By: Morgan Conner
In October I had the pleasure of attending the International Pelvic Pain Society’s Scientific Meeting with a number of my colleagues here at PHRC. On the second day of the main conference, Catherine Allaire MDCM, FRCSC gave the James E. Carter keynote lecture titled Endometriosis: Towards Prevention of Chronic Pain. There were two primary themes to Dr. Allaire’s lecture. The first was a review of the current understanding of and evidenced-based integrated approach to endometriosis related chronic pelvic pain (CPP). The second half was a discussion on the importance of how early recognition of endometriosis can help prevent CPP and the various strategies that may be successful in doing so. If you are unfamiliar with endometriosis here are a few blogs about it here, here, here, or here.
In looking at the current understanding of endometriosis related CPP, Dr. Allaire started with an overview of endometriosis facts and figures. The most disappointing to me was the 8-10 YEAR delay between onset of symptoms and diagnosis. Additionally, endometriosis has a prevalence of one in ten and is often associated with decreased social and economic participation, comorbidities, and progression to chronic pain. Three common symptoms of endometriosis are dysmenorrhea, pelvic pain, and dyspareunia, with 90% of patients reporting dysmenorrhea. This is important because it is also the cardinal symptom.
Endometriosis-related pain can be nociceptive, inflammatory or neuropathic. With CCP it is often neuropathic in nature. At this point, it would be irresponsible to talk about chronic pain without also talking about central sensitization (when the central nervous system becomes oversensitized leading to normal stimuli being labeled as dangerous/painful). Dr. Allaire summarized a study by Grundstrom et al that investigated the relationship between pain thresholds, chronic pain and endometriosis.
She highlighted the following:
1) There were reduced pain thresholds in women with CPP and suspected endometriosis
2) Presence of endometriosis did not matter with regards to CPP and reduced pain threshold
3) Duration of pain was most predictive of low pain threshold
She also highlighted the reduction in grey matter volume in the regions of the brain that are important in anti-nociception (simply, the area of your brain that says, “I feel that sensation but it’s not bad enough to ring the pain alarm bell, so we’re cool here!”). To recap so far: there is an 8-10 year delay in diagnosis when patients are experiencing repeated monthly pain, and during this time, their pain thresholds are reducing and their brains are not properly regulating pain signals. Additionally, cross-sensitization of nerves that supply different structures such as bladder, bowel or musculoskeletal system can lead to problems in these systems on top of the endometriosis. Sounds likes a pile-o-fun right?!?
To conclude the first half of her lecture Dr. Allaire described how endometriosis is a diagnosis that is best managed when there are multiple different disciplines involved. Often this takes the form of a “multidisciplinary approach” where the patient sees one practictioner who then refers out to other disciplines and care is provided simultaneously but not integratively. A better approach is one that is “interdisciplinary” where different disciplines are working together, preferably in the same location and even sharing one central chart.
The center that Dr. Allaire works at is just that. She described their program for patients with central sensitization whose pain has not been or is not being managed well by their primary care team. It is a short intensive program where patients see physical therapists, counselors, nurse case management, and gynecologists and at the end leave with a clear diagnosis and treatment plan that can be managed by their regular care team. You can read more about the program on their website: www.womenspelvicpainendo.com.
In the second half of Dr. Allaire’s lecture, she spoke about how to prevent the development of chronic pain due to endometriosis. The adequate management of endometriosis is critical to preventing the negative impacts of chronic pain on all aspects of quality of one’s life. Unfortunately, this is not happening (remember that 8-10 year delay in diagnosis??). Some of the factors that lead to this delay include the taboos, misinformation and stigma around menstruation such as the normalization of women’s pain (“periods just hurt, get over it and go take some advil!”, no wrong answer, try again). There is also inadequate training of primary care providers to recognise that early signs of endometriosis, in fact 63% of endometriosis patients were told by their PCP that there was nothing wrong! Both of these problems can be improved with proper education. Encouragingly there are education programs for school aged children of all genders about endometriosis popping up in various places like Australia, New Zealand, and New York State. Other steps Dr. Allaire presented to help prevent endometriosis related CPP are to suppress painful menses early and effectively and recognise patients at risk for centralized pain and treat any comorbidities.
Endometriosis was discussed in multiple lectures at IPPS this year and I think that Dr. Allaire’s lecture provided a great overview of how we can put all this knowledge into providing better care for these patients to both treat and prevent endometriosis-related chronic pain. As a physical therapist, this lecture highlighted for me that often patients with endometriosis and chronic pain that I see have likely been dealing with this for years, if not decades. Their treatment journey probably hasn’t been smooth. As physical therapists we are educated about chronic pain and its mechanisms and we often have a lot more time with our patients than a physician which puts us in an almost perfect place to educate patients on the mechanisms behind chronic pain which can in itself help reduce pain.1 I often spend most of the time during sessions talking with my patients as I work. These conversations serve multiple purposes and cover a range of topics, from helping patients feel more relaxed and comfortable in an uncomfortable situation, to distraction from pain (sometimes unwinding years of pain is itself painful and talking about how cute/ridiculous/weird your cats are can help take your mind off of it!), to educating patients about why I am doing what I am doing or about what I think has lead them to be on my table that day. Chronic pain education is often part of these conversations although I think that adding in these pearls that relate to endometriosis specifically for our patients that struggle with it can help give them a better picture of how their bodies are working.
I would like to thank Dr. Catherine Allaire for a wonderful and informative lecture and to IPPS for an educational conference. If you are experiencing endometriosis related pelvic pain, we are here to help. You can all any of our offices and schedule an evaluation with any one of our pelvic floor physical therapists!
PHRC’s YouTube Webinar, Pelvic Pain Explained: Endometriosis
PHRC’s Endometriosis Resource Blog
Pelvic Pain Explained by PHRC cofounders Steph and Liz