Former CIGC patient Maria had endometriosis for 20 years before she found relief from severe pain. Doctors dismissed her. OBGYNs misdiagnosed her. They told her the pain was all in her head.
In a Facebook Live event for March’s Endometriosis Awareness Month, Maria joined CIGC Director of Education and Community Outreach Nilofar Kazi to talk about her journey to find relief.
Watch the recording here:
When she first started having pelvic pain every month, Maria’s OBGYN assured her the pain was normal. But after 10 years of increasingly painful periods, Maria knew she had to do something. In her early 30s, her doctor suspected she may have endometriosis, so she underwent a minimally invasive ablation procedure.
Ablation involves the superficial burning of the top of endometriosis lesions in the pelvis. Unfortunately, this procedure often results in incomplete removal, leaving behind the root of each lesion and failing to fully resolve pain long-term. After the surgery, Maria’s doctor prescribed birth control pills in an effort to control her symptoms going forward. But after a while, the pain returned. And just over a year ago, her symptoms reached an all-time high.
And so began Maria’s cycle of being dismissed and cast off by what seemed like an endless ring of doctors — a mix of OBGYNs, general practitioners and GYN surgeons — who couldn’t help her find a solution. One doctor told Maria her case of endometriosis was the worst she’d ever seen. Another said he couldn’t guarantee he wouldn’t have to switch from a laparoscopic surgery to an open surgery. And yet another refused to do surgery during the COVID-19 pandemic and warned Maria it would be difficult not to rip her rectum during surgery, resulting in the need for a colostomy bag. She also didn’t understand why Maria was in so much pain from endometriosis; she had patients with malignant tumors who were in less pain. At different times, she was prescribed seven different medications. But nothing worked, and Maria’s pain was debilitating.
“I could barely get out of bed,” Maria said. “I was in bed about 80% of the day for three months.”
Maria is a freelance medical editor and the primary caregiver for her daughter, who has cerebral palsy. Her symptoms were so severe that she struggled to not only care for her daughter, but also to keep up with the active life she was used to living. In March 2020, right at the beginning of the COVID-19 pandemic, Maria knew she needed to take control of her health and find an endometriosis specialist.
Years of being dismissed and not listened to by multiple doctors had led to a long delay in diagnosis and treatment, a situation that is all too common for many women with endometriosis. In CIGC’s 2020 Women’s Health Survey, our researchers found an alarming delay in official diagnosis. Of women diagnosed with endometriosis, 64% reported that it took more than four years to get that diagnosis and 28% said their diagnosis took more than 10 years.
A delay that long can result in more severe symptoms and more complex cases of endometriosis over time. In Maria’s case, her endometriosis had progressed to stage 4. An evaluation by an endometriosis specialist can cut back on this common delay in diagnosis. Specialists are experts in both diagnosing and treating complex cases of the disease. At CIGC, our specialists perform DualPortGYN endometriosis excision, an advanced minimally invasive procedure used to both diagnose and cut out (excise) endometriosis lesions during the same surgery.
An endometriosis specialist is also more highly skilled in GYN surgical techniques than a typical OBGYN who splits focus between obstetrics and gynecology. In fact, a survey 1 from the American Congress of OBGYNs showed the main focus of most OBGYNs is obstetrics, with only 25% of their time spent on surgery. CIGC’s endometriosis specialists focus solely on laparoscopic GYN surgeries, helping women by relieving their pain and getting them back to their lives.
In the middle of the COVID-19 pandemic, Maria had a total hysterectomy with CIGC’s co-founder and GYN surgical specialist Dr. Paul MacKoul. A total hysterectomy involves the surgical removal of the uterus and cervix, and Maria opted to have her ovaries and fallopian tubes removed as well. Endometriosis is an estrogen-dependent condition, so removing the ovaries decreases estrogen production and helps control additional endometriosis growth.
Along with the hysterectomy procedure, Dr. MacKoul performed extensive endometriosis excision to remove all traces of lesions that had spread to other organs in her pelvis, including her rectum. With the DualPortGYN procedure, which uses a technique called retroperitoneal dissection, Dr. MacKoul was able to complete the thorough endometriosis excision Maria needed — without damaging her rectum, as her previous physician had warned was possible.
From her first consultation, Maria knew she was in the right place.
“Dr. MacKoul took my pain seriously from the first second,” Maria said. “He wanted to help me, and I felt like no one else wanted to or could.”
Dr. MacKoul was there for Maria through every step of the process, even answering her phone calls after hours to alleviate her fears about recovery. Today, Maria is pain-free and able to care for her daughter and go on runs with her dog, Archie. To read more about Maria’s recovery, visit our previous blog post.
When asked why she decided to tell her story, Maria’s answer was simple: “To give other women hope.”
“I thank God that CIGC was put in my life,” Maria said. “I’m so thankful to be able to share my story because you really believe when you hear from someone who lived it that they understand what you’re going through. There’s nothing like saying, ‘I know,’ and meaning it. This has been life-changing for me and I hope it is for others as well.”
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Did you miss our last Facebook Live event?
To clear up the misinformation, CIGC co-founder and GYN surgical specialist Dr. Natalya Danilyants joined CIGC Director of Education and Community Outreach Nilofar Kazi to debunk the most pervasive fibroid myths.
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