I’ve worked clinically for years with women suffering with chronic pain, sometimes pelvic, sometimes not - I’m so glad that Carine pointed pain out explicitly for the project. The cycle of mind and body chasing each other (or as you have phrased it, body-mind-body) is difficult as a clinician to capture and stop the cycle. But at the very least it’s important to recognize that pain triggers the stress cascade which exacerbates the pain - women go for decades without recognition of this stress due to pain.
Instead when stress does get acknowledgment, the framing is “If it’s stress, it’s on you, it’s in your head” which we know isn’t the case.
Aside from women rarely being asked about non-fertility based symptoms, a major issue with the commonly practiced care model, is a fracturing of concerns. Pain is addressed through a body only approach, when it doesn’t live solely in muscles, tendons, nerves. Stress is addressed in through a mental/emotional approach, when it clearly doesn’t live only in the brain. Women who are suffering can see this fractured approach from a mile away, and avoid entering into these singular spaces, because that becomes yet another stressor - to try and convince practitioners that things are connected to each other.
What I would like to see is improvements to our pain assessments (do you know the history of how we came up with the 1-10 pain scale? It’s a doozy!) What women need is practitioners who can exist on the bridge between emotional care and physical care, and even when the practitioners exist, we need research to better elucidate the connection between. In which situations does one exacerbate the other, and in which situations is it irrelevant? So many questions!
This point -- "What women need is practitioners who can exist on the bridge between emotional care and physical care, and even when the practitioners exist, we need research to better elucidate the connection between" -- is so spot on. And, yes, so many questions!
The "fracturing of concerns" is especially interesting. Especially when viewed through the lens of body-mind-body (mind-body-mind-body-...).
As a clinician, when you are able to capture the cycle at some point and create a path towards stopping (or slowing) how does that work towards health/recovery? I'm so curious how this could be implemented and replicated in care flow. Can it?
(also, I'm really curious about the history of the pain scale now!)
First is a skill that’s being “untaught” in medical school - the skill of listening and observation. Sometimes that’s alluded to as how much time is (or isn’t)spent with a patient, but it’s not about time, it’s about sharpening how one listens and observes. Dr. Abraham Verghese and a few others are emphasizing this in residencies, but their voices get drowned out by the appeal of learning the algorithms, lab results, and the comfort of being able to say “I know the ICD code for that and I have a prescription for it”
Second is the idea of collaboration with a patient. In my practice, I find that when we remove the barrier of “Doctor knows best”, and instead replace it with “Doctor knows some things”, we get a much more functional approach to care. If women don’t have to convince someone or dismiss their own experiences or preferences, we can finally get a line of sight into where in the cycle of pain is originating and what is most accessible to that woman to address. She doesn’t have to piece it together herself (which they often are doing) but she also doesn’t have to hand over all knowledge gathering and decision making to someone else. That in itself is a change in the stressor. It then decouples pain from the stress of isolation in the search for solutions.
I don’t think it’s a challenge to consider this in the care flow, but practically it feels far away, because of how we train our practitioners to divide these skill sets.
Also: a quick primer on the pain scale that’s easy to absorb is from the always wonderful Radiolab!
The frustrating thing is that all of this makes so much logical sense -- "That in itself is a change in the stressor. It then decouples pain from the stress of isolation in the search for solutions."
I appreciate how you tee'd this up with it being "untaught" in medical school and the training of "dividing skill sets". What would it take to recognize that, if/when you divide skill sets, those who have expertise in collaboration -- listening and observing and deferring to patients as experts in their own bodies -- need to be incorporated back into healthcare, even if they aren't MDs?
Molly I kid you not, I was laying here on the floor in the middle of my pelvic floor PT exercises looking for another great Substack to listen to when your article posted! I’m so grateful you are covering this topic because even before I got to the end I was planning to comment that I now believe pelvic floor PT should be a normal protocol for postpartum care, now that I’m finally doing it 2.5 years after my 3rd child and several symptoms still haven’t “resolved themselves” like we’re told they would. I’m about 2 months in and it’s making a huge difference and it really is relieving some of that stress I felt over the issues not resolving. Can’t wait to hear your interview with Careen and learn more about Origin!
Oh my goodness, that is funny timing, Lisa! I love how we think (been "programmed" to think?) that these things will "resolve themselves". I'm 8 years post baby and, nope, the problems haven't "resolved themselves".
Besides pregnancy and birth, is there any other major health event with physical body trauma where the expectation is that things will just "resolve themselves"?!
