We’re excited to celebrate Endometriosis Awareness Month by bringing you the stories of those who know this disease best: all of you! We had an overwhelming response to our call for submissions last month, and we are very grateful to each and every person who wrote in to bravely share their accounts of what it is like to live with endometriosis. We feel there is no better way to raise awareness than to portray first-hand experiences, poignantly and courageously written by the real experts. Please take the time to read through them and remember – every day throughout March, new stories (and in some cases, links) will be shared, so check back daily!
We’re thrilled to kick off our Awareness Series with an interview conducted recently with Dr. Sallie Sarrel, a renowned Physical Therapist specializing in endometriosis and pelvic pain. We caught up with Dr. Sarrel at her practice in NJ to talk about how endometriosis has affected her life – and her profession.
Dr. Sallie’s Story
Dr. Sallie Sarrel PT ATC DPT is a Women’s Health Physical Therapist who splits time between New York City and New Jersey. Her long battle with endometriosis led her to develop a multidisciplinary program for women experiencing the chronic pain and muscular dysfunctions associated with endometriosis.
So – let’s get right to it. What’s Your Endo Story?
I had stomach issues, back, hip and leg pain for as long as I can remember. I would wake up at night all throughout my teens with pains in my foot. Even from my first period I had very heavy bleeding and clotting; plus migraines, lay-in-the-dark-and-cry migraines every period. My mother would tell me that women were supposed to have pain and that everyone lived with some kind of pain so I should stop complaining. I swam in high school and in college then later I took to running marathons and playing tennis so I thought the pain was from how hard I was on my body. I saw a chiropractor or a physical therapist at least once a week since I was 15 years old. My initial sexual experiences were painful, but my first gynecologists told me that was normal and wine before should help. Bloating dominated my life. My constipation was so bad it would keep me up at night, except when I had my period. Then I would have bowel seizing-bouts of diarrhea that squeezed my insides so tight I would sleep in the bathroom. I couldn’t sit down on my bottom, it felt like a rock was lodged somewhere in my sacrum. I couldn’t stand for long periods of time without pain. Plus I had horrendous food allergies, fluctuations of extreme moodiness, and fatigue. In the year before my diagnosis I saw 14 gynecologists, had 12 MRI’s, more ultrasounds than I can remember and 2 cat scans. They all were negative.
After hearing about endometriosis on TV, I decided I fit the symptoms and pursued the gold standard of the disease, excision surgery, for a diagnostic laparoscopy. A simple diagnostic surgery turned into a 6-hour procedure that gave me back my life.
In my post operative appointment my surgeon issued me a challenge: If I didn’t like what had happened to me- years of enduring misdiagnosis- I should take my medical license and change the treatment of endometriosis for generations to come.
That’s just what I have done. I started a private physical therapy practice for women with endometriosis. I traveled the world lectured on the importance of multidisciplinary care for women with endometriosis. It hasn’t been easy. I endured two more excision surgeries, an emergency hernia surgery, failed fertility treatments and despite the addition of acupuncture, physical therapy, and a specific exercise program I live with varying degrees of pain each day. But that’s minimal compared to my life before diagnosis.
How has being a Physical Therapist impacted your journey?
I am a physical therapist and an athletic trainer. My job is physical. For a very long time it was hard to advance in my career because my pain would hold me back. Not to mention surgery and treatment has a financial toll that prevents me from taking business risks. Just finishing my doctorate program in physical therapy was difficult. I had to be able to lift patients. I had to be able to demonstrate demanding exercises. I had to be able to get through hospital rotations without needing to urinate every few hours during my period. In medicine, your needs are secondary to everything else whether its an exam or a patient there is no room for back aches and crippling fatigue.
Being involved in medicine has defined my journey. In my early 20’s I suffered a freak skull fracture while working as an ocean lifeguard. Doctors attributed my heavy periods to the head injury. They offered me birth control pills. The pills made me sick and did not help my symptoms. In an effort to control those symptoms, I enrolled in cranial sacral courses. This was my introduction to manual therapy and I’ve never stopped pursuing more and more education in manual therapy.
In my first jobs as an athletic trainer when no one was watching I would lay on the training tables with hot pack and estim on my back for hours at time. I used the therapeutic ultrasound unit in whatever clinic I was working in on that spot in my foot to ease the constant burning. Incidentally, that foot pain disappeared after my first surgery. I changed my diet; I flew to gurus and meditated in tents. Any technique for back pain I would read about I would go to the person that wrote the article. I was so convinced my pain was musculoskeletal in origin that I went to every practitioner who might be able to help the back pain. For a few months I brewed custom teas that despite their $90 a bag price tag smelled so bad my neighbors complained. I wasted valuable time and financial resources on all these supposed “cures” for my pain. What I needed was diagnosis and quality interventions.
