Costs & Coping

Costs mount with missed diagnosis, infertility

Costs mount with missed diagnosis, infertility

From pricey procedures to lost livelihoods, the financial cost of endometriosis is high but the emotional and physical toll that the condition takes on women may be even greater.


Shortly after they got married in 2007, Mary and her husband began trying to have a baby. The couple couldn’t wait to become parents and in anticipation of their growing family, they moved from a bustling city to a Maryland suburb with a highly-rated school district.


Perspectives on Endometriosis Management

Mary asked that her full name not be used in this article to protect her privacy.

After months of failing to conceive naturally, Mary, who was 33 years old at the time, consulted a fertility specialist and proceeded with intrauterine insemination. Her resulting pregnancy ended in a miscarriage at 11 weeks.

Devastated, Mary and her husband tried again, opting for in vitro fertilization (IVF) as her doctors suggested. But a series of fresh, frozen, and natural IVF cycles all failed, along with two more IVF cycles at a top fertility center 1,000 miles away. Another IVF attempt, this time with donor eggs, also ended without success.

“My husband and I desperately wanted to have a baby,” Mary said. “The time was ticking away. I felt guilty that my husband was having to suffer through this and it was my fault. I felt ashamed. Why can’t I have a baby like a normal person?”

It wasn’t until 6 years later, after spending $100,000 on fertility treatments, undergoing countless procedures, and suffering multiple miscarriages, that a test uncovered the likely cause of Mary’s infertility – endometriosis.

In 2013, she underwent a diagnostic laparoscopy during which a large endometrioma was removed from her ovary. Six weeks later, Mary and her husband received the news they had waited years to hear. An IVF cycle with donor eggs had proved successful, and Mary was pregnant – with twins.

“In the end, I have my two children, thank God,” Mary said. “But if I could go back in time, if I could do the laparoscopy at the very beginning, I may have been able to have kids with my own eggs. It would have saved a lot of time. Every time I did an embryo transfer prior to that surgery, it wasn’t going to work. All the money we spent up until that point was wasted.”

Delayed diagnosis

Mary’s story and the out-of-pocket costs she incurred throughout her journey are common for endometriosis patients, said Bruce Lessey, MD, PhD, a researcher and chair of the American Society for Reproductive Medicine’s Endometriosis Special Interest Group. Dr. Lessey performed Mary’s laparoscopy.

“I get calls all the time from women who have similar stories,” he said. “The patients vary of course, but many have come in with exasperating stories of delayed diagnosis. The disease is a terrible one in that it affects women in so many ways and sends patients in all different directions trying to find solutions.”

Endometriosis affects an estimated 176 million women worldwide, according to the World Endometriosis Research Foundation (WERF). About 5 million U.S. women have the condition. However, a significant number of women have undiagnosed endometriosis, research shows.

Bruce Lessey, MD, PhD

In the United States, it takes an average of 10 years from symptom onset to receive an accurate diagnosis of endometriosis, according to the Endometriosis Foundation of America. And that delay means that the financial and physical burdens of endometriosis frequently last for years before the right treatment is determined and symptoms are alleviated.

“Because of an overall lack of common knowledge about endometriosis, many women don’t know that their painful symptoms are due to a disease,” said Lone Hummelshoj, WERF chief executive and secretary general of the World Endometriosis Society. “This means they typically take a couple of years before they seek help and lack of acceptance [and] knowledge among first-line practitioners results in an additional delay before they are referred for treatment/diagnosis.”

The financial burden
A 2012 cost study conducted by WERF found that the average cost of endometriosis is 9,579 euros (about $10,000) per woman, per year, worldwide, primarily due to lost work productivity and direct health care costs. The cost of inability to work due to symptoms – $6,571 – was twice that of the direct health costs – $3,248 (Hum Reprod. 2012;27[5]:1292-9. doi: 10.1093/humrep/des073).

Lone Hummelshoj

Of the 10 countries analyzed, the estimated annual cost of endometriosis (based on an estimated prevalence of 7% among reproductive aged women) was highest in the United States at approximately $52 billion, followed by $13 billion in Germany, and $10 billion in the United Kingdom.

“To the best of our knowledge, the economic burden of endometriosis is similar to diabetes, Crohn’s disease, and rheumatoid arthritis,” Ms. Hummelshoj said. “Ironically, it is the loss of productivity due to delayed diagnosis and ineffective treatment that is the driver of that cost rather than the treatments themselves. And the more severe the pain is, the higher the cost to society.”

Costly procedures, lost livelihood
Patients with endometriosis regularly face a revolving door of physician appointments, tests, and medical procedures. Surgeries account for the brunt of financial expenses related to the disease, followed by monitoring tests, hospitalizations, and doctor visits, according to the WERF cost study.

“Like any other chronic disease, this is something that requires surgery, medication, physical therapy, and ongoing surveillance,” said Francisco J. Garcini MD, PhD, a gynecologist and minimally invasive gynecologic surgeon based in New Lenox, Ill.

“This is something that really doesn’t go away entirely, even when surgery is done properly. There can always be residual signs and symptoms.”

Direct and indirect costs were significantly higher for endometriosis patients who underwent surgery, particularly oophorectomy, according to an analysis presented at the American Society for Reproductive Medicine meeting in October 2016 by investigators supported by the drug company AbbVie.

Total health care costs for endometriosis patients who underwent an oophorectomy were $23,813, followed by $21,031 for laparotomy, $19,854 for hysterectomy, and $17,133 in total health costs for patients having laparoscopy, according to the findings [Fertil Steril. 2016 Sep; 106[3]:Suppl. e93. doi: 10.1016/j.fertnstert.2016.07.272].