I’m no doctor but I’m pretty sure that list is fairly small, and includes people whose mental health suffers along with their bodies as they’re told to just wait things out.
update! Um... wow... everyone needs to know about their pelvic floor muscles. So far, I have gone twice to my pelvic floor specialist for help with my back/hip issues and it is seriously some sort of wizardry. Instant relief. And funny enough, my sneeze pees resolved immediately too and I haven't even gotten to the strengthening part of the work, just the "unknotting" of my muscles.
I guess the tension was adding to that issue not just the post-baby weakness that we all just accept as a part of bearing children. How silly.
This is such an important point--that the stress about the symptoms or condition is such a profound modulator of the experience of pain.
Halfway through my first pregnancy, I experienced excruciating Pubic Symphysis Dysfunction (SPD) where the joint that connects the left and right sides of the pelvis separated, and one side actually jutted in front of the hour. Nicknamed "lightning crotch," this created an acute stab of pain with every step, and made tackling the long flight of stairs to my bedroom daily torture. But thankfully, my OB knew enough to refer me to a great women's health PT group, and my therapist was able to do some internal work to provide a bit of relief, and the pain completely resolved within a few weeks after delivery.
Instead of being made to feel like a crazy person, I had a diagnosis almost immediately, and felt like I was getting the care I needed, so even though the pain persisted, my experience of it wasn't particularly stressful. I loved being pregnant and birthing my 9lb 9oz baby drug-free, so much that I did it again a couple years later, knowing the SPD would return. With that second labor and delivery, I used hypno babies, and experienced no pain during hours of contractions until I had to push and there was a hiccup in the transition of my audio hypnosis tracks. It sounds "woo woo," but there's the power of the mind-body connection!
Two things I thing would help in addition to the insights already shared here are
(1) Integrating some meaningful measures of function into all aspects of US healthcare (this is largely what I write about). When we don't have standardized means of evaluating how pregnant people are moving through the world (literally, how does movement feel, plus: how is your nutrition, how is work going inside and outside the home, what kind of help could you use) we miss out on some pretty big info about life stressors that contribute to health outcomes.
(2) Making the profession of pelvic health PT more visible. I worked in healthcare oversight for years, and didn't know it existed until I needed it. And as I understand it, plenty of physicians are also in the dark. We've all heard the punchlines about sneeze-pee and sharts, but few of us know anything about how our pelvic floors function. This gap in education should be filled not just for healthcare practitioners, but the general public, too. (Maybe if men knew they had pelvic floors, too, it would be a bigger priority?)
Wow, Julie, thank you for sharing your story! Captures this thesis so well.
And your additional two things are spot on!
The call out that we have limited means to integrate "meaningful measures of function", especially as it relates to pregnancy fascinates me.
And, YES, pelvic health PT! And everyone to know about it and value it and recommend it, etc. Isn't it amazing that we're perfectly comfortable joking about post-birth pelvic floor issues but we rarely get the counter of "uh, sounds like a pelvic floor issue... maybe you should go see someone". I'm all about prettier options for women's incontinence issues but... c'mon... we should be revolting and demanding insurance coverage for pelvic health and have it fully wrapped into postpartum care pathways.
Side note -- I actually think that hypnobirthing is fascinating and definitely works (your case in point!).
It works... when it works. It's the compounded stress of "failure" in when it doesn't work that I worry about. It's all in the messaging of the program.
I have endometriosis, and was nodding my head vigorously throughout this piece. It’s extremely hard to live with chronic pelvic pain that does not have a single-factor cause or solution. (Jessica Murnane does a great job of writing about this.) It is a huge reason why I have kept up with my mindfulness practice even as a busy parent. And, I think it’s so important not to blame people for not somehow having the ability to magically think their pain or fertility issues away, which is just cruel. (I love what Kate Bowler has to say about this.)
Also: Having a great pelvic floor therapist to support both mind and body can be so life changing! It is a crime that for so many it is still prohibitively expensive and/or not always covered by insurance. In my experience, they often have creative ideas and intuitive leads to try where people like OBs may just throw up their hands.
Thank you for digging into this and good luck with your doc :)
It's insane that pelvic floor therapy isn't (often) covered by insurance. And, yep, you probably guessed it, I will be paying out-of-pocket for my PT visit despite having pretty damn good insurance!
I think that comes back to the data gaps. It's hard to convince an insurance company on the ROI of covering something if you are working within the current limitations of a female-leaning health issue. It's why companies like Origin are important beyond the day-to-day service they provide. Industry-shifters.
I'm looking forward to reading your interview about Origin! And just really appreciate your mapping project in general, and the framing of this as an opportunity to shift things for the next generation. Naming it to tame it, etc.
