginismus, Vestibulodynia. It reads like a list of alien invaders, and for women afflicted with these conditions, it feels like it. These are words that show up as a diagnosis or diagnostic criteria with nearly 15% of all gynecological visits in the US today. That’s a lot of women, and this number doesn’t reflect the number of women that are mis-diagnosed or undiagnosed.

Let’s break down the laborious terminology here.

· Vulva- (or vulvo-): is a root word that means “external female genitalia,” which includes the inner and outer labia (lips) the clitoris, vaginal and urethral opening, and that little fold of skin-like connective tissue around the opening (the vestibule).

· Vestibul- : see above

· -dynia: pain (vuvlodynia – pain in vulva; vestibulodynia – pain in vestibule)

· -itis; inflammation – typically characterized by: redness; pain (often burning); maybe swelling; and tenderness to touch

· -mus: tightness or spasm

· Dysesthesia – (dys- impaired function; -esthesia: sensation) in this context, the sensory input from the vaginal area to the brain does not match the stimulus. Typically in painful conditions it means the nerve endings are hypersensitive, light touch should not cause searing pain, but for those with dysesthesia, it does.

Basically what we have here is a collection of symptoms that often serve as a diagnosis when no one can figure out WHY the symptoms have appeared. There are a lot of theories as to why this happens to so many women (some studies show as many as 50% of women will have these symptoms in their life-time), and there is constantly new research getting us closer and closer to the cause.

Here are some of the things we know (or suspect) that may predispose a women to having these problems:

· Genetics – a grant has recently been awarded to allow researchers to explore a link with certain genes that may cause an increase in the proliferation of nerve cells and irritant cells in the vulvar area, and genes that effect protein synthesis in these areas.

· Mast cell proliferation – these are the irritant cells mentioned above. Everybody has them, they are largely responsible for that histamine response you get from allergies, but for some reason they seem to be overly abundant in certain areas in certain people. They have proven that there is a hyperactive mast cell response in the bladder lining of interstitial cystitis (IC) sufferers.

· Chronic yeast infections – the constant irritation can cause the nerves to become hyper-sensitive, causing pain and irritation, even after the yeast is long gone. And please remember that thong underwear can carry yeast and other bacteria from anus to vagina very easily.

· Lichen planus, HPV, various bacterial and viral conditions.

· Contact dermatitis – This happens when a product irritates the area, and the nerves remain sensitized even after the irritant is gone. Soaps, perfumes, toilet paper, dyes in clothing can all be irritating. Here’s the kicker: many of the products we use to relieve vaginal itching or burning are hugely implicated in contact dermatitis. Anti-yeast creams are the biggest culprits, and so are anti-itch creams. Even prescription ones are considered to be causative factors. The safest way to handle a yeast infection is to get it cultured before taking ANYTHING, use the most appropriate treatment as recommended – but only once! If you are very sure it is yeast, and you use an over the counter medication, if it doesn’t work be sure your doctor knows what you tried, and the experts recommend that you not use a prescription cream if the over the counter doesn’t work, you are better off to use an oral medication.

· Pelvic Floor Dysfunction – O.K.; if you read this blog even occasionally, you knew I was getting to this. Pressure on the nerves from tight muscles can irritate the already hypersensitive nerves. Trigger points within the muscles can set up pain patterns that mimic vulvodynia pain when the muscle is stretched or tightened. Guarding (tightening up the muscle in anticipation of pain) can lead to vaginismus.

So what do you do? FIRST – go to a doctor! The most important thing is to rule out conditions that can be treated medically. If all the cultures come back negative, it is time to start working on the symptoms.

As a physical therapist, I help you try to eliminate pain. We use biofeedback and visualization techniques to teach you to relax that pelvic floor, and take the pressure off the nerves. We work manually (internally and externally) to eliminate trigger points and to improve the muscular balance around the pelvis. We use electrical modalities including therapeutic ultrasound, and electrical stimulation to help relieve pain. We educate you about avoiding irritants (diet, chemical, mechanical). Once the pain level is controlled, we teach you how to stay pain free, or manage flares as they arise.