But doctors stress that most studies don’t account for the costs connected to incorrect diagnosis or for the time and money spent on associated conditions. For instance, Dr. Lessey regularly encounters women experiencing nausea or diarrhea during their menstrual cycle who have been diagnosed with irritable bowel syndrome (IBS).

“While all IBS is not endometriosis, most menstrual cycle–related IBS is, in my opinion, endometriosis until proven otherwise,” said Dr. Lessey, who practices in Greenville, S.C. “The nausea or diarrhea associated with menstrual bleeding is fre-quently associated with the finding of endometriosis on the posterior cul-de-sac in our center and simply reflects the irritation and inflammation that occurs at menses, now localized to or near the rectum.”

Nancy Petersen, RN

In the meantime, bills are growing for medications and treatments targeted to IBS or other endometriosis-associated conditions such as interstitial cystitis, chronic fatigue, chronic pelvic pain, and infertility.
Mary, for instance, spent thousands of dollars traveling to fertility centers across the country. Each natural IVF cycle cost about $5,000, while each fresh or frozen cycle cost about $20,000, she said. Her donor egg IVF cycle totaled $50,000.

“There was a tiny bit of insurance coverage, which we quickly maxed out,” Mary said. “The rest was out of pocket.”

Paying a painful price
From the time she was 10-years-old, Nancy Petersen, RN, experienced repeated episodes of ruptured cysts and severely painful periods. At age 27, doctors diagnosed her with endometriosis and recommended a full hysterectomy and ovary re-moval to alleviate her pain. Surgeons later performed a laminectomy and fusion of Ms. Peterson’s lower back.

For the next 2 decades, the pain persisted, affecting her sleep and interfering with her work, said Ms. Petersen, a retired nurse and a senior adviser to the Endometriosis Research Center.

“I was a nursing supervisor walking 3 miles a day in a large medical center,” she recalled. “Every step was very painful and the fatigue overwhelming. It was hard to keep my career on track with that kind of pain, and it was also a factor in the breaking up of my engagement.”

While the financial burden of endometriosis can be calculated, the physical costs of the disease are immeasurable. Fatigue, painful intercourse, cramping, and painful urination and bowel movements are common elements.

As the disease spreads, patients can also develop ovarian cysts and dysfunction of the ovaries and other organs, added Farr Nezhat, MD, a New York–based gynecologic oncologist and surgeon. In some cases, cancer develops.
“Some patients have an ovarian cyst and [prior doctors] ignore them and think they cannot be malignant,” he said. “By the time they come to us, unfortunately, the cancer has spread.”

Chronic pelvic pain is another common effect, Dr. Garcini said. The vicious cycle starts with poorly treated endometriosis that generates lingering pain, which in turn, triggers pelvic floor dysfunction.

“A lot of patients with endometriosis, if it’s a chronic issue, end up requiring some sort of pelvic floor physical therapy to help them overcome some of the adverse effects of the chronic pelvic pain that initially started with the endometriosis, but then developed into other issues,” Dr. Garcini said.

In Ms. Petersen’s case, she eventually underwent an excision in which endometriosis was found on her pelvic sidewalls and on the uterosacral ligaments behind her pelvic lining, she said. Today, she is pain free and a national advocate for better endometriosis treatment.

“Medical suppression, pregnancy, total hysterectomies with removal of ovaries do not treat endometriosis,” she said. “The costs are enormous, and insurance companies miss the [boat] covering all of the ineffective treatments while failing to recognize that excision is and should be the gold standard when it comes to effective treatment.”

Fighting stigma
A lack of understanding about endometriosis among family, friends, and the general public leads many women to suffer in silence.

“Women [and] girls may be led to believe from societal norms, their mothers, etc., that pain is normal; that they have to ‘suck it up,’ Ms. Hummelshoj said. “And because these pelvic symptoms can be really difficult to talk about during adolescence, which is a difficult time to begin with, they may not discuss what they perceive as ‘normal’ with their girlfriends, believing that perhaps it is just them [who] are unable to cope with the pain.”

Dismissive attitudes spill over to primary care clinicians who fail to notice red flags of the disease when women present with pelvic pain, Ms. Hummelshoj said.

A 2011 study showed that diagnostic delay for endometriosis was longer in women who presented with more pelvic symptoms such as menstrual pain, chronic pelvic pain, and painful intercourse, despite their being the very indicators of the disease – [Fertil Steril. 2011 Aug;96[2]:366-73.e8.]

Ms. Petersen remembers the disbelieving looks and comments she received when she complained about pain following her hysterectomy and ovary removal.

“The psychological dismissal by caregivers, family, and friends is devastating,” she said.
“Couple the dismissal with ineffective treatments and you have a perfect storm of darkness around what women need to restore the quality of their lives, their sex lives, their careers, [and] their social lives with family and friends. Most simply withdraw because those around them do not believe they can be living with pain on a par with appendicitis.”

The emotional costs of failing to get pregnant because of endometriosis also are incalculable. Mary struggled with shame, depression, and an overriding sense of helplessness as her infertility continued. Now a mom to twin boys, she is overjoyed to be a mother, but says her endometriosis journey left a lasting mark.

“It definitely was worth it,” she said. “But I wonder if it could have been less costly and painful. I definitely have my scars from this. I will never be the same again.”

Alicia Gallegos is a writer for Ob.Gyn. News