I’ve worked clinically for years with women suffering with chronic pain, sometimes pelvic, sometimes not - I’m so glad that Carine pointed pain out explicitly for the project. The cycle of mind and body chasing each other (or as you have phrased it, body-mind-body) is difficult as a clinician to capture and stop the cycle. But at the very least it’s important to recognize that pain triggers the stress cascade which exacerbates the pain - women go for decades without recognition of this stress due to pain.
Instead when stress does get acknowledgment, the framing is “If it’s stress, it’s on you, it’s in your head” which we know isn’t the case.
Aside from women rarely being asked about non-fertility based symptoms, a major issue with the commonly practiced care model, is a fracturing of concerns. Pain is addressed through a body only approach, when it doesn’t live solely in muscles, tendons, nerves. Stress is addressed in through a mental/emotional approach, when it clearly doesn’t live only in the brain. Women who are suffering can see this fractured approach from a mile away, and avoid entering into these singular spaces, because that becomes yet another stressor - to try and convince practitioners that things are connected to each other.
What I would like to see is improvements to our pain assessments (do you know the history of how we came up with the 1-10 pain scale? It’s a doozy!) What women need is practitioners who can exist on the bridge between emotional care and physical care, and even when the practitioners exist, we need research to better elucidate the connection between. In which situations does one exacerbate the other, and in which situations is it irrelevant? So many questions!
Thank you for this, Thara!
This point -- "What women need is practitioners who can exist on the bridge between emotional care and physical care, and even when the practitioners exist, we need research to better elucidate the connection between" -- is so spot on. And, yes, so many questions!
The "fracturing of concerns" is especially interesting. Especially when viewed through the lens of body-mind-body (mind-body-mind-body-...).
As a clinician, when you are able to capture the cycle at some point and create a path towards stopping (or slowing) how does that work towards health/recovery? I'm so curious how this could be implemented and replicated in care flow. Can it?
(also, I'm really curious about the history of the pain scale now!)
In my experience, there are two key pieces:
First is a skill that’s being “untaught” in medical school - the skill of listening and observation. Sometimes that’s alluded to as how much time is (or isn’t)spent with a patient, but it’s not about time, it’s about sharpening how one listens and observes. Dr. Abraham Verghese and a few others are emphasizing this in residencies, but their voices get drowned out by the appeal of learning the algorithms, lab results, and the comfort of being able to say “I know the ICD code for that and I have a prescription for it”
Second is the idea of collaboration with a patient. In my practice, I find that when we remove the barrier of “Doctor knows best”, and instead replace it with “Doctor knows some things”, we get a much more functional approach to care. If women don’t have to convince someone or dismiss their own experiences or preferences, we can finally get a line of sight into where in the cycle of pain is originating and what is most accessible to that woman to address. She doesn’t have to piece it together herself (which they often are doing) but she also doesn’t have to hand over all knowledge gathering and decision making to someone else. That in itself is a change in the stressor. It then decouples pain from the stress of isolation in the search for solutions.
I don’t think it’s a challenge to consider this in the care flow, but practically it feels far away, because of how we train our practitioners to divide these skill sets.
Also: a quick primer on the pain scale that’s easy to absorb is from the always wonderful Radiolab!
https://radiolab.org/podcast/233143-pain-scale
The frustrating thing is that all of this makes so much logical sense -- "That in itself is a change in the stressor. It then decouples pain from the stress of isolation in the search for solutions."
I appreciate how you tee'd this up with it being "untaught" in medical school and the training of "dividing skill sets". What would it take to recognize that, if/when you divide skill sets, those who have expertise in collaboration -- listening and observing and deferring to patients as experts in their own bodies -- need to be incorporated back into healthcare, even if they aren't MDs?
Molly I kid you not, I was laying here on the floor in the middle of my pelvic floor PT exercises looking for another great Substack to listen to when your article posted! I’m so grateful you are covering this topic because even before I got to the end I was planning to comment that I now believe pelvic floor PT should be a normal protocol for postpartum care, now that I’m finally doing it 2.5 years after my 3rd child and several symptoms still haven’t “resolved themselves” like we’re told they would. I’m about 2 months in and it’s making a huge difference and it really is relieving some of that stress I felt over the issues not resolving. Can’t wait to hear your interview with Careen and learn more about Origin!
Oh my goodness, that is funny timing, Lisa! I love how we think (been "programmed" to think?) that these things will "resolve themselves". I'm 8 years post baby and, nope, the problems haven't "resolved themselves".
Besides pregnancy and birth, is there any other major health event with physical body trauma where the expectation is that things will just "resolve themselves"?!
Ah, women's health...
