“Put your shoes back on”
“Put my shoes back on?”
“Yes, shoes on, NOW”
It was Arizona and my feet, taped in 15 different ways to try to stabilize my back a bit, were hot. I won my semi-final match against Intermountain. Then I assumed my championship was over. During the match the rest of the team cheered each and every amazing shot my wunderkind partner made during the semis. I simply survived the court and the chatter in my head that kept questioning how exactly I ended up at first doubles at the National Championships.
See, I don’t do things like play in a National final. I do different things like walk the long hallway to surgery- I’ve done that five times. I also do things like lay in a ball once a month when my endometriosis is at its worst, or make a restaurant clean a grill just so I can eat something.
There was a break between semifinals and finals. Wunderkind gave the battle cry to another player he thought he was playing with in the finals. But, my shoes were on and the USTA was announcing my name when they read the roster over the loud speaker. We both were in shock.
Normal isn’t National Championship Finals; normal is missing weeks of practice for horrible flares. Yet, I hadn’t missed practice in months, either with the team or with my summer coach. I surpassed the two years surgery free mark this past July and between megaformer and instrument assisted soft tissue manipulation, I have left many of my pains behind.
The last words before I left to take the court were that, this was it. There was nothing else after the finals. Eight years to get here, I was going to have to let all the trauma, the years of pain, infertility, surgeries and suffering all fall away and step to the line. My tennis partner, an Instagram dream of how to play tennis, was the “gimme”. His court should be the court that nails down a win, no matter what. His biggest hindrance is that gets stuck with a wildcard of insecurity as his partner.
I played tennis two days before my first surgery. After the first movement drill I bled and tried just to survive the rest of the clinic. I assumed I would return to the court a new person, with a new body. And I did, for a few months. Then came an umbilical hernia and six months without serving followed by a year and a half where the fight for survival far surpassed any time I could find to play. I qualified for 5.0 Nationals, delaying a surgery to play. I ended up with necrosis and endometriosis. Before I knew it, I was three surgeries in with just about the worst practice attendance record of anyone who ever played tennis. I’d start at least two more seasons and add two more surgeries to the tally. More than one doctor said that maybe, it was time to give up and put the racket down.
For so many years my life was about endometriosis first, because it had to be, I had no choice. As I got better the challenge was for me to evolve to: life first endometriosis second. When the carrot of the national championship was on the line I dragged myself to practice or a match despite any of the physical noise that was going on. I played through labral tear flares. Earlier in the season I sparred my first match with Wunderkind after having been sick all day. I arranged my life so that by the weekend I had something left to give to a sport rather than just get into bed like I had for previous years- All this while managing my mother’s stroke.
Here it was the National Championship Finals. Beneath the Arizona sky, on courts nestled between the mountains of Tucson, I was going to plant that foot and swing that racket for the win, for my teammates sitting in the stands, for the coach that could not just go out and do it himself, for my mother that has fought for every step, for every little girl that suffers in anonymity, for every woman that struggles to keep her self through the journey of infertility, for all 176 million women with endometriosis who have no voice and most of all for me. This was my moment to drown everything that was taken from me. If I lead with my heart, my body is strong enough to follow.
Finally, at last, it was time for me to bring my best self.
3 sets decided it all.
I wish I could do a play by play. I can’t. After we shook hands with the opponents from Puerto Rico I went numb. I found another level and let my body just do what it has trained so hard for. When we finished I realized all along it was me. Yes, Wunderkind did most of the work-he is THAT good. On the line, in the line-up, returning serve, and gutting the backhand back it was me. The other team fell in tie- breaker and so did all those years since diagnosis.
I didn’t quit. I walked that hallway to surgery. I struggled through years of both physical and psychological therapy. I fought for the ability to hit every shot. I left that broken medical mess somewhere else and stood tall. I built my pelvic physical therapy business through every tear.
Endometriosis is loss, it’s a loss of the so-called normal paradigm that you dream of as a child. The battle of the disease unhinges your ability to feel fully competent and successful. When it was said and done, in a life dominated by loss, this story was written as a win. It ended in a blaze with me hurling towards the finish line, pumping my fist in victory. After six years of surgeries telling me to quit, countless hours of me in the back of the court pretending not to hear the voice in my head screaming that I was in pain. I took it all in every single moment, every point, every bounce.
That day out in Arizona, we brought home a 6.0 Mixed Doubles National Championship banner.
Time to put my shoes on again. Onto the next season…
Winter was particularly cold the year I first tried to play Mixed Doubles. The cold chilled the cement floor of the indoor tennis courts down to a therapeutic temperature for my back. Or so I believed, in the desperation to somehow continue to stand, play tennis, and survive this then unnamed pain that was slowly taking over my entire life. Friday nights, I would play for my spot on the team. Usually the men and the women that were clearly better than me would blow me away. I would limp from the deuce to the ad side trying to cover up the torment I physically felt. When time was called I would hide behind the big green curtains surrounding the courts and lay on the cold cement floor for just a few minutes of relief from that unrelenting back pain. One afternoon after blood work, I passed out behind those curtains. Quickly coming to and almost as quickly coming up with an excuse of why I needed to leave, I exited practice looking like a lazy player. No answers came from all that blood work.
Minus the passing out, it was years of playing tennis like this. Suffering from point to point, pretending to cover my pain but really just looking like I was a terrible tennis player. I was angry, bitter and in pain.
