When Heather Guidone learned she had endometriosis in the 1980s, she had never heard of it.
“The doctor said, ‘Well, the good news is we have a diagnosis. The bad news is you’re probably not going to get better,’” Guidone, 53, recalls to TODAY.com. “He said, ‘Oh, by the way, you’re probably not going to have a child, and you should schedule a hysterectomy immediately.’”
At the time, she wasn’t yet 20 and didn’t want to have her uterus removed. She started searching for treatments and found a doctor who recommended ablation, a procedure that uses heat to burn the endometriosis, which occurs when tissue similar to the uterine lining grows in other places in the pelvis and body.
After the ablation, Guidone felt some relief, but then the pain returned. So, she had another ablation.
“Over the course of several years, it literally became ablation two, three, even four times a year,” she says. “I was in surgery all the time, and you can imagine the … toll that takes on your body.”
In addition to the severe, constant pelvic pain that Guidone experienced, endometriosis caused many other symptoms, such as chronic diarrhea, urinary problems, pain during intercourse and kidney pangs. She worried about leaving the house, concerned that a pain flare would double her over in agony or a bowel or bladder symptom would lead her to anxiously search for a bathroom.
“There’s just this constant sense of indignity that the disease imposes,” she says.
After 21 ablations, Guidone felt stuck in an endless cycle of frequent surgeries, followed by taking birth control to reduce some of the symptoms and ending up in pain again. It seemed like she’d never get better.
“I ran the gamut of every emotion — shame, frustration, rage,” she says.
When “the internet came around,” Guidone says she began researching endometriosis and learned about something called excision surgery, where a doctor cuts out the endometriosis tissue, also referred to as lesions, nodules or cysts. She scheduled an appointment with a doctor located thousands of miles away to undergo this procedure, which she paid for out of pocket.
“My excision was really what saved me — from the ability to get pregnant right after, which was a shocker, but also really being able to live disease-free, and that was 26 years ago,” she says. “As far as my endo is concerned, I have not had any pain since that time. It’s a long road. A lot of it feels like pushing the boulder uphill.”
A new documentary on PBS called “Below the Belt” calls attention to the differences in quality of life for patients who undergo excision versus ablation for endometriosis. And while many benefit more from excision, the procedure is still difficult to access, experts say.
Endometriosis affects 11% of women between 15 and 44, according to the U.S. Department of Health & Human Services, and takes an average of seven to 10 years to diagnose. Its "classic" symptom is periods so painful that they prevent people from going to school, work or social activities, Dr. Kristin Riley, chief of the division of minimally invasive gynecologic surgery at Penn State Hershey Medical Center, tells TODAY.com.
“For a lot of patients with endometriosis, their period pain is so severe that taking over-the-counter medicines is not enough, and it’s pretty debilitating,” she says. “That’s usually a red flag.”
But endometriosis can present in numerous ways, making it challenging to diagnose at times.
“Some people end up having pain all the time or pain with ovulation, with bowel movements, bladder pain, pain with intercourse,” Riley says. “Some patients with endometriosis don’t really have pain, but they have more issues with infertility. And then other patients find out they have endometriosis because they’re having surgery for some other reason.”
She adds that endometriosis often occurs alongside other illnesses, like irritable bowel syndrome or painful bladder syndrome. "That muddies the water a little bit for patients and also for clinicians."
Patients might see a urologist or gastroenterologist for the pain but not get better after treatment. In these cases, "the next step really should be to consider endometriosis,” Dr. Ken Sinervo, medical director of the Center for Endometriosis Care, who appears in “Below the Belt,” tells TODAY.com.
Endometriosis is usually diagnosed after other conditions are ruled out. While experts might suspect a patient has endometriosis from their medical history, only surgery provides a definitive diagnosis. There’s no blood test or noninvasive way to confirm it.
The best way to diagnose endometriosis is a laparoscopy, where a surgeon makes a small cut in the abdomen and inserts a tube with a camera on the end and looks for any endometriosis, Sinervo says.
But this procedure can be tricky for the average OB-GYN, as the appearance of endometriosis varies from patient to patient. It can be black, brown or even microscopic.
"If all you do is look at endometriosis every day ... you find some of these subtle areas," Riley explains. "If you’re only looking for endometriosis once in a while, you might not notice them."
It can also be difficult for doctors to tell the difference between an earlier, more superficial stage of endometriosis or a later, more invasive stage — an important distinction to make since they should be treated differently.
“It’s not always easy to distinguish between superficial versus deeper disease. Only if you begin to dissect it, then you realize that the nodule or lesion is deeper than you expect,” Dr. Ted Lee, director of minimally invasive gynecological surgery at Magee Women’s Hospital of UPMC, tells TODAY.com.
To make matters more confusing, it's not known whether early stage endometriosis progresses to a later stage.
“We don’t really know. We all think if you see it, you should remove it,” Riley says. “(But) do some people just have superficial disease? Or do some people always start out with really severe disease?”
Because of all these complexities around diagnosis, many endometriosis patients may never learn about the treatment that has the most potential to help them, let alone access it.
