The diagnosis and treatment of diaphragmatic endometriosis (DE) is often delayed, due to lack of awareness by patients and healthcare professionals alike, according to an international patient survey.
The online survey in the European Journal of Obstetrics & Gynecology and Reproductive Health found that among respondents who initially consulted a primary care physician (PCP) for symptoms of DE, a gynecology referral occurred only after a median of 5 consultations.
Principal investigator Robert Sutcliffe, MD, a consultant in hepatobiliary and pancreatic surgery at University Hospitals Birmingham in the United Kingdom, has been treating patients with DE the past few years. “It struck me that a common theme among these patients was significant delay before both diagnosis and treatment, and a source of prolonged pain and suffering, often for several years,” he said.
It readily became apparent to Sutcliffe that there was inadequate awareness of DE in both primary care and gynecology. “Thus I set out to evaluate the issue, in an attempt to raise awareness of DE,” he said.
The anonymous survey was sent to members of endometriosis patient associations in 14 countries and posted on the “Extra Pelvic Not Rare” Facebook page, which is an online support group and patient education resource for those with endometriosis. Participants, who needed to have been diagnosed with DE, filled out the survey between November 20, 2020, and January 2, 2021.
Data was gleaned from 136 respondents (median age 34 years), of whom 98% were from Europe, North America, or Oceania.
The most frequently reported symptoms of DE were moderate-to-severe pain in the upper abdomen (68%), chest (64%) and shoulder (54%).
Pain was right-sided in 54% of respondents, left-sided in 11%, and bilateral in 35%.
Of the 122 respondents who initially consulted a PCP, a gynecology referral transpired after a median of 5 consultations. The respondents had reported a range of consultations from 1 to 100.
Furthermore, the median time between first primary care consultation and diagnosis of DE was 2 years, with a range from 0 to 23 years.
Additionally, 31% of respondents were diagnosed more than 1 year after their first gynecology consultation, with a range of 1 to 13 years, whereas 30% of respondents required 2 or more laparoscopies before diagnosis.
“One of the interesting findings of the survey was that DE symptoms often preceded the diagnosis of pelvic endometriosis, which exacerbates the difficulty in considering the diagnosis,” Sutcliffe told Contemporary OB/GYN. “Also, nearly a third of patients were diagnosed with DE more than 1 year after their first gynecologic consultation, suggesting that there is a lack of awareness even amongst specialists.”
A total of 116 respondents underwent surgical treatment, either primarily excision (n = 62) or ablation (n = 39).
Postoperative data was available for 113 respondents, of whom 65% reported either significant improvement or complete resolution of DE symptoms.
There was no significant difference in age (P = 0.19), timing of diagnosis (P = 0.59) or type of procedure (P = 0.13) between respondents who did and did not experience symptomatic relief after surgery.
Overall, 61% of respondents reported long-lasting symptomatic relief after a median of 1 year, while 39% of respondents reported persistent moderate-severe pain or underwent further surgery for recurrent symptoms.
The diagnosis of DE requires a high index of suspicion and involvement of surgeons trained in laparoscopic liver mobilization, according to Sutcliffe, who noted that international collaborative studies are needed to determine the long-term outcomes of the condition.
“The next step is to understand the prevalence of DE, which may be undiagnosed in a significant proportion of patients with endometriosis,” Sutcliffe said.
Sutcliffe reports no relevant financial disclosures.
Piccus R, Mann C, Sutcliffe R. Diagnosis and treatment of diaphragmatic endometriosis: results of an international patient survey. Eur J Obstet Gynecol Reprod Biol. Published online March 10, 2021. doi:10.1016/j.ejogrb.2021.03.003