Diagnosis brought me a new word, endometriosis and a new life. The excision of uteral sacral endometriosis freed me from back pain, the removal of the calcified nodule lodged in S2 made me able to move. Diagnosis also brought more surgery, including a hernia surgery that made me unable to serve for 6 months while I recovered.
I qualified for USTA Nationals amidst those days of pain. I never made it, the team was unable to attend and I unknowingly, ruptured my tube on the tennis court. Nearly septic, I endured yet another surgery. After this surgery trying to play tennis barely entered my mind. Day to day life as I tried to recover both from a surgery and from a job loss due to the medical issues was difficult enough. If I did play, the pain was so bad I had to play on Saturdays. If I played on Sundays, I couldn’t hobble to my new job on Mondays. When all IVF failed, the court was one of the few places I could block out the trauma. No one cared about any of it there, including the 20 pounds I gained from all the hormone injections. Still I hobbled from the deuce to the ad court.
When I started playing indoors, tennis became more about a commitment than about a fun game to play during the summer. I was young and finishing my doctorate. As I played each weekend my life should have been playing out as well; a marriage, a child, a house. Life played out, but very differently than I imagined it. Practice was fit in between surgeries and recoveries, between infertility treatments. But as I got better, I emerged as well. I grew my pelvic physical therapy practice for women just like me. The last place I went before leaving to lecture in China and Brazil was tennis, the first place I went after my mother’s stroke for respite was tennis.
Before a fifth, and nearly emergency surgery, I planted my leg to hit a forehand and started to shake from the pain. I felt I could go no further and put my racket down. I went through that surgery finding endometriosis on my psoas muscle. I was so weak when I came home from the hospital I could not stand up after having bent down to the floor to pick something up. A year of strengthening and megaformer later, I moved from the deuce court to the ad court and didn’t notice any life altering pain. I took one last stab at competitive tennis and started my run towards Nationals again.
It wasn’t an easy season for a woman with endometriosis. Practices were late on weeknights and nursing early season wounds would keep me up long after practice was over. I had no control over when I would play matches because 5 surgeries later I will admit, I don’t have the best footwork on the court so yes, others in the lineup come before me—way before me. I capitalize on any chance I may get. This left me having to play through my period, one time after having vomited all day long. Traveling to matches and trying to eat healthy enough to play is brutal with my food allergies. It’s even more brutal to travel with a team that makes my compulsive ordering the brunt of a joke. The social woes of life with endometriosis are not always gracious and kind. I had to learn to bear weight on the right hip joint again after all its trauma. I also discovered, pain or not I had to move on the court. I am not pain free, but I am going to have to play like I am.
I never could have imagined in the darkness and the cold, laying behind those curtains, so desperate to feel better (to play better) that I would be here. I have pushed hard to come through the medical horror show of endometriosis and stand at the line to put the ball back again and again.
I’m ready to go to Tucson, to play USTA Nationals and celebrate a season where I have been along for the ride of a lifetime. This is a new time-my time, a time to celebrate just how far I have come and revel in the wellness I have fought so hard to achieve.
There aren’t a lot of do overs but out there at Nationals on the court I get to take back the bad bounces endometriosis handed me. My ability to have children, my ability to eat normal food, the ability to earn a living with ease, the ability to participate freely in relationships, the ability to get through most days without a nap all have been affected by endometriosis. It’s been a lot of years of playing through the pain, but I still remember a dream of winning before being quashed by a disease. Out there in Arizona, I get a do over. I get to ease the memories of walking down the hallway to surgery again and again.
It’s been a long and drawn out fight against a disease, let’s hope there is nothing long and drawn out about raising a championship banner.
My name is Sallie Sarrel and I have endometriosis.
I am a daughter, a sister, a friend, a physical therapist, a Pilates instructor, a runner, a tennis player, a poodle owner and a world traveler. On my average day, I rise at 6 am to workout assuring that when I lift patients my back muscles will be loose and warm. I then pack a gluten free, dairy free, soy free, grain free, no refined sugars lunch and go to work. Once there I see on average 12 pediatric patients before I switch practices and see 2-3 patients with endometriosis. On the days without pediatrics, I take up to 9 women with endometriosis in my private practice. I come home, play with my two 5 pound doggies and then spend the rest of my evenings caring for elderly parents. Somewhere in all of that, I also take 15 different herbs and do a 20 minute self care uterine and abdominal massage every day. I field phone calls, texts and emails from patients and potential patients sometimes until 11 o’clock at night. I write abstracts and fly to international conferences on my own dime, in my spare time.
I have built a business despite the financial and personal challenges that come from having a chronic, incurable condition. I have used my voice to ensure that women do not endure the harrowing journey to diagnosis that I had. I make certain that even if it is only in a gym I play hard. I take time for myself (rarely) and I persevere ever forward.
I endured four surgeries and countless pelvic floor, dietary and fertility treatments. After a surprise oophorectomy devastated me physically and emotionally, I chronicled my healing process exposing women to an honest depiction of the depths of this disease. My lectures at one conference on the value of pelvic floor treatment for women with endometriosis, was delivered days after fertility treatments had failed and a poster presentation at another was performed hours after a hospitalization ended. My lectures in China were in between bouts of vomiting from my period. Last year, just a few weeks prior to a fourth surgery, I gave a pre-Congress course at the World Congress of Endometriosis in Sao Paulo, Brazil. I never fail to show up at an event with high heels and a smile to inspire women to never let a disease rob you of your best self.
