I just finished my last final of physical therapy school and now only have my last rotation in pelvic floor and the PT boards exam left before I can practice. With school coming to a close, I've thought a lot about how I got here. I've blogged about my medical journey for seven years now, but I've never put my entire story together. A few months ago I was asked to write my story for Pelvic Pain Explained, a book written by two physical therapists that is due out in January 2016. I am thrilled to share my essay with you now and hope you look for it when it hits shelves in a few months!
Part I:
"Birds
make great sky-circles
of
their freedom.
How do
they learn it?
They
fall, and falling,
they
are given wings."
-Rumi
(translated by Coleman Barks)
I was
a busy college freshman only concerned with three things: my studies, tennis
practice, and going out swing dancing with my boyfriend. I was young and eager
to figure out my place in the world. Every day I would wake up early for tennis practice
and hit for a few hours. Then I would quickly wolf down breakfast at the
cafeteria and go to my classes before returning in the afternoon for weightlifting,
conditioning, and more drills. I was known on the team for my mental toughness
and my ability to do whatever it took to win.
That
strength would disappear when I first had sharp pain with intercourse the
summer after my freshman year. My boyfriend and I had been together for eight
months, and up until that point, sex had been pain-free. Obviously concerned, I
began seeing several gynecologists. The first told me I had a yeast infection,
gave me some medication, and sent me on my way. The pain continued, so I saw
another gynecologist on campus who told me I had a UTI, gave me some medication,
and sent me on my way. The pain only worsened, and one night during my
sophomore year, I felt such a stabbing pain that I found myself in an ambulance
on my way to the emergency room. The doctor on call disregarded everything I
told him and told me I must have an STD and tried to treat me for it. When I
explained this was impossible as I was in a committed relationship that
practiced safe sex, and besides hadn’t had intercourse in months, he shook his
head, said I must be lying and there was nothing more he could do. I left the
ER that night feeling ashamed and misunderstood.
I felt so alone in my pain - no one could see or
understand I was hurt. I closed up for months, unable to tell anyone what I was
going through. The pain continued to break me down, and I found it more and
more difficult to make it through my school work and daily tennis practices. I
began skipping classes because I had difficulty sitting through lectures and
placing pressure on my pelvis. If I had to attend class, I brought ice pack
pads to put in my underwear and wore bulky sweatpants so no one would know.
After continued frustration, I went to a fourth gynecologist who mentioned
vulvar vestibulitis for the first time to me. She explained this was a new
diagnosis for women who felt sharp pain around their vulva and referred me to a
specialist in Philadelphia for further treatment.
During my first visit to the specialist, I
was prescribed an estrogen-based cream to build up the tissue around my vulva.
I was also placed on an increasing dosage of an antidepressant as part of a
pain control intervention. It had disastrous effects on me. Over the course of
the next few months, I experienced extreme emotional swings. I would cry in the
shower and found myself yelling at those closest to me. The medication also
made me extremely groggy and made it even more difficult to focus on my school
work. My dad drove to my school several times a week to type my papers while I
would dictate from bed. I no longer felt in control of my body or my mind. It
was the furthest from myself that I have ever felt.
Not able to handle the side effects any longer, I
returned to my specialist and I remember sitting across from her in a small,
cold room. I was frustrated that my treatments weren’t working and wanted
answers. She looked into my eyes and told me that vulvar vestibulitis is a
chronic condition and that there would always be flare-ups, so I had better
start preparing to live with this for the rest of my life. I felt the last bit
of hope in me was shattered. I would never get better? How could I continue to
live my life like this? The word chronic felt like a prison sentence. It meant
both the certainty that I would have pain and the uncertainty of how it would
affect me. I was trapped. I sat motionless on the train back home that day,
watching the world whirl by me. I felt as if my life was rushing past me and I
was missing it. To make matters worse, this visit coincided with a bad break-up
only weeks later. We had been together for two years, but the weight of my
illness became too much for him to handle. I believed no one would ever love me
again, that I was cursed to go through this life alone. There was no sense in
looking ahead to the future. I was now living day to day.