Ablation versus excision
There’s no cure for endometriosis, and there isn't a universal treatment. It varies based on the stage of the endometriosis and patient's goals.
“Treatment is really tailored to the specific patient,” Riley says. “Some patients really want to avoid surgery. Some patients are really worried about the side effects for medicines, and other patients want to try things like pelvic floor physical therapy.”
Surgical management is one way doctors treat endometriosis. Some doctors perform ablation — what Guidone underwent 21 times — where the endometriosis tissue is destroyed with heat. Others do excision, where the tissue is cut out surgically.
Riley wrote one of the three papers examining ablation versus excision for surgical management of endometriosis. In superficial endometriosis, where there are only a few lesions that aren't very deep, ablation and excision seem to be equally matched.
“Nobody’s been able to show a clear benefit for superficial disease for excision over ablation,” she says.
But experts say ablation may fall short with advanced stages of endometriosis, where deep lesions or cysts may even reach outside the pelvic cavity. For example, doctors may be hesitant to use such intense heat on tissue growing on important parts of the body, like the ureter or bowl, so these lesions may go untreated.
With ablation, "you get the tip of the iceberg. You don’t treat the iceberg itself," Lee says. Whereas with excision, it's easier to remove the endometriosis growing under the surface or on organs.
"The goal is to remove as much as possible of the visible disease, as well as the palpable disease, the nodules that may not be apparent but are deeper,” he adds.
Patients tend to report feeling better after excision, but, Lee notes, "there’s always potential for some disease left behind," and pelvic pain can have a lot of causes, in addition to endometriosis. For example, many endometriosis patients also have adenomyosis, where the tissue lining the uterus grows into the muscle of the uterus, which causes pain and heavy bleeding.
Regardless of endometriosis stage, experts discourage repeatedly using ablation.
“If you are a doctor who’s not trained in excision, then ... you can try to treat the patient with some form of (ablation),” Sinervo says. “If they have a recurrence of their pain, the next step should not be another ablation. It should really be referral to a specialist who can excise their disease.”
The American College of Obstetricians and Gynecologists (ACOG) recommends excision for endometriomas, cysts that occur in what’s thought of as more advanced disease, according to the National Library of Medicine.
The Endometriosis Foundation of America calls excision the “gold standard treatment,” and often patient groups encourage people to undergo it instead of ablation.
Challenges with access
It remains tough for people with endometriosis to get excision surgery because there are fewer doctors trained to do it than ablation. It takes an additional two to three years of training to be perform an excision, and afterward, you can spend years practicing and honing your skills.
“It’s hard to know how many doctors perform excision. I definitely feel that it’s a minority of gynecologists,” Sinervo says. “When you consider that there’s about 50,000 gynecologists out there, and you’re talking about maybe a few hundred who have (excision) skills, it’s woefully inadequate.”
What’s more, doctors normally receive the same amount of money through insurance whether they do ablation or excision, even though the latter might be a longer, more involved surgery.
“There’s a lot of disincentives for doctors to learn the (surgical) skills that are necessary — not just because of the time it takes to learn those abilities, but also just the disincentive financially,” Sinervo says. “There’s not a lot of reimbursement.”
However, interest in excision among young doctors might be increasing.
“Our fellowship (at Penn State) has consistently been the most competitive over the last several years of all the OB-GYN fellowships,” Riley says. “We have more applicants than spots right now. So that’s encouraging.”
What patients need to know
Over the years, so many people have asked Sinervo what they should look for in a surgeon to treat their endometriosis.
The Center for Endometriosis Care's website has a list of questions people should consider when searching for an expert to help them navigate their endometriosis. Some of the questions he recommends patients ask doctors include:
- Do they perform excision?
- Do they work with a team if there’s endometriosis on the bladder, ureter, bowel or diaphragm?
- Have they treated those areas before?
- Do they remove all disease?
- How many cases have they done?
- What percentage of cases need future operations?
- Will they be able to lessen your pain?
“The goal of surgery is to improve the quality of life and decrease the amount of pain that a patient is having,” Sinervo says. “To go from severe, crippling pain to mild or moderate pain, that’s considered a win.”
Life after excision
Like Guidone, I had stage 4 endometriosis, and like many others, I had a delayed diagnosis. One doctor told me being a vegetarian caused my severe cramps. Another said the heavy bleeding and pain that kept me on the floor of my shower, unable to do anything, was normal for me.
But a series of surgeries — two excisions for large endometriomas and a hysterectomy for adenomyosis — has vastly improved my life. While I still have pelvic pain and am in pelvic floor therapy, I'm forever grateful to a close OB-GYN friend who recommended a doctor who performs excisions. I'd asked my doctors about having endometriosis beforehand but never got a straight answer.
Six weeks after Guidone had her excision surgery, she became pregnant with her son. While she faced some pregnancy complications, including preeclampsia and hemorrhaging, her son is grown and healthy.
She's since started working for the Center for Endometriosis Care and has become an advocate for patients.
“I want people with endometriosis to know that people are out here who care. We’ve walked the journey. We know the journey, we’re living the journey with them right now,” she says. “We’re working really, really hard to try to make systemic changes.”