Endometriosis is a silent epidemic – affecting 178 million women worldwide. This incurable, painful disease takes an average ten years to diagnose. KFOR’s Emily Sutton shares her personal story of pain and triumph on her journey with endometriosis.
I never imagined on my wedding day, the journey of pain, frustration and infertility, my husband and I would walk over the next five years.
Endometriosis is the invisible, incurable disease that affects more than one in 10 women in their child-bearing years. Chances are, you know a woman who has it.
Dr. Katherine Smith at OU Health has dedicated her life to helping women with this disease. She explains how it works, saying, “Endometriosis is a condition where tissue that is like the lining of the uterus, but is different in many ways, lives outside of the uterus and causes inflammation, scarring, fibrosis, infertility and pain.”
Main symptoms include severe cramps, heavy periods, pelvic or abdominal pain during your period, lower back or leg pain, pain with sex, stomach problems like bloating or nausea, painful urination or bowel movements, infertility, fatigue or depression. Less common symptoms include breathing or shoulder pain.
Looking back, my journey with endometriosis began in high school when I had heavy periods. This continued in college where I was advised to get on birth control. This helped control my symptoms. So then when I got off, wanting to start a family, an odd side pain started – enough that it was crippling. I had to go to the Emergency Room one time because I was wondering, “What is wrong with me?” The ER doctor checked my gallbladder, liver, appendix, blood and couldn’t find anything. I left the hospital frustrated, with pain meds and unanswered questions.
The first red flag – if you ever go to the ER for your period, you should talk to your doctor about endometriosis.
Dr. Smith says this is all too common for women with endometriosis. “She ends up in the ER or her pediatrician’s office, or her family medicine office, and all of those doctors, while well-meaning, aren’t taught very much about endometriosis or are taught things that are outdated.” Lack of education is just one of the reasons why it takes an average of 10 years to diagnose and even longer for women of color. So why does it take so long? Endometriosis is often dismissed by doctors and family as “bad cramps.”
Recent studies show a genetic link – you are seven times more likely to have endo if your mom had it. The “it’s just a bad period” myth can perpetuate through generations without a diagnosis. Dr. Smith says, “Your period can be uncomfortable, especially when you’re first starting to have your period, but it shouldn’t be detrimental to your everyday life.”
Red flag number two – if you have to get up in the middle of the night to change your pad or consistently have to miss work or school on your period, you should talk to your doctor about endo.
Diagnosis is tricky because the symptoms don’t always correlate to the amount of disease. Dr. Smith says, “You could have just a little bit of endometriosis, just one spot of disease, and have terrible symptoms and period pain. Whereas, you could have an entire belly of endometriosis and your pain is controlled with birth control pills.” The only way to know for sure if you have endo is through surgery.
I consulted with a specialist, but since my pain was inconsistent, decided to hold off on surgery. Fast-forward to April 2019. I trained for months for the Oklahoma City Memorial Half-Marathon and, of course, my monthly pain had to happen this day! I had become accustomed to the stabbing side pain, wrapping under my right rib once a month, but I had never run a race with it. Normally, the end of the race is the hardest, but this time, the first half I struggled to run upright, plastering a fake smile on my face.
Dr. Smith empathizes with her patients’ pain. “I tell this to my patients a lot – pelvic pain is traumatic. Being in chronic pain is traumatic. Having people not believe that you’re in pain is traumatic….Being gaslit by people in your life and people in the medical community is traumatic.” She says this can lead to anxiety and depression and says mental health should be part of endometriosis care.
Several doctors dismissed my pain, insisting I likely pulled a muscle or that it was “too rare” to have endo under my ribs. A local fertility doctor sold me the myth that pregnancy will get rid of endometriosis symptoms. Desperately wanting to be a mother, I believed it. It turns out 40 to 50 percent of women with infertility have endometriosis. After two failed treatments, I demanded surgery.
The doctor confirmed I had endometriosis, stage three out of four. He burned off a few lesions, but I was shocked and frustrated when the pain returned only two months later. He gave me two options – another fertility treatment or drugs that would put me into menopause.
Red flag number three – if the doctor pushes a treatment, educate yourself, be your own advocate and seek a second, third or fourth opinion.
Online, I found the best information through fellow endo warriors who have been through the ringer. A different fertility specialist recommended Dr. Katherine A. Smith, the first and only MIGS (minimally invasive gynecologic surgeon)-fellowship trained OBGYN in the state of Oklahoma. Over the last twenty years, there have only been 400 graduates of this program. Finding a qualified surgeon is not an easy task as there is no standard for excellence with endo. I’m thankful that we have a skilled enough surgeon in the Metro to do this complicated surgery. Previously, I thought I had to go to Texas or endometriosis treatment centers in Atlanta or New York City. Many women travel across the country or even internationally to get the right kind of treatment because without it, it leads to multiple surgeries and the pain returning.
The best treatment is through excision – the surgeon digs out the lesions at the root instead of just burning them off. Dr. Smith explains how minimally invasive surgery works – “I put a telescope in someone’s belly button and put gas in the abdomen, that gives me room to work in the belly. Then I make little incisions about the size of my finger on the patient’s abdomen. Usually, two on one side and two on the other that allow me to put instruments in the abdomen and complete the surgery with these three-to-five-millimeter instruments.” This minimally invasive technique can be done with or without a robot. There’s less blood loss, lower risk of infection and patients often go home the same day.
November 13, 2020, I went to the brand-new OU Health Outpatient Surgery Center for my excision surgery. Due to COVID, my husband could not come with me. I was nervous going in, but the staff did a great job distracting me. I didn’t have to starve myself before the surgery with fasting. I was given a protein shake to have a few hours beforehand. The surgery took nearly four hours with a team of three surgeons. Dr. Smith said I was riddled with nearly 50 areas of disease. My liver was stuck up to the side of the abdominal wall. The team removed my fallopian tube and appendix, incredibly enough, through my bellybutton! A fluid-filled fallopian tube can halve your chance of in vitro fertilization. The best news of all? Four years later, the surgery team found the root of my side pain! Dr. Smith says, “That was actually kind of unique, that we found something that was pointedly right here (pointing), and we were able to take care of that and then your pain got better.”
I woke up groggy and drugged after the surgery. Pain meds prevented me from feeling any pain. The recovery wasn’t bad, I rested for 2 weeks. The monthly pain has not returned. This is something that I’m going to live with forever. Down the road, I may have to have a hysterectomy, but hopefully before then, I’ll have children. Michael and I celebrated five years this week, recovered, resilient and filled with hope about the possibility of starting our family.
If you have signs or symptoms of endometriosis, there is hope. Educate yourself, be your own advocate, ask questions, seek a second opinion and stop the stigma – talk about it with your friends, sisters and daughters.
There is hope. Dr. Smith says that new research could one day lead to blood work detection instead of surgery. OU Women’s Health will be hosting a live Zoom Q&A for Endometriosis Awareness Month on Monday, March 29 at 6:30 p.m. You can register at www.ouhealth.com/events-calendar/event-details/?Event=22890.