Since conservative treatment had failed, my
specialist signed me up for a vestibulectomy. If the vulva were a clock, this
surgery would essentially cut out 4:00-8:00, the portions that were causing me
the most pain, and would replace them with internal vaginal tissue. In my case,
the issue with this last resort surgery was its narrowed focus. It would cut
out the place I first felt pain, but what if there were more to the story? What
if my pain came from elsewhere? These were questions I did not have enough
knowledge to ask.
It was at this point that I turned to writing and
started a health blog called “Sky-Circles.” The title was based on a poem by
Rumi about having hope in the face of struggle. I had always been an avid
reader, but I turned to poetry when I was sick - not as a hobby, but as a
necessity. I sought solace in the words of Mary Oliver and Rumi. And
eventually, they inspired me to write. It had been seven long months of
misdiagnosis, failed treatments, and continued pain that I had kept hidden from
everyone but my immediate family. Writing was cathartic and allowed me to share
my story. I found a nurturing online community where women could share their
experiences and seek guidance. Only weeks before my vestibulectomy, a reader of
my blog wrote to me and suggested that I see a women’s health physical
therapist because something else could be referring pain to my pelvis. She gave
me the name of Liz and Stephanie’s practice in San Francisco and after
researching what pelvic floor physical therapy entailed, I decided it was time
to become proactive about my health. This whole time I blindly let my doctors
dictate my plan of care. It was time for me to become educated before making
any more medical decisions. I booked an appointment and my flight, and two
weeks later, my mom and I found ourselves driving up and down the hills of San
Francisco. We would soon learn that up until this point, doctors had been
looking at my pain through a narrowed lens. We were about to step back and see
the bigger picture.
Part 2:
“But
who
can
understand what life is like
when it
begins to crumble?”
-Mary
Oliver
It wasn’t my first time seeing a women’s
health physical therapist. I had previously seen two in New Jersey who claimed
expertise in the field, but in hindsight, had no idea what they were doing when
it came to my case. The first only prescribed Kegel exercises and said I needed
to strengthen my pelvic floor. The second used a biofeedback machine to show me
I needed to relax my pelvic floor. Going to San Francisco was a completely
different experience. Liz performed a comprehensive evaluation that included an
internal pelvic and external orthopedic exam. She paid close attention to my
hips, testing my flexibility and strength. She also asked extensive questions
about my medical and athletic history. At the end of the visit she told me her
findings, which included limited range of motion at the hip, indicative of
labral tears. She explained the asymmetrical rotation of tennis led to
repetitive motion at the hips, causing stress to the musculature and joint. Liz
also explained that hip trauma can refer pain to the pelvis. She recommended
seeing a sports physician and having imaging done immediately. I flew back to
the East Coast feeling more educated and more in control of my future. I was in
the middle of my junior year and felt hopeful for the first time that I would
make it to graduation pain-free.
Sure enough, I had tears in both my left
and right labrum, and spent the next two summers getting them repaired. They
ended up being two of the biggest tears my surgeon had ever seen and required
extensive rehabilitation. I found a new pelvic floor physical therapist in NYC,
who did extensive internal and external manual physical therapy work, as well
as strengthen and stretch my hips. We discovered my pelvic floor was extremely
tight, as well as my obturator internus and piriformis muscles. This was an
explanation for why sitting had been so painful. Slowly, I started improving
and feeling more like myself. My hips became stronger and I felt ready to get
back to my life. When I became a senior, I was named captain of my university’s
tennis team, an accomplishment I thought I would have to give up for good. I
put my patient identity to the side and became an athlete again. I played my
heart out, but as the matches continued, the pain in my hips returned. I had to
leave halfway through the year to focus more on recovery.
Although my hip surgeries were successful,
I was still having setbacks in my treatment. I continued to have pain
throughout my body. I found a new pelvic health specialist and went through two
years of traumeel injections, a natural anti-inflammatory to help reduce pain.
She would give them to me at certain trigger points around my vulva, vaginal
opening, gluteal muscles, and hips. The injections only lasted a few minutes,
but needles going into your vagina and deep into your muscles is not an easy
procedure to sit through. I would have to bring a pad for the walk home to
prevent the blood from staining my underwear.
