The doorknob on the closed door looked 100 feet away though I was only a few feet from it.
I was sweating, pushing down tears, doing a very poor job at masking my anger, in pain and frustrated. I wanted out of that room and still the “doctor” crammed more and more mistruths into that tiny little space.
I use quotations because I knew more about endometriosis than this self-proclaimed endometriosis expert.
“It’s time for you to realize that all women over 40 with endometriosis require a hysterectomy for endometriosis and that’s the way it is”
“Did she just say that,” I thought. Am I being punked because I am sitting in one of the most well known endometriosis offices in the US and the doctor usually treating me just stepped out for a minute.
She continued by telling me I was retrograding into my belly and that was my source of pain so taking the uterus stops all that. My face got redder, because that is biologically impossible and the days of Sampson as the driver of endometriosis and pain are long over, My escape route, that doorknob, looked even farther away.
“But I have nerve damage from the hernia. I don’t want to risk a loss of sexual sensation. I do not want a hysterectomy. It is not good for my pelvic floor”
“It’ll be enough,” she snipped at me.
It will be enough, I was discussing my ability to sense anything sexually for the rest of my life and that’s how the doctor chose to speak to me. My entire career is providing a safe space for people with pelvic pain and this was how my concerns were being treated. I was standing there with an MRI, in hand, showing the nerve compression, a miscellaneous blob of sorts on top a pelvic nerve that could have been causing the pain. Yet, all that was being offered to me was ripping out of my uterus. I wanted to fix the compression. I wanted to make the decision about my fertility and my uterus myself, something I was robbed of when I had an ovary just taken during one of my surgeries. This was my body, my choice and I understood, probably more than any other patient, what that pelvic nerve was plus what surgery could and could do for it. Maybe operating on the uterus was not a cure, maybe it was a non permanent “fix” but that is the choice I wanted to make and it is my choice.I wanted respect.
It took everything I had that day to reach for that doorknob. I had been horrendously ill for months begging for help from these specialists. Going through that door, I exited a ten- year medical relationship with the only person, I thought, ever believed my pain, the senior partner at that practice. In return for standing up for my own uterus, for knowing that a hysterectomy does not treat endometriosis, only adenomyosis a condition inside the walls of the uterus, I was thrown in the garbage by my medical team like I was a nothing that didn’t matter. Months of pain continued. I sought new health care providers, some believed me, some could not find the source of my pain but realized who I was and managed to treat me with respect nonetheless. Any time I sat in a chair or walked, something someone commuting, watching TV, or say working needs to do, my pubic bone, hip flexor, groin, and labia felt like they were ripping. My belly button started to leak white fluid, yet I planked every day because that is my job as a physical therapist. I bloated and I bloated and I bloated. Most of all I cried.
Bad enough I had the disease, but the depths of darkness that ensued from being minimized and medically ridiculed by people I trusted caused me nearly unbearable bouts of depression. My alarm rang every morning. I got up, put one foot in front of the other and let time roll over me until bedtime. Which wasn’t long since I got into bed around 3pm every day. I was waking up at 5am to workout to try to stop the bloating, which didn’t work in case you’re wondering. Fibroids, SIBO, endometriosis and adhesions are a perfect storm for weight gain. With the pain and loss of self, I spent a lot of time in bed. Crying and wondering why, I, who am one of the leading voices in endometriosis in the United States, maybe the world, was being treated like dirt on the street both by my insurance company and by an endometriosis specialist who treated me for 10 years. I spoke up for my own health, then I was left to clean up the pieces created when my trust in medicine shattered- left to clean up the destruction of minimization all while wading through my own health issues. Arduous is an understatement.
I wasn’t silent though. I threw down one of the best speeches I ever gave at an Endometriosis March in Boston. I managed to protest for better standards of care in Washington DC. Almost every single Nook specialist offered to help me and then, allowing myself to trust just a little, I finally let one of them. He went the extra mile to provide care including getting a specialized general surgeon fancy one day privileges in another state just to surgically manage that nerve compression.
5.5 hours of surgery happened this summer, crazy stuff went down with my belly button, more endometriosis was found. Three nights in the hospital and I needed a walker for two days to make it to the bathroom when I got home. During recovery, I walked and I walked and I walked trying to regain my strength. Then because it’s me, dragged myself to a medical conference where I lectured. Almost 6 months out, I am still pushing myself in physical therapy and with exercises trying to recover. Part of my abdominal wall is still numb because care was so delayed, a hard truth for someone so obsessive about tennis.
I am a well-educated, white, cis-gendered, upper middle class woman working in endometriosis and all of this happened to me. I really was told to have a hysterectomy, that my sexual satisfaction didn’t matter, that occult hernias don’t exist, and that no one was going to have a baby with me anyway so I should just be done with it. I also, despite open lines of communications to any professional endometriosis advocate, pelvic pain specialist or endometriosis surgeon I wanted and therapy with medication, found myself in one of the darkest places I have ever been because I knew I was ill and all the team I depended on wanted to do was to forget and diminish me.
If this happened to me, what chance does anyone else out there have?
I still wake up in the middle of the night hearing my chart slam against the desk of the doctor as she pushed that hysterectomy on me. I still hear my doctor of 10 years, tell me that if I don’t apologize, Ill have to just learn to live with my pain as if he was holding my health ransom. I still remember the soul defying, heart wrenching pain of knowing if I did not vote with my feet, no one was ever going to help me. Sickening, a part of me still misses the good times over the years of working together. Trust shattered is a hard thing to get over. The whole ordeal broke my heart, or at least tried to. Goliaths are very visible but my little voice matters.
Don't misinterpret what I am saying. Hysterectomy has a role in the treatment of some pelvic pain disorders. Adenomyosis being one of them. But it has to be the patient's choice, not something shoved onto them.
In those three nights in the hospital, in between tears and massive doses of pain meds, I decided I had enough. I had enough of doctors being allowed to speak to patients like they don’t matter, to minimize their concerns, to overbearingly and unilaterally make decisions for them, to utilize outdated, lousy research and pharma funded information to come for my organs instead of providing me actual care. I’m over it. I am over how hard it is to have endometriosis, four excisions in and I still have disease, I have chronic nerve issues. I struggle with fatigue. I am over people thinking it’s only about surgery, or medication, or physical therapy-it takes a multi-disciplinary approach. I am over people thinking only flash and celebrity matters in awareness instead of delivering people actual treatment choices and real research for this disease.
In those moments I was inspired to bring you all together and discuss what to do about endometriosis- patients and practitioners all together in one room, hearing each other.
I call to order the Endometriosis Summit: Patient and Practitioner Town Meeting. It’s my brainchild that no other woman should endure what the last year, or actually what the last 15 years, of my life has been. I have endured it all.
No woman, girl, or person should miss out on school, career, social participation or motherhood because of pain and painful periods.
Join me March 3, 2019 www.theendometriosissummit.com
Facebook:Sallie Sarrel, Physical Therapist: Endometriosis and Pelvic Pain Management
Instagram and Twitter: drsalliept