My love for exercise and fitness permeated my journey. Because the bloating and the pain were so bad prior to diagnosis I would torture myself in the gym for hours. The torture would continue when I got home, because I would rarely see results. After my first surgery, I discovered reformer Pilates. I went on to get certified to teach reformer and mat Pilates. It was easier on my body and taught my spine and core how to move again. On the reformer I felt supported and built up enough strength to stabilize my pelvis. My rehabilitation programs with patients now incorporate stabilization as well. After my fifth surgery I discovered the megaformer- a Pilates reformer on steroids, and have never looked back. My love for exercise but need for pelvic stability and safety has led me to present on the subject at international conferences.
Aside from working – which we know you do all the time! – what else do you like to do?
Freeing my pelvis from endometriosis has allowed me to engage in life again. I love playing tennis and am currently competing in a mixed doubles league. It’s a little tricky to schedule matches around my period, but luckily no one else but me has noticed every four weeks I have to sit out a match. I also love to travel. Before I was diagnosed sitting on a plane for longer than an hour or so was excruciating. But when we removed the calcified endometriosis from my sacrum the airways opened to me. I also love spending time with my beloved little poodles, Bailey and Dior, especially at the beach. Most weekends I am busy inventing new paleo, gluten free, dairy free recipes so I can look fabulous in either my athleisure or my gown at the Endometriosis Foundation of America’s Blossom Ball.
Let’s talk a bit about the way media often portrays the disease. Do you think this causes problems?
I never knew sex wasn’t supposed to hurt. I didn’t have a pain free bowel movement until I was 40. I missed school, work and lots of social opportunities because of pain and my period. I’ve had decent care after diagnosis, but I will never have a child. No one should have to endure this, ever. Years ago we didn’t have Google. The Internet and social media and all the efforts by the endometriosis societies and foundations have gotten us talking about endometriosis. I never even heard that word until I was 34 and everyone’s efforts have changed the face of this disease. We are prepared to help the next generation and I am so grateful for that. People don’t have to suffer alone.
Excision surgery excises the disease at its roots. This is currently our best defense against the disease. If there is pain post excision than we have a responsibility to incorporate pelvic physical therapy to treat the associated musculoskeletal pains. No one should have unnecessary surgery; no one should have an unwarranted hysterectomy. We owe our women better than this. When the media continually applauds treatments that don’t work and that do harm I fear we are failing our women. I’m tired of seeing things like “hysterectomy cures endo” or “Lupron is the same as surgery”. If endometriosis is present in the body and grabbing ahold of your nerves or peritoneum, just taking out a uterus and leaving the disease behind does nothing for anyone. Lupron has horrendous side effects and again, leaves the disease and all its adhesions behind. I went nearly 20 years without diagnosis and I am in medicine with a doctorate and access to medical care. Every day I work hard to educate people however I can that endometriosis is treatable. But it has to be treated right. If someone says to me that there are many ways to treat endometriosis, I always respond that there is one: excision. (and then hopefully pelvic pt). Endometriosis affects 1 in 10 women: that’s 176 million women worldwide. It is an international health crisis. In order for it to change, we must as a community of women demand the media teach people to stop perpetuating myths and nonsense that costs women the quality of life they deserve.
We know that it’s different for everyone…what are the highs and lows of having endometriosis for you?
During my second surgery adnexal torsion was discovered. As a result, I lost an ovary without informed consent. I was completely shocked when the doctor told me the ovary was removed as was my family. I am unmarried and the only girl in my family. When we arrived home as we pulled into the garage my father’s eyes filled with tears. Very softly he said that he had always wanted to be a grandpa. It isn’t just my hopes and dreams this disease has taken but it has stolen hopes and dreams from everyone around me.
Soon after I went into premature ovarian failure. In a desperate and very regrettable move, I endured an emergency egg freezing cycle. That cycle yielded not a single egg plus it caused my third surgery. Knowing that I am out of options for a biological child of my own is devastating. Even with specialized fertility counseling I still feel the sting of being motherless. I never imagined a life without a child, or a husband for that matter. You mourn, ever day in some way. You mourn for the child you could not have but most of all you mourn the loss of all those things that were supposed to be when you grew up.
It hasn’t all been bad. That vow I took to make sure no one else suffers the way that I did, I took very seriously. I truly believe it is time the women that have this disease speak up and speak out to change all of our futures. Each day, even if its just one woman I teach some one something that will help them live a healthy life with endometriosis. From diet to meditation there is always a way to unwind the mess endometriosis has caused. Excision may remove the disease from a woman’s body, but pain may remain. Pain may be from the pelvic floor or from chronic pain patterns and physical therapy is crucial to healing. (See this article for more information) My struggle with endometriosis allows patients to connect with me as a practitioner and surgeons understand that I not only know endometriosis inside and out, but I preach the wonders of pelvic physical therapy for ongoing post excision pain for a reason.
What do you see on the horizon for your practice?
In 2015 the Women’s Health Foundation, the largest women’s health foundation in the U.S. named me their Passion Award Winner for taking my journey to fight pain Below the Belt. Their award was a giant boxing glove which I proudly display in my New Jersey practice to remind myself that as broken as this road has been change can come one pelvis at a time.
Thanks so much, Dr Sarrel! We’re proud you’re out there in the community helping to improve lives. Happy Endo Awareness Month! Check back tomorrow to see our next story!