Around this time I finished my degree and
accepted an exciting opportunity to work in environmental advocacy in Denver. I
wasn’t healthy yet, but I was tired of waiting to start my life. In many ways,
I needed an escape. Unfortunately, after
less than two months of working, I called home crying and explained I couldn’t
do it anymore. My parents, steadfast in their love and support, picked me up
from the airport that weekend.
Back home, I went through yet another surgery, repairing tears
along my pubic bone and surgically releasing my tight adductor muscles. I was
infuriated and upset that yet again, my life was back on hold. I still had
difficulty sitting for longer than 15 minutes and dealt with constant,
unshakeable pain. But giving up wasn’t an option for me. I went to physical
therapy after my third surgery and was referred to a pain doctor for
prolotherapy injections. These differed from my previous injections because
they were more aggressive and required longer sessions.
Every month for the next year I went through trigger point
injections in my hip, pelvic, and gluteal regions; the idea being the irritant
glucose solution would trigger the body’s natural healing process and repair
damaged areas. Each treatment was over an hour
of repetitive injections with long needles. Out of all the things I went
through, these treatments were undoubtedly the worst. During the first one, I
was unprepared, but managed to stay silent until I curled up in the back of the
car while my mom drove me home. I cried and cried and cried. I cried out in
pain, for going through something so awful, for not knowing when it would end.
I cried because I wanted to be braver, stronger, better. I cried because it
felt right and because I needed it and because I wanted to feel something other
than pain.
And so, having been there myself, I want to
tell you that it is okay to be at your worst. To cry your heart out because you
feel defeated and alone and scared. It’s okay to feel pain, to lose control and
run away for awhile. It’s okay to lean on your friends and family, even though
you have been for weeks or months or years. It's okay to be vulnerable and ask
for help and see a therapist. It's okay to shut yourself down and lock yourself
in your room. Just do whatever you can to make it through the day. Know that
change is the only constant in life, and tomorrow always brings new
possibilities. After six months of enduring the difficult prolotherapy
treatments, I finally started to notice a decrease in my pain.
Part
3:
“One
day you finally knew
what
you had to do, and began...”
-Mary
Oliver: The Journey
I continued to document my medical and emotional struggles online
since writing was so therapeutic. My blog began to grow in readership as more
women searched for answers. It soon reached tens of thousands of readers from
across the world. What began as a personal release became an avenue to spread
awareness about an unknown and too-often misunderstood topic. I unexpectedly became a confidant and mentor to
others struggling with pelvic pain. I even appeared on an MTV True Life
episode to further advocate women’s health, especially the intimate connection
between the hips and pelvis. I received hundreds of emails from readers
expressing their gratitude for my openness and asking for help in their own
medical struggles. As I read more of these emails, I realized I could offer
more than just an encouraging response or a referral. I realized over these
past few years, my path continued to lead me back to women’s health.
One day, I was sitting in the exam chair at my specialist and
suddenly knew that I should become a women’s health physical therapist. Despite
the barriers of going back to school and my continuing health problems, I
wanted to help others find answers sooner than I found mine. I wanted to offer comprehensive
medical care that looked at the whole body, the whole person. I wanted to help
others overcome struggle and hardships and help them
persevere and make a meaningful life for themselves. And so, I set off to give
my own life more meaning.
In August 2012, I started at Thomas Jefferson
University in Philadelphia, PA. For the past three years, I have worked towards
my doctorate degree in physical therapy and my dream of becoming a pelvic floor
therapist. As I find myself mere months from graduation, I am excited and eager
to begin and help my patients heal. My dream is to develop a practice that
focuses on holistic pelvic health, especially female athletes. I want to
develop protocols for these women, to prevent injuries like mine from occurring
to others in the future.