I am bright, talented, creative, and funny. I embrace all the gusto of life. I am stronger than any woman should ever have to be. I can cook, nail the down the line shot every time, run a marathon, fix a toilet, and do something on a really strange exercise torture machine called catfish. This fall I have learned the art of being daughter and medical caretaker under difficult circumstances all while I was trying to heal from that fourth surgery. I was raised to do everything to the fullest, to be competent, considerate and compassionate.
My name is Salle Sarrel and I have endometriosis.
What I am not is a champion of victimhood. I am not waiting for someone to fix me or coddle me or take care of me. I am tough because I do not have the luxury of being weak. Endometriosis taught me that. I am a survivor who has worked hard physically and emotionally to move beyond my disease. When I have needed care I have done whatever it takes to get care, the best care I could have at whatever time of my life it is. I have done my physical homework and despite frustrations, I do what my body needs to be healthy from going to bed early to experiencing pelvic PT as a patient. I take my experiences and try to teach others how to navigate this difficult path endometriosis has set us upon.
It has not been easy- easy may have been saying I cannot or caving in to sweats on the couch in front of the TV when I am in pain. I am not going to lie, that would have meant years of my life would have been spent in sweats lying in front of the TV. I suffered, so much suffering that when I torsed an ovary I lived with the pain for 11 months because I am always in pain and did not know better. I have cried; cried from pain; cried from painful sex; cried as I feel forgotten in this world; cried as I mourned the loss of the motherhood ideal. I have even cried from a bowel movement a few times prior to treatment. I have experienced surgeries and emergency rooms alone. I have three different sets of wardrobes: one for a good day, one for a bloated day, and then all the stuff that doesn’t aggravate my belly button.
I am not a parent- endometriosis quietly took that from me as the 15 year diagnostic delay ticked away at that dream.
I have stood up to show women and men worldwide that we live with this disease. We are broken and whole all at once. Our struggles are real but we have hearts that feel and souls that laugh even through the darkness.
Endometriosis Awareness Month is March. It is a call to action, for all 190 million women with endometriosis to tell the world who they are.
My name is Sallie Sarrel and I have endometriosis.
While waiting for my exam results for a cardiopulmonary practical in physical therapy school with everyone around me basking in the glow of love my phone rang. The three-pound pay-per-minute blue plastic phone rang over and over until I finally picked up. He said,” Happy Valentine’s Day. We want different things. It’s over”
I was dumped one Valentine’s Day.
I’d love to say my heart broke. I mourned the relationship, ate chocolate and found someone new and better. The chocolate was dairy free and I have dated far better men. Yet, every Valentine’s day I remember sitting on the floor in physical therapy school, clutching that blue plastic clunker while I cried. I was waiting for my turn. My turn to go down the aisle, my turn to have a child, my turn to feel safe and secure that amidst all my craziness and stress I can always go home to peace and love.
More than 12 years later I know in the wake of a disease diagnosis the concept of safe and secure was left on the operating table, maybe my fourth or fifth time around. I made all the decisions myself, when to have surgery, who to have surgery with, how to pay for surgery, how to rehab from surgery and how to manage my disease day by day from hot packs to megaformer all on my own.
We had been out to breakfast the morning before that Valentine’s Day call. I had never heard the word endometriosis or even suspected anything was less than normal about my killer cramps that leveled me every 28 days. It didn’t occur to me why my back pain was so very bad that morning in the diner. I sat in the booth hunched over my leg, which was pulled in tight towards my body. It was the only position I could find to remotely relieve the back and side pain I was having. Taking a deep breath was challenging. Navigating a menu while trying to explain to the waiter that I needed everything free of gluten was insufferable -gluten free wasn’t trending all those years ago. My date berated me for being in pain. Over and over again he kept harping that I was a joke as a physical therapist if I was the one in pain. The belittling went on and on that I was a failure in life if I couldn’t simply sit at a table in a restaurant and eat normal food.
We had been intimate the night before. I now know that all that breathlessness and suffering in the restaurant was the disease, then undiagnosed, invading my pelvis, my bowel and my soul. Regardless of whatever this guy said to me on the phone, he would never have gone the distance and he did not in anyway whatsoever possess the kindness or compassion to have endured the all encompassing struggle and successes of my life with endometriosis. Nor does he deserve to learn that I am well recognized and well respected in my field because my pain paced my passion and drive to ensure no woman ever sits in a diner and feels humiliated either by her date or her own body.
It is not easy to be single and to have endometriosis. It is not the same to maintain a relationship, as it is to start one in the middle of this storm. People like to hide the bad and ugly while they are dating and depending on the day, mine is always a part of my life. The disease comes with a physical, emotional, and economic burden. “I have pelvic pain” doesn’t read well on an Internet dating profile. I have scars, I get bloated. Hormonal fluctuations make me moody. Most of my pain is gone but I require more sleep and down time than most to fight the remaining fatigue. It takes me half an hour to order a simple meal in a restaurant because of my food allergies. I can never drag a casual date to a work dinner because most of the people I work with have seen me with and without a hospital gown on. And, well it really does depend on what is going on medically for what may or may not go on when the lights are out.
Most of all, it’s hard to find a man who wants to have children when the reality of having children will be difficult at best. How do I even answer, do you want kids on a first date? I discuss periods with everyone on earth professionally, but in many ways my missing ovary and the capability of the other one is private.