A side note on my own personal treatment philosophy: The most effective way to deal with pelvic floor muscle tightness is to work internally on trigger points and muscle spasms. Many of my vulvar pain patients cannot handle vaginal work, and are so uncomfortable with rectal palpation that the costs out-weigh the benefits. With these women, I use as many indirect techniques as possible until we have achieved a comfort level with internal work. With manual therapy, you may experience some extra soreness the next day – but several days (or even two) of agony is too much, and not (in my mind) effective. It is imperative that you talk with your physical therapist during your treatment, don’t undergo weeks of “torture” because you think it might help. If you don’t tell your PT how painful it is, she will assume everything is just dandy. Chances are if she is aware of the problems you are having, she will be able to modify the treatments.

All of this is in cooperation with your medical team. There are medical interventions to help relax the muscles and control the nerve pain, and depending on the acuity of your condition, sometimes the medical interventions are what make it possible for me to do my job.

ad control

I do not choose or condone the ads that show up at the beginning of this blog. Recently an ad appeared whose claims and content are so far-fetched, with no documented research to support it, that I have requested that Google remove this advertisement from this site. Hopefully it will be gone within a few hours; and hopefully no one was offended by it's appearance here. Have a wonderful, healthy, prosperous New Year!!
Molly

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.

Holiday Happiness

“Put a little holiday in your heart” – LeAnn Rhimes

They are here. Tucked behind colorful Halloween and Happy Harvest displays in every store you will find the reds, greens, golds (and this year, refreshingly, jewel tones) of Christmas. And Hannukah. And Thanksgiving (but these are very small, you might miss them). Yes – the holidays are approaching.

For many of us the holiday season can be an emotional roller coaster. For people with chronic pain or bladder issues, or both, the highs and lows of that roller coaster can be extreme. I have a few tips that may help some of you. I would also encourage anyone reading this, if you have more suggestions, please post them as comments.

First, let me say – I love this time of year. From that first drop in temperature, sometimes into the ‘70’s, I start getting excited. I spend the next 4 months anticipating the brilliant falling leaves, biting cold, snow and ice, and all of the things I loved about autumn and winter that I remember about childhood. Hot chocolate by the fire, snow-ball fights with my brother. . . . . Reality check – I live in Florida, none of this happens. But I expect it, any moment. So, I decorate. Like a mad women. I also bake, sometimes compulsively. I really detest shopping, and I am lucky enough to be part of a family that loves phone calls and hand-made gifts more than “presents.” But, I digress:

The holidays are full of many things, but whether happy or hard, they are full. The extra activity, special holiday foods, parties and socializing, adds an enormous amount of stress to lives that are already full. So what can you do?

Number one: Breathe! And take breathers.

Decorating: Do you have to? If you must, do it in segments. It doesn’t have to happen all in a day or in a weekend. Remember if you put it up, it has to come down. So try to stream line into the most important things. If you can afford it, many lawn-care companies are offering set-up and take down services for outdoor lights and decorations, this may be worth checking into. Transitions from Halloween to Christmas can be nerve-wracking, especially if you are like me, and feel like everything has to come down as soon as the holiday is over. Try to keep it simple, and enlist family members to help.

Shopping: There is plenty of time to do holiday shopping, and starting early will make the whole operation more relaxed. Try on-line shopping, and if you really must touch it and feel it before you buy it, many of the large retail stores have “ship to local store” options. You don’t have to walk up and down the aisles, you often don’t have to pay shipping, and you get the best deal available. On-line shopping is also great for obligatory gift giving; clicking through pages of merchandise hoping to see “the thing” for Aunt Betsy, is way easier than wandering up and down the aisle of a store trying to find something that matches her ceramic poodle collection.

If you are one of those people that have to be in the stores at 5:00am on the Friday after Thanksgiving for competitive shopping; try to play it low key. Consider that your “fun” shopping day, try to have as much as possible done before, or plan on coming back after. Stay relaxed, find places to sit, watch people, let every one else be frenzied, you can sit down and watch the show. Face it, as energizing as grabbing that bargain can be, long lines and exhaustion have a way of dampening the fun. If you really don’t feel up to it, meet your girlfriends for breakfast or an early lunch, and live vicariously through them.

