Currently I am back at Mayo Clinic and just finished day 4 of the 2-week biofeedback program for pelvic floor dysfunction. I initially planned to post daily about how the program was working for me, but I became really overwhelmed over the past few days and just could not bring myself to do it. So many things happened that I did not expect, so I am hoping to help others who may be going through Mayo's program by documenting my own journey. I thought that biofeedback was going to be a relatively easy process that would show some sort of improvement early on, but I definitely misunderstood the process. I am now realizing that this biofeedback program is only the first step in a long journey that may take several months before any kind of improvement is felt. I try to give daily updates throughout the rest of this program, but this is how the first 4 days went.
Day 1 (2 appointments)
#1 (Evaluation)
At this appointment I met with the nurse I would be working with for the next 10 days and we discussed exactly what problems I
was having and how biofeedback can help. The nurse provided a lot of useful information and explained, in
detail, the different steps and goals of the biofeedback program. The appointment ended up being about 1 ½-2
hours long.
#2 (Biofeedback)
A few hours later I came back for an appointment
to actually start the biofeedback process. Once I got into the room, I was
given a hospital gown and led to the bathroom where I was instructed to remove
everything from the waist down and come out when I’m ready. When I came back out
the nurse had me lay on the table (on my left side) where she then inserted the
rectal sensor. It was initially very painful and uncomfortable, but she said
the pain should improve as my body adapts to the sensor. Being only my first
session, most of the time was spent learning what the different lights meant
and exactly how to read the biofeedback device. The device used in this program
is called “U-Control sEMG” which provides both visual and auditory feedback
with pelvic muscle movement. My nurse said Mayo chose
this particular device because it is easy to use and not very expensive (since
patients are supposed to rent/purchase one to continue use at home using the
techniques learned during the program), compared to other devices. Here
is a link with device information: http://bio-medical.com/products/u-control-semg.html.
Once I learned about the lights, she instructed me to squeeze and release each outlet/muscle as a way
for me to become aware of my pelvic floor and coordinate the feeling of muscle movement
with the lights on the device. She said that finding those muscles may take a
little time, but was surprised by my lack of feeling in that area. Although I get
rectal pain/spasms on a daily basis, my nurse suspects that the two previous
abdominal surgeries damaged sensory nerves that are used to feel movement in the pelvic floor. She said that my lack of sensory signals will make biofeedback a more difficult process and
instead of relying on sensations, I needed to learn secondary methods that I could rely on, like learning
how to push my pelvic floor down through breathing techniques.
Day 2 (3 appointments)
#1 - #3 (Biofeedback)
At 8AM I came back for another session, but
instead of laying down, I transitioned to sitting on the commode. The commode was placed on a platform and it had an opening
at the bottom that the nurse used to insert and hold the sensor in place. Insertion
was painful, but I was able to get my numbers down from 7 to around the
1.8-2.1 range for a few seconds during the session. I was instructed many times
to take deep breaths, focusing on expanding my belly instead of my chest. I found
this extremely difficult, since I appear to be a heavy chest breather, but “tummy
breathing” pushes the pelvic floor down which is supposed to make evacuation easier. In between appointments I was instructed to work on tummy breathing,
but when I came back for later appointments, I was still having a hard time.
Day 3 (3 appointments)
#1 - #3 (Biofeedback)
When I came in at 8AM on Wednesday, my nurse brought in an occupational therapist to assist in helping me learn how to breath
properly. She hooked me up to a diaphragmatic breathing biofeedback machine
(with a sensor band that wrapped around just below my ribs and an additional sensor
on each shoulder) that showed me exactly how I was breathing on a computer screen. The
band was used to measure deep tummy breathing and the shoulder sensors were
used to measure the amount of tension I had in each shoulder. This tool was definitely
helpful in showing me how to relax and breathe properly, but my stomach was so bloated
and distended from being so backed up, that I had a really hard time expanding
it any further. It was also hard to look at so many different reading and try to coordinate my rectal muscles, belly
breathing, and shoulders all together since each individual part takes a lot of
concentration.
At my last appointment of the day, I went through the same
routine, but without the breathing biofeedback machine. I started off doing great,
trying to use the breathing/relaxation techniques I had used earlier, but out
of nowhere, my rectal muscles began to involuntarily squeeze and spasm. I experienced
similar spasms in the past, but this time it lasted longer than a few minutes
and caused intense rectal pain. Since it was causing so much pain, my nurse told
me to just take out the sensor and recommended that I maybe try external sensors
the next day, unless I felt any better. She also recommended doing an enema
that night as a way to relieve constipation and pain as well as improve my
ability to expand my belly more when I breathe, instead of my chest.
Day 4 (3 appointments)
#1 - #3 (Biofeedback)- Thursday morning I came back at 8AM for
another session. I used a warm water enema the night before (about 800 cc),
which induced prolapse, but helped relieve a lot of built up stool and pressure.
Even though I had the option to use the external sensors, my nurse said they do not work as well and would sort of be moving backwards instead of forwards. Determined
to make some kind of progress and feeling better than the day before, I decided
to try the rectal sensor again. Once I got the sensor in, I sat on a normal chair,
which was initially pretty uncomfortable, but I got used to it with a few adjustments.
While sitting in the chair, I hovered around the 1.2-1.8mv range on the machine. The enema from
the night before seemed to relieve a lot of bloating and distention which
allowed me to better expand my stomach with belly breathing. This made a huge
difference and with every deep breath, my pelvic floor began to relax and lower,
bringing my numbers down significantly.
The second session of the day went pretty well, staying at a low
tension level pretty consistently. There was definitely fluctuation, but I
lowered my level so much that I was able to move from the “3 scale” to the “1
scale”.
At the third session I started off on the “3 scale”, but through
deep belly breathing I was able to gain some control of my pelvic muscles by relaxing
and pushing them down. About 5 minutes in, I was able to switch back to the “1
scale” and bring my level down really low until random, but extremely strong
and painful spasms started. The levels immediately shot up to “N” (a high and unreadable level), forcing me to
go move back to level 3, and even there, I stayed at a very high level. The spasms
felt like someone was literally stabbing me up my butt and after about 5-10
minutes of trying different relaxation and breathing techniques, the spasms just would not decrease, forcing me to take out the sensor and end the session early.
Taking the sensor out was significantly more difficult and painful due to the tight
muscles squeezing around the sensor. Once I removed the sensor, the pain
decreased, but the spasms continued for about 1 full hour until it finally began to
settle down. It was an extremely disappointing end to such a good day...although
I am used to getting daily rectal spasms, they have never lasted as long at such
a high intensity. As aggravating as it may be, I realize this program will not “fix
me” by the end of these two weeks and this will be a long, ongoing process.