I have been able to focus on my health, as well
as my schoolwork. During the first year of school I worked with a new pelvic
floor therapist in Philadelphia to manage my residual pain through aggressive
manual work, strengthening exercises, and stretching. I am happy to report that
after that first year I have not been back to physical therapy and have stopped
all injection treatments. I have also been able to fall in love and have
pain-free sex for the first time in five years I am beginning to love my body
instead of seeing it as a battleground. I continue to live pain-free through
preventative care, such as maintaining a healthy, balanced diet, stretching
tight musculature, training with functional movement, strengthening my core and
pelvis, and utilizing good body mechanics. I also focus more on emotional
health, reducing stressors in my life, by meditation, reading, and yoga.
People often ask what helped me the most during
my recovery. With such a complicated medical history and trying so many
interventions simultaneously, it is difficult to pinpoint the exact medical
impetus for my healing. After going through physical therapy school, I firmly
believe in the strong connection of the pelvic floor and the hips. The
surgeries I went through fixed my body’s mechanical problems, while the
proceeding physical therapy strengthened muscles that were weak and stretched
muscles that were overcompensating.
The most useful thing for me during this entire
process has been the obtainment of knowledge. Self-education allowed me to take
control over my own health care once I started researching which competent
specialists to see. As a physical therapist, it’s a requirement to be a lifelong
learner, but I urge other patients to actively seek information so they can be
proactive about their health.
Part 4
“As for
myself, I swung the door open. And there was
the
wordless, singing world. And I ran for my life.”
-Mary
Oliver: Work, Sometimes
My story is about broadening perspective. What
began as a sharp, localized pain in June 2007, grew to encompass a journey
throughout my body and mind for the next seven years. When I was in the midst
of my pain, I would have done anything for someone to take it away from me.
When I felt the most broken, a dear friend gave me a small Japanese pot with
several gold lines. I thought it was an unusual gift until I read the card,
which said it was a piece of Kintsugi pottery. It is a Japanese method of
fixing cracked pottery with gold or silver. It is more than an art form, it is
a philosophy. The Japanese believe there is beauty in being broken, that cracks
should be celebrated and not concealed. They also believe the gold fillings
reinforce the pottery, making it stronger than it was before.
Now, looking back at the person I have become, I
would not change my journey. I am surrounded by family and friends, who have
gone through the fires with me and continue to support me. My experiences have
forged my life into something more worthwhile. Not only have I discovered a new
career, but I have also found love. I have been with my boyfriend for more than
three years and he respects the struggles I have been through, while holding
deep affection for the woman I have become. I used to associate sex with
suffering, but now we can explore passion and intimacy in a safe and
affectionate space. Better yet, as the sun enters our room in the mornings, I
wake up in his arms, no longer feeling broken or alone. He puts a smile on my
face every day and has taught me to be less angry and more carefree. We
frequently go to our local park and throw around an old football, running and
jumping for passes like two young kids who never want to come back inside.
It’s such an incredible feeling to sprint down
that football field with no fears or limitations. I am currently in the best
physical shape of my life, even better than my years as a collegiate athlete. I
go to the gym daily and especially love serious weight lifting. I have climbed
Kilimanjaro, the tallest mountain in Africa, along with several other high
mountain peaks in the United States.
Last year, I ran my first marathon for my 26th birthday. I remember my first
long training run and how difficult it was to drag myself out of bed and out
the door. Once I hit the trail, the road seemed endless out in front of me. As
my feet hit the pavement, images flashed through my mind of the past four
years. I especially remembered the difficult rehabilitation after my last
surgery. With the support of my crutches and parents, I repeatedly hobbled
around the living room table until I fulfilled the mile-a-day recovery
requirements stipulated by my surgeon. During that time, the road seemed
endless too. As hard as I tried, as strong as I was, I felt like I could never
reach the end of it. All I could do was keep my head down and power through
each step, willing myself to move forward.
The memories soon faded during that training run
in late September. The sun was out, the leaves were turning, and I lifted my
head up to absorb everything around me. The river ran along next to me as I
traveled further and further. The road used to be so frightening to me because
it was boundless and I never knew when or if I could get off it. Now I’m
realizing that’s the beauty of it. Health is not something we obtain,
it is a state of being. And it requires work every single day. That autumn day,
the road stretched out in front of me, and I let go of it all and just ran. For
the first time, I enjoyed how limitless it was. Because this time I could keep
running.
