The tension in my pelvic floor muscles was causing me great pain, which was crippling to live with and difficult to explain to people. My best attempt = “My butt hurts.” Yes, I had suffered with an unknown butt pain ever since my -->Takedown surgery<--. Unbeknownst to me, I had literally become a tight ass.
INVISIBLE REAL PAIN
I struggled with this undiagnosed pain for over a year without clarity! Doctors ordered x-rays and CT scans to check for potential staples protruding from surgery, but nothing evident showed up. They ordered gut scopes (3 times to be exact) but nothing visible appeared. They prescribed medications for nerve pain, under the assumption that a nerve may have been nicked during one of my many surgeries. Narcotics didn't even phase the unexplained pain.
After much frustration and lack of answers, I went to the magical place where answers can be found - Mayo Clinic. Thankfully the Mayo doctors had a name for the invisible, non-imagined pain. After some "special testing" with the pelvic floor specialists there, it was concluded that pelvic floor dynfunction was my problemo.
THE BREAKDOWN:
*Pelvic Floor = The muscles attached to the pelvic bone, which are mostly used for umm....toilet stuff.
*Dyssynergy = Not in synergy/not cooperating!
*Dyssynergy = Not in synergy/not cooperating!
WHY ME?
So how did I end up with this sort of dyssynergy? I have a number of theories...
Hypothesis #1 = Colitis. Out of necessity, when you have diarrhea for like 6 years straight, you get pretty good at tightening those muscles.
Hypothesis #2 = Prior to my ileostomy reversal surgery, I was told by doctors that because my waste would be so loose, that I would have to "strongly hold back the urge"...I may have taken this to the extreme and severely over-tightened my poor muscles.
Hypothesis #3 = Anal surgery - My rectum was surgically removed. I assume that slicing through those muscles could attribute to some ongoing issues...
NOT THE ONLY ONE
Apparently I'm not the only person with Pelvic Floor Dyssynergy. Others include women after childbirth, those who've had traumatic/painful pooping experiences, and people like me, who've had colorectal surgery. Unfortunately certain events attribute to a lack of harmony in the pelvic floor muscles, which become greatly confused. When a person has pelvic floor dysfunction, they tighten the muscles, instead of relaxing them. (Essentially it would be like making a tight fist with your hand all day. At the end of the day, those muscles would exhausted from needlessly clenching those muscles allllll daaaay loooong!)
Hypothesis #3 = Anal surgery - My rectum was surgically removed. I assume that slicing through those muscles could attribute to some ongoing issues...
NOT THE ONLY ONE
Apparently I'm not the only person with Pelvic Floor Dyssynergy. Others include women after childbirth, those who've had traumatic/painful pooping experiences, and people like me, who've had colorectal surgery. Unfortunately certain events attribute to a lack of harmony in the pelvic floor muscles, which become greatly confused. When a person has pelvic floor dysfunction, they tighten the muscles, instead of relaxing them. (Essentially it would be like making a tight fist with your hand all day. At the end of the day, those muscles would exhausted from needlessly clenching those muscles allllll daaaay loooong!)
....My next step was to enroll myself into an outpatient physical therapy program at Mayo Clinic with my hopes high.
BREATHE!
BIOFEEDBACK THERAPY
During the intense 2 week physical therapy program, I utilized a special type of technology called “biofeedback”.
Hand-held equipment measures coordination between the pelvic floor muscles as they move. The feedback is displayed on a fancy instrument, which detects when the pelvic floor muscles tighten and loosen.
BUTT THERAPY EQUIPMENT
Biofeedback equipment measures movement by using either external electrode patches (as pictured above), or internal probes :/ or something far more evil - a rectal balloon. Yes world, I pooped a balloon. Actually, I failed, but I sure tried... Just one of many defining moments of my super awkward life...ya know, just hanging out with someone I met a few days prior, who just happened to be watching me try to pass a balloon... There are things you try to forget in life, things you swear you'll never repeat. Yet here I am sharing what I went through - because someone's gotta tell the world that not everyone who passes a balloon is involved in illegal things. Right? Ha ha?? I referred to the biofeedback program as “butt therapy”- rightly so.
I'M BROKEN!
BREATHE!
The first thing I had to learn was how to breathe properly, because breathing is very important to help the pelvic floor muscles relax. I had to UNlearn how adults breathe - with their stomach sucked in to look super skinny. I had to remember how I breathed as an infant - belly filling full of air and expanding outwards, then falling with exhaling. “Diaphragmatic breathing” is the technical term for this natural process. I figured out that I hardly ever breathe properly.
BIOFEEDBACK THERAPY
During the intense 2 week physical therapy program, I utilized a special type of technology called “biofeedback”.
Hand-held equipment measures coordination between the pelvic floor muscles as they move. The feedback is displayed on a fancy instrument, which detects when the pelvic floor muscles tighten and loosen.