This Valentine’s Day I wish the Sallie now, the one who travels the world explaining pelvic PT and endometriosis would tell the Sallie that got dumped all those years ago that plenty of the rotten ones get away. There are even a few of the loving ones this disease slowly swallowed. It has been a long road of many solo Valentine’s Days since that phone call. The depths of the disease, for now seem behind me. This is what is it, today and everyday. How I navigate it is up to me. I am ready for whatever this crazy life with endometriosis brings next.
I don’t know why at this point of my life I decided to add in a Sunday morning death workout. Perhaps it goes along with my sudden need to get up at 6 am and run or my desire to hang upside down for half of my beloved Pilates class every Friday. It’s not usually what someone who has endured five surgeries in four and a half years chooses to do. Yet, every Sunday, I put on my shoes, walk 35 minutes to the studio(because apparently the death workout wasn’t enough for my already beaten up body) and sweat until I can only hear one single word, one solitary thought in my head: ENOUGH.
I am the only woman in the class who cannot plank off the back of the machine. Yes, that concept makes about as much sense to me, the person in the class, as it does to anyone reading this. My training as a Pilates instructor and a physical therapist does little help to me on Sundays. I am advanced enough in my strength and rehabilitation program that I can begin to push my a little bit further. I love my concentrate on form and the core is the basis for all movement philosophy that has carried me thus far. Unfortunately, there’s no room for that in the death workout, I am covered in sweat before even the chorus of the first song plays during the warm-up. Even in those first few minutes, I focus on the word enough.
I have had enough of this disease called endometriosis. I have had enough of the surgery train: planning a surgery, having a surgery, and healing from a surgery. It is ironic that professionally I am the voice for millions of women with endometriosis, yet I have trouble surviving it myself. I seemed fine last winter until all of a sudden, while getting ready to play in a tennis tournament, I hit the floor with leg and abdomen pain. Within just a few weeks I was planning a surgery between lecturing at the Word Endometriosis Congress in Brazil and seeing a new caseload in my own Women’s Health practice. I finished my summer contracts with just enough time to do a bowel prep for surgery. Everyone else went on summer vacation, I awoke at 515am to go have surgery, again for the third summer in a row.
It is time to say enough to living life trapped in a body controlled by pain, hormones and bloating. I am fed up with being the only woman in the room, most of the time, without a child. Most of all I have had enough of the sorrow and isolation beyond the endometriosis community that this disease brings. I have done everything right from using a top specialist to the best musculoskeletal practitioners. This is just how the journey has been for me.
I live a life predetermined by a disease I never even understood I had until it was too late to erase all its damage and then I suffered some more. My youth was spent enduring each period and battling back and leg pain with the nation’s top orthopedic specialists. Not one with an answer. Not one with a solution. So many years were spent trying to minimize my stomachaches with diets and oodles of holistic medicine. No one thought to mention that all this pain could be generated from a disease within. Surgery brought me freedom but the years of anguish have left me, likely, without a single egg from the remaining ovary that I have. The disease is gone, but the weakness remains, so day- by- day I push myself to be stronger.
Battling your body into shape after a surgery is like starting at zero and every time it gets harder. I was a Division I swimmer, a nationally ranked open miler in college. I went on in my thirties to compete in tennis and run marathons. We planned my third surgery around the USTA Mixed Doubles schedule. All that muscle, all that cardiovascular base disappears every time they put me under for surgery, no matter how good I am at my post-op walking program.
Every Sunday, I feel my soul wringing out the trauma of the past five years. It’s almost like every droplet expunges the fertility drugs, the anesthesia, and the collapsed veins from all the bloodwork. I can break free, I can learn to heal. Six months ago I couldn’t walk up stairs and now I am doing weighted single leg steps ups. Somewhere deep inside of me there is spirit left unbroken; softly it rumbles moving me ever forward. I am strong and I will tower over this monster inside of me.
So very many times have I pushed forward and slowly witnessed the hospital experience fade away in the horizon behind me. It is a mentally demanding experience to force your body down the hall to surgery again and again. It is time to bag up the experience and put all the unwellness away. Its like packing away my summer clothes, folding neatly each symptom into storage. Things like hip pain, bloating and stomachaches I hope to never unpack. So many times I have said never again, so many times I have been wrong.
There is no time during the death workout to be wrong. If I blink, I think I will fall off the machine, if I let all of the self doubt that comes with so many years of trauma sneak in, my feet will slide out from under me. This battle on Sunday mornings is only about me, it is only about how far I can push my body into its new zones of healing. It is about owning that I have had enough.
Dr. Sallie Sarrel, PT ATC DPT is a pelvic health physical therapist practicing in New York City and in New Jersey. She has chronicled her personal journey with endometriosis on Sallie Speaks and has developed rehabilitation techniques specific for women suffering from pelvic pain and endometriosis. Dr. Sarrel stresses the importance of medical clearance before returning to activity post operatively and also stresses that gradual return to play with proper re-education of the core is crucial for personal safety. She can be reached at http://www.salliesarrel.com
I left my hospital pillow in China. I bought more chopsticks, tea and knock-off tee shirts than my carryon could handle. Right there in the lobby, in a garbage can next to one of the big drums from the Beijing Olympics, I tossed the last remaining artifact of my surprise oophorectomy. I figured if I could hike some mountain range, during my period in a foreign country carrying (but not taking) every painkiller ever prescribed to me, plus two days worth of clothes and not get sick then it was time to leave that slightly damaged goods identity behind.
I remember going into the operating room in China. I will never forget the panic in the women’s eyes as they yelled “tong” or pain in Chinese. Helping them, standing in an OR suite not being the patient was the moment I let go of the shock from my previous surgery. The trauma was over and I was free to emerge into a new life. I stepped up into my new role as a practitioner. The next day gave my best lecture as the first PT to explain pelvic therapy in Nanjing.
