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How Excision Surgery Changed Jennifer's Decade-Long Endometriosis Journey
The information provided is not intended as medical advice; always consult a healthcare professional for medical concerns.
At just 12 years old, Jennifer began experiencing unusually heavy, painful periods that lasted longer than her friends. This marked the beginning of a decade-long struggle with endometriosis, a condition where tissue similar to the uterine lining grows outside the uterus.
"I just knew that something else was wrong because nobody, especially a teenager, should feel like that," Jennifer shares. "That's not normal."
Early Symptoms and Misdiagnosis
Initially, doctors misdiagnosed Jennifer with a functional gastrointestinal disorder and prescribed birth control pills at age 14 to manage her symptoms.
"I thought that the functional gastrointestinal thing was bull,” Jennifer recalls. Her skepticism towards the functional gastrointestinal issue stemmed from her previous experiences with misdiagnoses and ineffective treatments. She had been struggling with digestive problems for years, constantly seeking medical advice only to be met with inconclusive results.
"I was sick. I'd throw up before school"
Jennifer's early endometriosis symptoms included:
Heavy, painful periods lasting 5-6 days
Gastrointestinal issues, especially during menstruation
Nausea and vomiting
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The Long Road to Proper Diagnosis
For years, Jennifer cycled through different birth control methods, including pills and Depo-Provera injections. Despite being on continuous birth control, her symptoms persisted and even worsened. She experienced:
Severe nausea and vomiting
Chronic fatigue
"I was sick. I'd throw up before school," Jennifer remembers. "In school, I would be so sick that I would end up being checked out. I would throw up at school and all this time I wasn't having a period because I was on continuous birth control, but I was still having these symptoms."
Diagnostic Surgery
At 17, Jennifer underwent her first surgery - a diagnostic laparoscopy with ablation."That's when I was officially diagnosed,” says Jennifer.
The surgeon reported burning 80% of the endometriosis they found and told Jennifer she had stage 2 endometriosis. However, this ablation surgery, while providing a diagnosis, didn't offer long-term relief.
"I had that in September and by January 2020, my symptoms started coming back and I was still on birth control,” Jennifer says. "It didn't work for very long.”
The Turning Point: Education and Advocacy
A pivotal moment in her health journey came when Jennifer attended a screening of the documentary "Below the Belt" about endometriosis. There, she learned:
Hysterectomies do not cure endometriosis
Birth control is not an always effective treatment for the disease itself
Excision surgery by a specialist is the standard treatment
Jennifer describes this revelation: "It was in that documentary that I found out about the Center for Endometriosis Care in Georgia and that hysterectomies don't cure endometriosis.”
Endometriosis Excision Surgery
Armed with new knowledge, Jennifer sought out Dr. Jeff Arrington, an endometriosis excision specialist. In May 2023, she underwent endometriosis excision surgery. Unlike her previous ablation surgery, the recovery was more challenging but ultimately more effective.
"That's the difference between the ablation and the excision," explains Jennifer. "So an ablation is kind of like shaving. You're just shaving the hair. You're kind of like taking the top off, but it's going to grow back because you're not getting the root. But with excision, you're actually going in and that's like plucking and you're actually like going in and like cutting it out from the root."
Unlike her ablation surgery in which she went dancing afterward, her endometriosis excision surgery knocked Jennifer out. "I felt like I got hit by a train for five days," Jennifer says of her recovery. "It was really rough. I felt like my center was made of jello, like, because I just had no strength at all."
Jennifer says it took her about a month to get back to normal.
Life After Excision Surgery
Since her excision surgery in May 2023, Jennifer's quality of life has improved significantly. She's experienced a reduction in symptoms and has been able to manage her periods without relying on hormonal birth control. Perhaps most excitingly, Jennifer is now pregnant, eagerly awaiting the arrival of her first child.
"I'm pregnant right now. So that's pretty exciting." she shares. While pregnancy has been relatively smooth for her, Jennifer remains cautiously optimistic about her long-term prognosis. She understands that endometriosis is a chronic condition and plans to stay vigilant about any returning symptoms. For now, she's focusing on her upcoming motherhood journey and enjoying life with fewer endometriosis-related interruptions.
Jennifer's Advice for Other Endometriosis Patients
Jennifer offers valuable advice based on her personal experience with endometriosis. She emphasizes that endometriosis can affect anyone, regardless of family history. As she explains, "You can have it even if nobody else in your, nobody else in your family has it." This insight is particularly important for those who may doubt their symptoms due to a lack of genetic predisposition.
Endometriosis symptoms also present itself in a variety of ways. She states, "Endo is not a menstrual disease. It affects those organs, you know, but it's a whole body disease." She points out that symptoms can vary widely between individuals, and that the severity of symptoms doesn't necessarily correlate with the stage of the disease.
"You're not too young to have endo. You're not too old to have endo."
As she puts it, "Don't be discouraged if you hear other people and you're like, that sounds so much worse than me. Or, you can't have it because it's not bad for you. That's not true."
Perhaps most importantly, Jennifer encourages people to trust their instincts about their bodies. She advises, "You're not too young to have endo. You're not too old to have endo." She warns against dismissing symptoms based on age or other factors, stating, "Those easily dismissed things are so dangerous."
