Renowned endometriosis specialist Dr Viju Thomas performed what he and his team believe is the first documented diaphragmatic endometriosis excision in South Africa in December 2023 at Mediclinic Constantiaberg. He explains the condition and the procedure. 

Endometriosis is common, yet underdiagnosed

Endometriosis affects roughly one in 10 women globally. The condition occurs when the cells that normally line the inside of the uterus (endometrial cells) are found in other parts of the body, resulting in significant pain. But despite its prevalence, endometriosis remains poorly diagnosed and managed. In fact, studies reveal a 10- to 15-year delay between presentation and diagnosis, says Dr Thomas, founder of the Minimal Access Gynaecological Surgery Unit (MAGS) and The Thomas Center for Endometriosis and Endoscopy, which brings together local and international leaders in the field.

Understanding diaphragmatic endometriosis

When endometrial cells grow in areas around your uterus, or in pelvic organs like your ovaries, fallopian tubes or abdomen, this is known as endometriosis – although endometrial cells can also be found in other parts of the body. In extremely rare cases, the endometrial cells or lesions grow on your diaphragm, the organ that regulates breathing. This is known as diaphragmatic endometriosis, which causes symptoms like chest, shoulder, and neck pain, as well as stiffness and breathing difficulties that often worsen before or during menstruation.

The patient on whom Dr Thomas and his team operated had been suffering with upper abdominal pain on her right side for 10 to 12 years, he says. A mother of three small children, she had such bad pain that she was unable to raise her right arm.

“Her quality of life was severely compromised; her daily function was less than three out of 10. She'd been to numerous specialists, from cardiologists to pulmonologists, and no one could explain her pain. Eventually, she found a gynaecologist who did a laparoscope indicating diaphragmatic endometriosis.”

As surgery in such cases had not been done in South Africa before, the patient, who lives in Bloemfontein, travelled to Cape Town to see Dr Thomas. Here she underwent an MRI which indicated an endometriotic lesion growing on her diaphragm.

“In the 14 years I’ve been doing this, I’ve seen fewer than five cases of diaphragmatic endometriosis and hers is the only one that required surgery,” Dr Thomas explains. “The others have been treated medically.”

In most cases, the condition can be treated with anti-inflammatories if mild and with progesterone and other hormonal drugs if symptoms are more severe. But not all women respond to medication and still experience severe symptoms, as was the case with Dr Thomas’s patient. “Her symptoms persisted past the maximum threshold of medication available, so the only other option became surgery.”

Performing the diaphragmatic endometriosis excision

In addition to the patient having endometriotic lesions around her diaphragm, lesions were detected beneath her heart, says Dr Thomas. He performed the diaphragmatic endometriosis excision together with general surgeon Dr Mark Hampton in December 2023. “We resected [cut out] the endometriotic lesion around the diaphragm,” Dr Thomas explains. This was done laparoscopically, minimising incisions, blood loss, and the need for pain medication.

“The laparoscopic approach allows for a very quick recovery compared to the standard open laparotomy,” Dr Thomas explains. “The latter requires a big cut of at least 15-20cm to reach the diaphragm, which is beneath the ribs, as opposed to the 3-5cm incisions required during laparoscopic surgery.” It hugely minimises pain and blood loss, simplifying postoperative care.

“Recovery from a laparotomy would be at least six weeks. The complication rate from such wounds is higher, with a higher risk of infection. Laparoscopy has much lower risks and offers other advantages, including magnification and the use of precise, small instruments ideal for delicate procedures. When you're dealing with the diaphragm, nerves or the heart, it’s very careful, fine work.”

Laparoscopy is thus the gold standard for this treatment. Having completed laparoscopic training overseas, Dr Thomas remains the go-to specialist for such cases.

Hope for diaphragmatic endometriosis patients

“The day after surgery, the patient had an immediate response – all the pain that was radiating through her arm and chest was gone,” Dr Thomas says. “She had normal postoperative pain.” The patient had an excellent recovery and was discharged two days after surgery. Shortly afterwards she travelled back to Bloemfontein by car, by which time she was very comfortable. “To this day she remains symptom-free, and she’ll likely remain that way,” he says. “She’s functioning at 100%.”

Dr Thomas says it’s important to raise awareness of diaphragmatic endometriosis. “Any woman could be walking out there with unexplained chest pain,” he says. “The fact that this patient was female, and that her chest pain was cyclical, arriving around the time of her period, suggested that this could be gynaecological. While diaphragmatic endometriosis is atypical, we know this condition is diagnosable and, when treated in the right hands, excellent results are possible.”