A year later, I boarded a plane to the World Endometriosis Congress in Brazil by myself without even considering that pillow. I still don’t really understand how I ended up on that ride, but it was an amazing experience and an eye opening education to the real world of endometriosis research. Pelvic Physical therapy launched on the world stage as a critical component to the endometriosis team. Plus, I have to admit cachace in a boteco was pretty terrific.
In Brazil to be among so many researchers and so many young researchers at that, it was overwhelming to realize that we, as an industry, are the future of endometriosis. It is our charge to piece together the puzzle of endometriosis. Every minute of the World Congress, every presentation pushed us further towards this goal. It also solidified that I will go anywhere to speak. Presenting is my favorite part of surviving this whole ordeal with my body. It has not been easy to pace an industry while battling the very demon you treat. Somehow in between baggage claims in a foreign language and “un protesto” in the streets I managed to own this new International career.
Sometimes I think to myself, how is it that I can go halfway across the world by myself to define my industry with this disease but be so broken and destroyed inside that most days I should not be able to function. Most of the women working in pelvic physical therapy get to spend their days not treating performing marketing tasks or writing books to help build their practices. I squeeze in doctor’s appointments and colonoscopies. I bow down nearly every two years and have surgery, closing my practice multiple years in a row and hope that the patients understand because, after all, this is their lives too.
I sat in a keynote lecture at the World Congress as a researcher explained that they think endometriosis may have different strains. Some women may be totally symptom free after one quality excision surgery and other women will battle the majority of their reproductive lives. I felt as if the air had left the entire venue, I seem to be in the latter half of that statement. In an industry that fights pelvic pain I am almost ashamed of just how difficult the past year has been.
There are days that I am afraid to let my own industry know how much pain I actually experience. I am afraid that not being healed from endometriosis will mean the end to speaking engagements, international travel and worse the end to referrals. A new business constantly teeters on the edge and I fear more medical issues will destroy all I have fought to create.
It is lonely. It is isolating and it is terrifying to have to weather this continued battle myself. As someone who guides an industry with compassion I feel like I am going to crumble from the shame of continued suffering. I did everything right: good surgery with good surgeons; I ruled out other causes of pain; I aggressively treated any lingering pelvic floor issues. Still, I scream through the night every 28 days. I want to enjoy both the kids and the adults I work with. Professionally, I have found the balance and support I need to live with the hand I have been dealt. I feel like I failed as a patient on top of the overall sense of failure as a woman I feel from the disease in the first place. My parents don’t get grandchildren. I cannot eat normal food. My savings has been spent on hospitals not wedding dresses. I missed half a conference while laying in an emergency room. I left another because I was too traumatized by a failed egg harvest the week before to endure another surgical video. I am the shoulder to cry and lean on for every woman I meet with endometriosis, yet I am silent.
I can be silent no longer.
I will undergo my fourth surgery, my third excision with a specialist.
I have to believe that an industry that is working towards creating wellness in women and eradicating endometriosis will open its arms to one of its own as I battle through another surgery. It has been 11 months of an unresolved cyst and this is the only decision I have left to try to salvage my last remaining ovary.
It does not get easier the fourth time around, in case anyone is wondering. From the hospital to the team treating me I am supposed to know the drill already. On the outside I am maintaining my typical daily life, because that is all that centers me. I work out, I work, and I watch incessant reality TV. But, I am scared. I am nervous. My last surgery was an awful experience. I woke up to a life altering complication because sometimes that happens. I am afraid I will lose all of that confidence I felt in China and Brazil and regress into that state of fragility I felt before ditching that hospital pillow. I am worn out by people around me telling me what their opinions are to solve my issues. I do not want a child all by myself and hysterectomy never treats endometriosis unless adenomyosis is driving the pain. I am afraid my own industry will turn its back on me as I try to heal because they need the picture of health and not the portrait of the continual struggle endometriosis can be. I am afraid I’ll never use that passport I recently acquired to expand the Sallie Sarrel show.
In a moment of panic this evening I glanced over to my desk and saw my “Speaker’s Badge” from the World Congress. The last surgery was awful, recovery took months. The emotional downfall from the empty follicle syndrome was nearly crippling. Yet I pushed and moved forward creating a unique business all on my own terms. When the scars faded I gained an entire world. I’ve seen the Great Wall of China. I’ve Samba-ed in the streets of Sao Paulo. I healed and developed a voice for change.
Cutting me again feels like someone will slice through the life I have struggled so hard to create. Laying flat in a freezing cold operating room staring up at the lights petrifies me. Out there, beyond the table, past this next step is a whole world waiting for me.
There is going to be life beyond that OR table and there should be an entire endometriosis community waiting to “virtually” hold my hand through these next tough steps.
Good thing I can put the medical expenses on the travel miles card.
My thirtieth birthday I spent the day rowing a big yellow kayak streaming with pink balloons in my front yard. I didn’t go anywhere and the house is not near water but I was so excited and filled with life I couldn’t wait to get my new toy to the beach. I was a size four-after an intense year of training and using an anti-inflammatory diet- a few weeks from finishing my doctorate and any minute I was going to take on the world. Three days later I ran my first marathon on a pristine day along the shores of Lake Champlain. Every moment I breathed in life.