I’m no doctor but I’m pretty sure that list is fairly small, and includes people whose mental health suffers along with their bodies as they’re told to just wait things out.
update! Um... wow... everyone needs to know about their pelvic floor muscles. So far, I have gone twice to my pelvic floor specialist for help with my back/hip issues and it is seriously some sort of wizardry. Instant relief. And funny enough, my sneeze pees resolved immediately too and I haven't even gotten to the strengthening part of the work, just the "unknotting" of my muscles.
I guess the tension was adding to that issue not just the post-baby weakness that we all just accept as a part of bearing children. How silly.
This is such an important point--that the stress about the symptoms or condition is such a profound modulator of the experience of pain.
Halfway through my first pregnancy, I experienced excruciating Pubic Symphysis Dysfunction (SPD) where the joint that connects the left and right sides of the pelvis separated, and one side actually jutted in front of the hour. Nicknamed "lightning crotch," this created an acute stab of pain with every step, and made tackling the long flight of stairs to my bedroom daily torture. But thankfully, my OB knew enough to refer me to a great women's health PT group, and my therapist was able to do some internal work to provide a bit of relief, and the pain completely resolved within a few weeks after delivery.
Instead of being made to feel like a crazy person, I had a diagnosis almost immediately, and felt like I was getting the care I needed, so even though the pain persisted, my experience of it wasn't particularly stressful. I loved being pregnant and birthing my 9lb 9oz baby drug-free, so much that I did it again a couple years later, knowing the SPD would return. With that second labor and delivery, I used hypno babies, and experienced no pain during hours of contractions until I had to push and there was a hiccup in the transition of my audio hypnosis tracks. It sounds "woo woo," but there's the power of the mind-body connection!
Two things I thing would help in addition to the insights already shared here are
(1) Integrating some meaningful measures of function into all aspects of US healthcare (this is largely what I write about). When we don't have standardized means of evaluating how pregnant people are moving through the world (literally, how does movement feel, plus: how is your nutrition, how is work going inside and outside the home, what kind of help could you use) we miss out on some pretty big info about life stressors that contribute to health outcomes.
(2) Making the profession of pelvic health PT more visible. I worked in healthcare oversight for years, and didn't know it existed until I needed it. And as I understand it, plenty of physicians are also in the dark. We've all heard the punchlines about sneeze-pee and sharts, but few of us know anything about how our pelvic floors function. This gap in education should be filled not just for healthcare practitioners, but the general public, too. (Maybe if men knew they had pelvic floors, too, it would be a bigger priority?)
Wow, Julie, thank you for sharing your story! Captures this thesis so well.
And your additional two things are spot on!
The call out that we have limited means to integrate "meaningful measures of function", especially as it relates to pregnancy fascinates me.
And, YES, pelvic health PT! And everyone to know about it and value it and recommend it, etc. Isn't it amazing that we're perfectly comfortable joking about post-birth pelvic floor issues but we rarely get the counter of "uh, sounds like a pelvic floor issue... maybe you should go see someone". I'm all about prettier options for women's incontinence issues but... c'mon... we should be revolting and demanding insurance coverage for pelvic health and have it fully wrapped into postpartum care pathways.
Side note -- I actually think that hypnobirthing is fascinating and definitely works (your case in point!).
It works... when it works. It's the compounded stress of "failure" in when it doesn't work that I worry about. It's all in the messaging of the program.
I have endometriosis, and was nodding my head vigorously throughout this piece. It’s extremely hard to live with chronic pelvic pain that does not have a single-factor cause or solution. (Jessica Murnane does a great job of writing about this.) It is a huge reason why I have kept up with my mindfulness practice even as a busy parent. And, I think it’s so important not to blame people for not somehow having the ability to magically think their pain or fertility issues away, which is just cruel. (I love what Kate Bowler has to say about this.)
Also: Having a great pelvic floor therapist to support both mind and body can be so life changing! It is a crime that for so many it is still prohibitively expensive and/or not always covered by insurance. In my experience, they often have creative ideas and intuitive leads to try where people like OBs may just throw up their hands.
Thank you for digging into this and good luck with your doc :)
It's insane that pelvic floor therapy isn't (often) covered by insurance. And, yep, you probably guessed it, I will be paying out-of-pocket for my PT visit despite having pretty damn good insurance!
I think that comes back to the data gaps. It's hard to convince an insurance company on the ROI of covering something if you are working within the current limitations of a female-leaning health issue. It's why companies like Origin are important beyond the day-to-day service they provide. Industry-shifters.
I'm looking forward to reading your interview about Origin! And just really appreciate your mapping project in general, and the framing of this as an opportunity to shift things for the next generation. Naming it to tame it, etc.
Thank you, Rose!