"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)

Friday, May 8, 2015

My Story

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.


jesse said...

SO proud of and excited for you! It's been a privilege to see you rise from low moments to the magnificent person you are today. here's to a bright and brighter future!

Kathy Doherty said...

Hi Your story inspires me ! Im from NJ too, and am a middle aged mom of 3.. My story began with urinary issues. I was mis-diagnosed with IC, and saw various clueless docs, one of whom told me that my life as I knew it was over. I did PT but at the time ,2007-2012 found no one savvy enough in my issue .. I researched extensively but sadly saw so i many horror stories, that I worsened my condtion by unknowingly clenching my pelvic muscles out of fear. Mild sitting pain began in 2009. I too flew to see Step and Liz.. Step seemed great, but she was busy so I was handed over to Liz, who attributed my issues to grief over my dad's death in 2005. she ruled out IC or Pudendal issue as instructed me to get sympatheic nerve blocks to calm my nervous system.. sadly I got the wrong doc at Kessler Inst. He injected me with 5 different blocks, one per week, which worsened things. My sitting pain got worse and wore, An MRI showed a labral tear . I had that repaired ,,still no relief and by now my sit bone pain was getting worse, as time passed . Bt 2012, my kind but over aggressive pelvic pain doc sent me for nerve resection surgery with Dr Lee Dellon in Maryland.. Big mistake!.. 3 months later I had anal pain, and sitting was impossible.I ve had ups and down since, but finally met a savvy PT in Morristown NJ in 2014. I improved somewhat and became much more active as she got rid of many trigger pts and assured me that I don't have IC, PN/PNE etc. but instead a pelvic floor dysfunction,caused by hypertonic muscles stuck in spasm near the anal sphincter ..causing my rectal pain and bowel pressure. I gained back all the weight I lost (30lbs!) and look very healthy. I became more active using cushions to kneel on at events, restaurants etc. A few month ago, I began feeling stuck and having worse afterpain after actvities,, All my providers encourage me to continue being active (while pacing myself) as the anxiety and obsession with my pain is IMHO what's keeping me ill. However My
PT only used manual techniques. When I asked her about other interventions (ie trigger pt she would make some excuse..She recently opened her own clinic, where she now has cold laser and other options but not injections..She ruled out hip issues, but I think she must be missing something, tho she is savvy, she still attends classes, and is still learning. Ive been trying since 2006 to get well. I think the lack of knowledge with docs and PTs is the reason it's gone on for so long..tho knowledge is finally improving. Is there anything you can suggest to help me. ? Thx so much and best of luck to you!

Kathy Doherty said...

Pls excuse my typos in my long story. Hope u can understand what I wrote! Thanks again

Tamra said...

Hi Kathy,

I'm sorry you had a bad experience at physical therapy. It should not be that case at all. Since dealing with my own pain, I have become a pelvic health physical therapist and opened Inner Dynamics Physical Therapy in Ocean, NJ. You can visit our website at innerdynamicspt.com or call our office at 732-508-9926 and I would love to evaluate and help you.

All the best,

MD: Raju Ahmed said...

Thanks for sharing your experience.
fix posture