When I turned thirty my whole life was ahead of me. I was strong, just coming into myself as I finished my long years of advanced education. Life was supposed to be ahead of me. I went on a date every few nights. I loved to go dancing or spend my weekends at different parks running races. In the future I was to be this cute, little blonde mommy running a private manual therapy practice in between shuffling kids to all natural cooking classes, swimming, and preschool; all this after a whirlwind romance with likely some fabulous man who loved me and the beach. Life was going to be just like me: bouncy and exuberant. That’s what thirty marked to me.
The thirties for those of us who have sought advanced degrees and medical license are the years life evolves into itself. By and large it is filled with house buying, career building, weddings, and babies. Late night outings are exchanged for early morning business meetings and midnight diaper changes. I looked forward to all that with vigor, except there were some hang-ups. When I ran that marathon for my thirtieth birthday I stopped in every roadside bathroom to try to manage my stomach issues. In fact that anti-inflammatory diet I so strictly adhered to, was an attempt to quiet the pain in my back and hips that prevented me from sleeping at night. Another student in my physical therapy class pushed me off a physio ball as a not so funny joke and by thirty I was on my fourth specialist trying injections into piriformis to try to help me be able to sit down or walk without pain. Not to mention once a month every symptom got worse and no one could figure out what was wrong with me.
40 has arrived.
I cannot lie in bed, pull the covers over my head and avoid it.
I always was the woman with all life had to offer me in front of me. I never lamented not having a husband or a child, yet. It was yet to come. I hunted down exotic ingredients on the weekends to cook and had adventures. That young girl with life yet to come is how I defined myself. Except, realistically, endometriosis has done enough damage that 40 itself will forever change that definition. I know now normal isn’t going to be what I thought I was getting.
Somewhere between thirty and 40 all the exuberance and glee of a little girl kayaking in the driveway vanished and I became a shell of a woman poked and prodded by expensive specialists, needles and surgical scalpels. My thirties introduced me to a word called endometriosis and all that it has done to change my life. In the span of just ten years rosy, shiny life became an all -out daily struggle for survival that no one sees behind the facade of success. It makes me mildly ill to think my left ovary (missing from a surprise oopherectomy I have long ago made peace with) never made it to 40. The majority of my savings fuel my ongoing care. And, yes, the pinnacle of insults was last summer when a boarder line unethical and ridiculously expensive procedure failed to produce even a single egg. I imagined weddings and pregnancy, giggly bedtimes and tiny toes in the sand. Certainly not the decade I had: twenty-one different doctors, four surgeries, two discontinued jobs, and a failed egg harvest. I also started a practice, learned to surf, raised two puppies, played a heck of a lot of tennis, became a pilates instructor, discovered botox, and became the face of pelvic Physical Therapy for women with Endometriosis.
The one benefit of turning 40 is that I no longer have the time or energy to fuel relationships that don’t nourish me. I cannot waste my time being friends with people out of obligation especially after they have repeatedly demonstrated a complete void of compassion and appropriateness. I am lucky enough to journey through this world of endometriosis surrounded by people who are grounded by love and respect even if they have difficulty understanding the day to day battle I have with my insides. In the darkest moments, it’s that love that brings me peace.
To me, 40 feels like a nail in the coffin of my youth. I feel like somehow I should be so much farther in life and so much less filled with regret. It is not as if I sat by and allowed this disease to take me. I fought with everything I had and I spend my days, every day teaching others how to fight.
I climbed the Great Wall of China as my thirty-ninth birthday present to myself, well actually the guts to get a passport and just say yes to a crazy professional opportunity was the present. It was single handedly the greatest experience of my life. A jaunt to the World Congress on Endometriosis in Brazil solidified my ability to grab life and go. I travelled the world to teach that concept of self -empowerment through pelvic physical therapy. While I feel my next venture is teaching abroad when it gets quiet in my hotel room the first couple of nights I’m away I always have a part of me that feels I’m just making the best out of leftovers. Consistent with my overachiever personality trait is that I wanted it all the dreams of my thirties that included a husband and children and an international pelvic pt following.
40 is an unknown frontier. I put all my hopes and dreams into my thirties. I cannot conjure up new eggs or make the pain of each trip to the operating room disappear, but I can embrace this next step honoring the desires in my heart while feeding new dreams and goals. I traded my kayak for a Stand-Up Paddleboard this decade. I’m going to take the rest of what comes standing up, riding the waves of whatever this new number will bring.
“If all women learned math and became engineers, they could use their skills to find a cure. I wasn’t going to stand there and let this all happen to me, I was going to use my experience in a laboratory to change endometriosis for everyone,” uttered a well known researcher during my first dinner in Brazil during the World Congress on Endometriosis. The next few minutes of conversation focused on how her mother would throw her a bottle of gin to help her mediate her cramps when she was a teenager. “No one should feel that way, and I use what I have to look for the cause of endometriosis”
Realistically not every woman can learn math and cure endometriosis. Some may want to study something else, say become a physical therapist. As I sat there, into my second caiparina, having absolutely no idea what time it was after flying all night and speaking within minutes of arriving at the hotel, I liked this passion and this belief that, we as women with endometriosis, are charged with the responsibility of making our moments professionally count. Empowerment is our version of a cure.
This was one of the take home messages of my experiences at the World Congress. It was beyond impressive that the women who are changing the face of the disease have the disease. They are the best of what this field has to offer and they are greeting the world. Too many of us have had our lives permanently altered by endometriosis. Sex is painful, going to the bathroom is painful and for many, the pain caused by infertility is palpable every moment of life.
