Today we’d like to introduce you to Sallie Sarrel.
Hi Sallie, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstories.
After 23 years of seeking help for pain and painful periods, I was finally diagnosed with endometriosis. 23 years and I’m in medicine with an entire family in medicine. I had pain, not just painful periods but horrible back and leg pain. I thought debilitating menstrual cramps and heavy bleeding was normal my whole life. By the time I was diagnosed, I was so fatigued I could barely care for myself; I experienced bloating so bad that I had two sets of wardrobes, and I could barely walk let alone work as a physical therapist or play tennis. I saw 14 doctors the year I was diagnosed, and I had sought answers for my issues for years. Some said that I was depressed or the pain was in my head. Others told me it was normal for women to have back pain or that I had pain because I was overweight. I was gaslit and fat-shamed by most doctors I saw. I was only diagnosed because I found a surgeon that did excision of endometriosis on the internet and paid for the surgery out of pocket. Insurance refused my claim because treating endometriosis isn’t a necessity. My first surgery was six hours long and included a bowel resection to prevent me from an obstruction. How could all this be deemed medically unnecessary. After I was diagnosed, I decided that if I could experience all of this and I had access to anything and everything I thought I needed, then I had to do something to make sure everyone else could get the care they needed. I went on to develop a physical therapy practice specifically for people with endometriosis. I experienced surgical complications and required more surgery. One of my biggest complications was removing my ovary instead of treating my hernia. Hernias are common in people with pelvic pain and commonly missed. Unfortunately, removing the ovary didn’t treat the source of my pain and it rendered me infertile, despite rounds of IVF. Instead of just treating people with endometriosis and teaching about the multiple drivers of pelvic pain around the world, I wanted to provide people with a place to change endometriosis for themselves and for everyone. I partnered with Dr. Andrea Vidali in 2019 to found The Endometriosis Summit. We are a patient and practitioner educational entity. We give voice to those that want to drive endometriosis forward, dispelling the myths and misinformation that tend to dominate the endometriosis community. Five years later we are still going strong. Hosting a live conference in March, this year’s is March 24-26 in Celebration, Florida. We weathered the pandemic by introducing a webinar series and a virtual conference. We still do both because we realized people need endometriosis education wherever they are. We also have a podcast, YouTube Channel and are working towards creating a legislative initiative. No one should miss out on school, career, social participation, or parenthood because of pain and painful periods.
Would you say it’s been a smooth road, and if not, what are some of the biggest challenges you’ve faced along the way?
It has been a horrible road. Endometriosis took the ability to have a family away from me. I said goodbye to my mother knowing there are no more women in the line after me. I endured 9 surgeries, the worst two being surgeries to clean up the mistakes of previous surgeries. I entered menopause early so I was a 38-year-old with all the menopause issues, and I have nerve damage in my legs. But it’s the trauma left over from the disease that affects me the most. I asked for help from doctors for years but was never believed or I was fat-shamed (and I’m not even that heavy). I was blamed for my pain by most medical professionals. My career path was different because there were opportunities I couldn’t take because I was too sick or too tired. Financially, I have had to manage all my own care because the standard of care set by ACOG is so far behind few insurances cover excision surgery or the other care I have needed. I struggled in relationships because endometriosis can make you feel like the freak in the room- the one who needs special food or to go home because you are tired or not feeling well, not to mention endometriosis causes pain during intimacy and it’s hard to date with all that going on. I wasn’t able to have children and children provide a social connection to the community I never was able to have. My life is irrevocably different from endometriosis. Had I been diagnosed and offered excision, which is the complete removal of the disease while leaving the reproductive organs, I could have had a much different life.
Appreciate you sharing that. What else should we know about what you do?
By training, I am a pelvic physical therapist, but I truly specialize in changing the world one pelvis at a time through education. I want people to know about and understand endometriosis. I want people to feel connected to others with endometriosis and not suffer in darkness. No one should be ashamed of their disease; nothing that happened was their fault. Doctors need to understand the difference pelvic physical therapy and quality surgery and diagnosis all of the other generators of pain can make in someone’s life. We need to do better for those with endometriosis. The Endometriosis Summit puts patients and practitioners on even footing to drive endometriosis forward.
What quality or characteristic do you feel is most important to your success?
Like it or not, I have no filter. I’m done being quiet when it comes to pelvic health (and I guess most other things). We have to remove the shame from discussing our pain and push society to listen to us so that 200 million people worldwide are not aimlessly suffering without any answers. Being quiet is not going to work for endometriosis.
Pricing:
- Endo Summit Tickets All 3 days:$260
- Other Days tickets range from $65-160
Contact Info:
- Website: www.theendometriosissummit.com
- Instagram: https://www.instagram.com/endometriosissummit/
- Facebook: https://www.facebook.com/endometriosissummit
- Youtube: https://www.youtube.com/channel/UCebK2eqSmpgz19yvH44R8IQ
- Other: https://www.tiktok.com/@endometriosis_summit
