Treating the whole enchilada

The people I distrust most are those who want to improve our lives but have only one course of action.

Frank Herbert (1920 - 1986)

I get emails from patients from all over the country, sometimes from around the world. Recently I had the opportunity to converse with a women whose story was very different from what I often hear, but is worth sharing, largely because this could easily happen to anyone with similar problems.

Here is an excerpt of her story:

“I went to a PT for a back/rib injury. She saw on my medical history IC and another condition I have. She said "we're going to ignore those and just focus on the ribs" and asked me nothing about it. It was a huge red flag to me but she seemed so confident with helping my injury that I got pulled in. On the second visit, as soon as I walked, in she very quickly rushed me onto this huge machine. It caught me off guard so I just hopped on and immediately my urethra hurt. I told her and she ignored me and went on with the instructions. I should have gotten right off but slouched down to take some pressure off the urethra. I didn't realize this was a bicycle- looked different and had a big seat, also recumbent. I have a severe case of IC and have had it for 21 years. I tried to ride a bicycle about 7 years and after a few rides and even trying different seats I got very flared up. Been in peri-menopause for 3 years now and my IC is worse in many ways and affected from it, so maybe that's why this was worse than the regular bike. I flared up very badly. This was 2 weeks ago. It hurts to sit on any chair, even the couch. A few other times with very bad flares I have had the same thing but usually only with my hard kitchen chairs, not the couch too.”

The lack of compassion displayed by this physical therapist surprises me, but the lack of education does not. This is a sad, but useful, warning to others that may need to seek help for conditions unrelated to IC. There is a lot of conversation on the IC and pelvic pain forums about how difficult it is to find a physical therapist trained to treat this condition. Finding a PT that is aware of it enough to effectively treat other conditions is just as difficult. This is largely a problem with how we are educated. Until about five years ago, physical therapy schools ignored the pelvic region. Some very proactive schools discussed post-partum rehabilitation. Our school made us buy a very expensive book on “Physical Therapy and Urogynecological Conditions,” I didn’t take it out of the wrapper until 3 years after graduation. Most of my class returned it for full refund. Now, many schools are incorporating a segment on pelvic conditions, but in most schools it is minimal and primarily focused on incontinence.

Our basic education teaches us how organ dysfunction (kidneys, bowel, liver, etc) can mimic or mask musculoskeletal pain. We are taught to screen for these things, so that we are not treating intractable low back pain that could be caused by a severe kidney infection, treatable with antibiotics. But I have never heard an instructor or PT (outside the world of pelvic floor PT’s) say – “Sitting with your low back rounded, working the hip muscles on a wide, flat seat can really cause a flare-up of urethral pain.” For PT’s that don’t work with this population the two seem totally unrelated, and it isn’t even on their radar screen to think about. For those of us that do, it seems elementary.

So what can you do?

• Always – communication is key. Unfortunately for the women in this example, the PT wasn’t listening enough to take her pain seriously. Remember that YOU are the expert about your body, especially when your condition is outside the expertise of your caretakers.

• Having someone trained in pelvic floor work is optimal. Most of us that do this did not start out as pelvic pain specialists. We have widely diverse backgrounds, having done some other type of physical therapy in “a former life.” I did Sports and Orthopedics for years, and am still very comfortable treating orthopedic injuries.
  

• Many places throughout the country are developing “Women’s Health” programs. If there is a clinic with a program in your area, start there. Chances are you won’t be seeing the pelvic pain PT, but at least there is one handy for your therapist to talk to, and get feed-back from

• Bring literature about your condition. There is no guarantee that they will read it, and they certainly won’t have time right then, but any chance to educate even one more health care provider will help increase awareness.

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,