“Our goal is to treat the patient, not the lesion,” uttered another Women’s Health Champion in one of her lectures. The unique thing about women with endometriosis creating and driving their own research for endometriosis is that the patient and her voyage with the disease is never too far away.
There was something else that impressed me quite a bit about these women. They weren’t women who took an Internet course, or started an instagram page. They didn’t just create unproven theories on why endometriosis exists or pick at everyone else who is trying to generate proven research based theories. They took their lives and made this their passion. There is more to changing the face of endometriosis than relying on Dr. Google. Many of these women were PhD’s, a great deal were MD’s. Ok, there was one DPT. The researchers took entire biomedical labs and harnessed graduate students to study everything from epigenetics to the epidemiology of endometriosis. These women created legislation in their respective countries. They accessed government programs; they created school programs for teenagers to become educated on menstrual health. They hosted an entire World Congress.
I do understand that not everyone exists in the scientific world. I have patients who use their art to depict their experiences, I have others who use their writing or their ability to fundraise. The blogger I met did it for a living and left a lucrative career in journalism to write solely on endometriosis. Patient advocates attending from all over Europe, most paying their own very expensive way. And, yes then there’s me explaining to anyone who will listen that pelvic physical therapy helps all to live better quality of life with the endometriosis. The women of the World Congress on Endometriosis dedicated their lives to finding a cause, a cure, and hope for those who suffer.
These women provided one of the things we need most to drive funding and attention to the disease of endometriosis: data and research. If we are to change the disease for every woman even those who know not enough to ask for help, we must prove to the world the magnitude of the health crisis endometriosis causes for our women.
I meet women everyday that knows the magnitude of this disease. They go through unnecessary surgery or aggressive medical management. Abroad I have met women who had hysterectomies before they had sex because that was the only treatment for cramping that was offered. I have met too many women who had ovaries removed, just to see if it helped. I meet even more who suffer from the side effects of endometriosis, like pelvic floor dysfunction, who are never aware of the wonders of pelvic physical therapy.
I, personally, know all too well, the every day the magnitude of this disease. I arrived home to Mother’s Day, an entire day that reminds me I have battle scars that will always bleed from this fight. It does seem odd to me that we must prove the magnitude of endometriosis. But, if endometriosis becomes a wider recognized disease, more funding and more urgency will go into finding both the cause and the cure.
That will create true change for us all.
I sat at another dinner next to a biomedical researcher. “Do you have endometriosis, it seems odd a physical therapist should know so much about it,” she asked me.
“I truly believe women deserve better than the 18 years I suffered without diagnosis,” I answered.
And then she uttered the statement that stopped me in my tracks the entire rest of the Congress. “Eight years I waited for my daughter,” she said,” That’s 96 times I had to be tortured by a period, 96 times I went and felt like a failure as a woman, 96 times it didn’t matter who or what I was because infertility knows no boundaries. I took my whole career and my whole lab to stop that.”
Women initiate change in labs, in operating rooms, amongst the fields of the countryside, and even in physical therapy suites for women with endometriosis. Its easy to get lost in the difficulties of the day to day battle; to feel alone, to feel hurt by an uncontrolled illness as it quashes so many dreams. The World Congress on Endometriosis taught me to be inspired by the women around me. They have come through the tunnel of darkness called endometriosis to bring light for all who come next.
“OK, I’d love to go” has become my newest response to anyone who choses to invite me professionally anywhere. This began the jaunt that was the World Congress on Endometriosis in Sao Paulo, Brazil.
Two and a half hours to drive the twenty miles between the airport and the hotel. Two and a half hours of sheer panic that included “un protesto” in the streets complete with police hammering people with night sticks, countless reminders from the cab driver of “no ingleis”, and me in the back crying while spackling on some make-up in an effort to cover up the circles my under eyes developed enroute. I took the “Sallie Sarrel show” down to South America for one lecture and I was on the verge of missing it.
I was alone, over seas for only the second time, freaked out and yes, in horrible pain. As much as I asked it to, my endometriosis complete with this new very large cyst decided not to stay home in the US. My next frontier is teaching and lecturing. I have a message that women can empower themselves over pain, putting themselves in the driver’s seat instead of at the whim of doctors and surgeons. Pelvic Physical Therapy is just the medium to use to help the body and soul move forward from the onslaught of disease and all its causes of pain.
Shell- shocked by the trip I reached for my first cup of Brazilian coffee. I had no idea how to pay for it, I’ll go anywhere, but the details of exchange rates and travel usually escape me. A young woman with an Irish accent glanced at my badge that said “Faculty” on it and quickly picked up the tab for my coffee. She explained to me that no one in Brazil speaks English but this was her first World Congress so she was going to do everything to celebrate her research. She introduced me to four other women researchers: one from Scotland, one from England, one from France and one from Japan.
We believe as women with endometriosis we suffer alone, many of us in silence. Diagnosis takes on average 8-10 years. We walk down the hallway to surgery by ourselves, most of us multiple times. We have taken hormone treatments and done diets as everything we believed disappeared. For me, I weathered the entire fertility journey with no one next to me. This, after a long and arduous journey to diagnosis driven by pain. Every waiting room, every MRI, nearly all doctor’s appointments I have done alone. We have come to believe that only a select few we may meet through our struggles online can begin to understand our journey. We are mistaken.
As I tasted my first sip of the liquid gold that is Brazilian coffee, I looked around. The entire building was filled to capacity with people wearing World Congress Conference badges.
