The Endometriosis Foundation of America recently held their annual medical conference on endometriosis. If I had to sum up the messages from the three information-packed days of the conference, it would be that early diagnosis and intervention for endometriosis patients is extremely important, and we need continued research into ways we can accomplish this. Other interesting areas that were the subject of presentations included research into new treatment and diagnostic strategies, surgical considerations, and understanding pain mechanisms in endometriosis.
The highlight of the first day was the talk by Deborah Bush, co-founder and chief executive of Endometriosis New Zealand. She started out defining the scope of the endometriosis problem. Endometriosis affects one in ten women during the reproductive years, and even some men. Four percent of all women are affected, which amounts to approximately 176 million women worldwide. And yet we still don’t understand the causes of endometriosis, diagnosis is tricky, and there is not a lot of consensus about treatment guidelines. The best practice treatment guideline was published in 2013, through a global collaboration effort: “Consensus on current management of endometriosis.”
With respect to the diagnostic delay, some important considerations to keep in mind are “the time of the diagnostic delay represents a whole changed person. It affects confidence and self-esteem” and “it takes a strong person to keep searching for care after continuously being told it is all in your head.” I think everyone who works in the field of endometriosis can agree that it is imperative to work to reduce the diagnostic delay.
On the subject of treatment of endometriosis, Ms. Bush stated that “medical management does not treat endometriosis. It may help symptoms.” This refers to medication-oriented treatment strategies such as hormonal therapies, or painkillers/anti-inflammatory drugs. Good excision surgery is very important: one good laparoscopy is effective for excision of endometriosis. Also, it is important to avoid repeat laparoscopies with incomplete lesion removal, since this can lead to increased adhesion formation and increased pain.
Ms. Bush talked about the importance of a multi-disciplinary approach for treating endometriosis. You may need to treat issues with the bowel, bladder, muscles, and nerves, in addition to treating the endometriosis. Pelvic physical therapy can help, as well as changes in diet. Acupuncture, relaxation, osteopathy and yoga have all been shown to have some benefit in treating endometriosis pain and other symptoms. Magnesium, fish oil, and green tea may be helpful supplements. Also, “exercise is the best non-drug treatment for pain.”
Other presentations on the first day included an update on some current research studies on endometriosis. There are several important studies ongoing, but according to Dr. Stacey Missmer from Harvard Medical School, there needs to be increased funding and participation in endometriosis clinical trials. This is evident from the fact that there are only 221 clinical trials for endometriosis registered at clinicaltrails.gov, and despite a similar cost to the economy, there are 12, 336 clinical trials registered for diabetes.
The highlight of the second day was several presentations showcasing excision surgery for endometriosis. Several surgeons discussed excision of endometriosis from the ureters, bladder, ovaries, bowel, and robotic surgery. The important take home message from this part of the conference is that endometriosis can be safely and successfully laparoscopically excised from all of those areas, by surgeons with enough experience and training. Many gynecologists do not operate on ureters, bladder or the bowel, and since the importance of complete excision was stressed, when picking a surgeon, it is important to choose someone who is able to operate on all of these areas if needed.
The pros and cons of robotic surgery were hotly debated. Dr. John Dulemba put forth his arguments in favour of robotic surgery, stating that in his opinion and his own research studies, the ability to detect endometriosis was enhanced with the use of the robot. However, others argued that many robotic surgeons have insufficient training. Dr. Michael Nimaroff stated that we need more research and doctor training, adequate informed consent from patients, and disclosure of doctors’ experience levels with robotic surgery.
The emphasis on early diagnosis and intervention continued into the final day of the conference. Dr. Sawsan As-Sanie gave a presentation on pain mechanisms in endometriosis, and how pelvic pain can become chronic and more difficult to treat over time. “We have to treat early to prevent the transition from acute to chronic pain.”
In patients with chronic pain, where pain has been present almost daily for a period of six months or more, there is altered brain chemistry and function. This phenomenon is called central sensitization, and it has important implications on how to treat pain, since patients with central sensitization are less likely to respond to hormonal therapies and surgery. In addition, research has shown that chronic pain syndromes cluster: other pain syndromes are more common in patients with endometriosis and chronic pelvic pain. Earlier treatment of endometriosis might prevent these other chronic pain syndromes from developing.
Dr. As-Sanie’s suggested approach to treating patients with chronic pelvic pain is to begin with gold standard therapies for possible contributing factors (for example, excision surgery for endometriosis). If standard treatments fail, consider other diagnoses; for example, in patients with endometriosis, consider the possibility of interstitial cystitis, pelvic floor muscle dysfunction, adenomyosis or other pelvic pain contributors. If treatments for those diagnoses fail, then consider adding centrally-acting therapies such as Elavil or gabapentin. And finally, non-pharmacological therapies such as acupuncture and physical therapy can be helpful for treating chronic pain.
Dr. Linda Griffith presented research working towards stratifying endometriosis patients using molecular markers. This could eventually result in a better understanding of an individual patient’s prognosis and response to treatment. This approach has been successfully used to improve patient outcomes in certain types of cancer.
Overall, the presentations at this conference showed that although at the moment, diagnosis and treatment of endometriosis has not improved much in the last 30 years, there is a lot of promising research being conducted that should result in improvements in diagnosis and care of endometriosis patients in the future.
About the Author
Philippa Bridge-Cook, Ph.D, is a scientist trained in medical genetics and microbiology. Philippa has consulted for the biotech and pharmaceutical industries in the areas of functional genomics, proteomics, molecular diagnostics, pharmacogenetics, infectious diseases, and cancer. She has a strong interest in women’s health issues, in part due to her personal experiences as a patient with endometriosis, adenomyosis, and related complications. She is currently acting as the Executive Director of The Endometriosis Network Canada.