Here's how it woks...
Electrodes are placed in contact with skin, and the results are visibly displayed on the equipment. (My gnome volunteered for the visual)
The visible results help patients recognize what they're physically doing, as well as re-learning proper coordination of the pelvic floor muscles.
The goal is to get to letter A (green) and be able to sustain it.
"A" indicates that the muscles are in a relaxed state.
Relaxed not meaning "I'm-going-to-pee/poo-my-pants". No worries folks, just regular 'ol relaxed throughout the day. (Most people do this automatically without realizing it.) Lucky ducks!!
The orange lights indicate the opposite, that the muscles are tight/unrelaxed. When I started the program, I couldn't even get the light below the middle line! (Not good)
During biofeedback therapy, I met with my specialist 3 times per day, for 10 days. We worked with the equipment and her knowledge helped me understand how to use the abdominal and pelvic floor muscles properly. BUTT THERAPY EQUIPMENT
Biofeedback equipment measures movement by using either external electrode patches (as pictured above), or internal probes :/ or something far more evil - a rectal balloon. Yes world, I pooped a balloon. Actually, I failed, but I sure tried... Just one of many defining moments of my super awkward life...ya know, just hanging out with someone I met a few days prior, who just happened to be watching me try to pass a balloon... There are things you try to forget in life, things you swear you'll never repeat. Yet here I am sharing what I went through - because someone's gotta tell the world that not everyone who passes a balloon is involved in illegal things. Right? Ha ha?? I referred to the biofeedback program as “butt therapy”- rightly so.
I'M BROKEN!
Overall the program was a difficult for me in many ways. At the end I was drained physically and mentally. It was very lonely at times, since I was at Mayo Clinic by myself for 2 full weeks. Hotel life, 925 miles away from home, just my gnome and I, bored outa our minds.
I struggled after every session because I felt SO BROKEN! Atop surgeries and chronic illness I've dealt with, now this odd dysfunction surfaced. The program definitely tested my patience. At the end of the program, I was discouraged to realize this would not be a" quick" fix. Its truly going to take time time to fully un-learn incorrect (breathing/muscle) habits and then re-learn the basics of daily life.
GOALS OF BIOFEEDBACK
1. Mentally distinguish between different internal sensations (relaxed vs tight).
2. Achieve the relaxed state in the pelvic floor throughout each day. (like everyone else does)
[Accomplishing these ideals will lessen tension and result in less butt pain.]
One additional benefit is what I refer to as...
3. "Life skills". I never thought the happiest part of any day would be effectively passing gas on the toilet. Seriously, I get sooo excited and want to yell, "WOO HOO! I FARTED!" Sometimes its the little things that count. Small successes are well worth all the effort.
FAILING MY HOMEWORK
Since returning home, I found it difficult to continue my physical therapy on my own time (with my own biofeedback device that I purchased for $400). Between working 2 jobs + life, etc, I have a hard time making time to continue my physical therapy. I guess its like anything in life though...
We have to make time for the things that matter to us! As with all things in life, reaping any benefit requires effort and time.
I struggled after every session because I felt SO BROKEN! Atop surgeries and chronic illness I've dealt with, now this odd dysfunction surfaced. The program definitely tested my patience. At the end of the program, I was discouraged to realize this would not be a" quick" fix. Its truly going to take time time to fully un-learn incorrect (breathing/muscle) habits and then re-learn the basics of daily life.
GOALS OF BIOFEEDBACK
1. Mentally distinguish between different internal sensations (relaxed vs tight).
2. Achieve the relaxed state in the pelvic floor throughout each day. (like everyone else does)
[Accomplishing these ideals will lessen tension and result in less butt pain.]
One additional benefit is what I refer to as...
3. "Life skills". I never thought the happiest part of any day would be effectively passing gas on the toilet. Seriously, I get sooo excited and want to yell, "WOO HOO! I FARTED!" Sometimes its the little things that count. Small successes are well worth all the effort.
FAILING MY HOMEWORK
Since returning home, I found it difficult to continue my physical therapy on my own time (with my own biofeedback device that I purchased for $400). Between working 2 jobs + life, etc, I have a hard time making time to continue my physical therapy. I guess its like anything in life though...
We have to make time for the things that matter to us! As with all things in life, reaping any benefit requires effort and time.
This is like reading my life story. Just got the "pelvic floor dysfunction" diagnosis myself. Can I contact you? Could really use some support right now.
ReplyDeleteYes Heather! kjk12@gmail.com Talk to you soon. :)
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DeleteHow gorgeous are u. How brave, determined and yr post was great. I am about to experience an ili reversal with J pouch formed in MaRCH 2017. I had UC since teenager. Pelvic floor assessment today graded 1 - 5, mine is 3. Yr tools were well explained. Thank YOu. How is it going this year for U?
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