1400 people gathered for the World Congress on Endometriosis: 1400 people seeking a cure, 1400 people dedicating all of their 1400 lives to endometriosis, 1400 people with new research, new surgical techniques and most of all 1400 people striving to improve life for all 190 million women with endometriosis.
It was simply overwhelming to see so many doctors, researchers, nurses and professionals fighting endometriosis through their drive and their knowledge. It was humbling to witness so many people who desired to make a lasting and permanent impact on the quality of our lives. It was equally as humbling to realize that I am part of a select group of women who have taken their professional license and become the voice of this disease.
We are not alone with this disease no matter how much it feels that way. Every day in labs all across the world in every aspect of medicine from psychology to surgery to epigenetics and animal research someone out there is fighting for us. Treatment like pain is multifaceted. A cure may seem allusive but all over the world so very many are searching for it.
The coffee did calm me down. The researcher from Ireland explained her brain research to me, the doctor from Scotland studied how pain fibers are ignited by estrogen at the cellular level. The researcher from England made gains in the world of microsurgery and the surgeon from Japan examined the interplay between ovarian endometrioma removal and cancer. They were all nervous about presenting and they all wished me luck as one of the few physical therapists ever invited to the World Congress.
It took a trip half way around the world to remind me the future of endometriosis is upon us. Alone in the dark, childless and in pain even I grow to forget that we are not defined by endless ambiguity but by a worldwide community who strives for collaboration and a cure.
I made my way down to the conference room. In my shiny, high, red heels I wobbled towards the microphone. I began with an addendum not in my slides, “I would like to thank and applaud the organizers of the World Congress, as a woman with endometriosis to see 1400 people all striving towards better care for women with endometriosis I am honored just to witness the future of care.”
Today I spent 35 minutes on the kitchen floor crying. I haven’t worked in a week. I haven’t gone to dinner, hopped on the treadmill, or sat for more than twenty minutes. There certainly was no Valentine’s concert or flight to Florida for President’s week. I cannot drive further than a few miles. I can’t lift either if my four pound poodles up when they want to be held. I’ve seen nearly every minute of the Winter Olympics. I downloaded every Oscar pick. Mealtime has become an adventure of what can be eaten in bed. I’ll greet the world in a few months with slides I wrote while bouncing on a therapy ball to shift the weight off of my leg. I survived 20 plus years of misdiagnosis, three surgeries, one surprise oopherectomy, and a failed egg harvest. But, rock bottom was those 35 minutes on the floor in the kitchen.
I thought it was a “routine” cyst rupture when it started ten days ago. The day it began, I was relatively pain free. As I was getting ready for a tennis tournament I felt gut wrenching pain. Within hours my stomach swelled and my leg started to hurt. By Monday I was leaving work, testing and doctor’s visits Tuesday proved useless and now a week later I am still in life altering pain. This supposed cyst may or may not have ruptured and inflamed the sacral plexus. I am a Pelvic PT’s worst nightmare: nerve inflammation unmediated by treatment because the initial insult is pathological in origin. I have tried heat, ice, stretching, SI joint manipulation, neural mobilization, pain meds, herbs, acupuncture, ultrasound, e-stim, massage, chiropractic, and rest. A workout conjured up with my skills and that of a well trained pilates instructor helped for a few minutes. Then those slides had to be written and sitting putting pressure on the inflamed nerve fired up the whole situation, again.
I wonder what someone who is not a pelvic rehab expert would do in my situation. This is usually when I’m called into a case because unwinding pain in complicated situations is the ultimate benefit of a collaborative endo team that includes a physical therapist. It’s just very hard to treat yourself.
That lying on the kitchen floor crying thing seemed helpful for a few minutes, except now I have a headache from the crying, further insult to injury.
This is my life with endometriosis and I’m tired of it. I have nothing left in the tank to battle another hurdle and then another. I would like to workout when and how I want. I’d like to eat normal food. I’d like a few days without bloating and even more days without struggle. I spent a lifetime making all the right decisions and in the end I am again alone, in pain, unable to have a child, unsupported, and really sick of laying in bed with a hotpack, watching TV.
My day to day life is spent fighting for the health of women with pelvic pain. I have introduced an entire generation of women to the importance of integrating physical and manual therapy into treatment to restore quality of life in the endometriosis patient. I am the voice for the woman who knows not how to advocate for herself. Yet, I feel completely trapped and locked down from within in regards to my own body.
My pain is like a prison of chains. No one hears me when I say I hurt. Few believe I even have pain. I feel overwhelmed by this and the lifetime of pain I have experienced. I have fought for all women with this disease, but it feels as if I am left to rot and figure this all out on my own.
My cries are unheard and no woman, anywhere in the world should feel this way.
This is why we march.
Next month Washington DC and the Nezhats will play host to the Million Woman March. 200,000 women with endometriosis will gather to demand change. No woman should lie on the kitchen floor in pain. No woman should feel alone. No woman should want to give up because that is less daunting than moving forward.
We are not alone, we are a 190 million women family. We have 190 million voices worldwide. It is time for the world to hear us. Together we will destroy these chains and free ourselves from this prison called endometriosis.
Dr Sallie Sarrel, PT, ATC, DPT is a physical therapist specializing in endometriosis and pelvic pain in New York and New Jersey. She lectures world wide on the importance of a multidisciplinary approach to endometriosis. Through her work as a physical therapist and her blog she inspires women to empower themselves over their pelvic pain. Life with endometriosis is a journey, the Sallie Sarrel show takes us all on the trip.
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