Know where the bathrooms are, and if there are lines, try to plan ahead. Having a friend team shop with you is a great idea, so you are not leaving a prized item in the path of the marauding hoards while you are in the bathroom. If you are taking a break, offer to hold the stuff - leaving your friends hands free to grab an extra one of those things you both really wanted.

One last comment on shopping: I am suddenly a big fan of gift cards. They can be combined, so people can get things they really want, even if no one person is able to afford to give it to them, they are the most appreciated gift under the tree with teens and tweens, and, they are tiny! You can do all of your shopping at the store front, never having to navigate any of the aisles. We live in a tiny little bungalow, all of our neighbors understand the need to avoid clutter, and I’m finally getting people to understand that I REALLY would rather have a phone call than more STUFF.

Food and Parties: For those of you on special diets, especially low acid, or low oxalate diets, holiday eating can be like walking blindfolded in a land mine. For me this is choice time. It is much easier to be uncomfortable for several days if I knew what I was getting into when I did it. If you don’t have your diet straightened out, and you don’t know what triggers your flares, be very careful. Eat before you go, it is harder to make good food choices on an empty stomach. Try Prelief or some other anti-heartburn medication prior to the event. It lowers the acidity of food and helps some people immensely. If you know you love chocolate, but you know it is going to cause a flare-up of symptoms – weigh the pros and cons. Is a chocolate chip cookie worth the pain and aggravation? Maybe. Is a handmade truffle of rich creamy dark granache from your best-friends sister’s mother in-law’s secret recipe worth it? Most likely. But make the choice, and make it consciously. Try not to eat things because it is in front of you.

Bring your own water to parties, it is amazing to me how often people only have unfiltered tap water available. If you are susceptible to sugar substitutes, be very careful with any sweet that you are unfamiliar with. They are putting sucralose in many processed snacks, even those that have sugar as a main ingredient. If you are eating out, ask about MSG in foods, and if you are eating at a salad bar, ask about vegetable washes. Even when you are trying to eat healthy, some of us have to be very careful about the additives on our food. Most places will have additive free menu items. Remember, if you have pelvic pain, avoid constipation and diarrhea, both of these will irritate the region, potentially causing a flare.

After the Party: First – during the party pay attention to how you are feeling. If you get stressed, start having pain, or realize that you have spent the entire evening in the line for the bathroom, it may be time to kiss the host and call it a night. At least you made an appearance, and some times that is all that is needed to fulfill a social obligation. When you get home, have the ice-packs or heating pad ready. Even if you think you are “OK” lay down with one (or two, or three) for a while. Put your feet up and breathe, quietly and calmly for a few minutes and try to relax. Give yourself a pat on the back for successful party negotiating!

Incontinence and socializing: Some of my patients suffer urinary incontinence, and even for those that have only occasional problems, Holiday diets and holiday schedules can predispose you to accidents – so if you think there may be problems:

• Wear dark clothes, leaks are less obvious.
• Skirts tend to be easier to “air out” than pants.
• Long shirts or sweaters that fall over your pants or a slim skirt are another good option.
  
• If you leak badly enough to need a change of clothes – dresses are not a good option.
• Bring an extra change of pants/skirt and underwear. The holidays are a perfect time for carrying around large bags of things you might need. An extra change of clothes discreetly left in the coat room in the bag that you brought the hostess gift or side dish in will never be discovered. And it is nice insurance
• If you typically use a pad, where a size bigger, and bring extras
• Even if you don’t wear protection, if there is a potential that you may eat acidic foods and laugh a lot (it’s a party, it’s supposed to be fun) you might want to consider a panti-liner.

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.

WANTED!

Just a thought -
I am looking for a physical therapist (or two) that is interested in working off commission.
Someone Motivated. Someone Caring. Someone Dynamic. Someone that has a Grand Idea, or a niche that they want to expand, but need to be in an environment that supports and encourages her (him?).

My office is in NE Tampa (Temple Terrace). I have lots of space, and plenty to keep me busy. What I want is someone with the drive to keep themselves busy, someone that is motivated by their patients, and has a desire for professional autonomy.

If any of you know this person - give them my name and number:
Molly Miller
Slainte Physical Therapy
(813) 985-8878

Thanks!

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