5 Reflections from 5+ Years of Managing Pelvic Organ Prolapse & Levator Ani Muscle Avulsion
If I could time travel back to 2019, here's what I wish I could tenderly share with that devastated version of myself (and anyone in that space now)...
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Almost six years ago, I sat in a urogynecologist’s office and blinked back tears as I was advised to “learn to love gentle walking” and to “come back when you’re done having babies and get surgery.” I asked, “Can I ever go backpacking again?” She looked at me with what could only be described as a cruel mix of amusement and pity and said enthusiastically, “You can still go car camping…”
When I looked at the appointment note, she had written, “Stage 2 pelvic organ prolapse. Patient had many questions, wanted extensive information.” I remember reading it and thinking, “But I got almost no helpful information…”
It’s impossible to put into words the utter devastation I felt. The panic of being trapped in a body that felt foreign. The unwarranted shame at having my body wrecked by the thing it was designed to do. The grief of an envisioned future shattered. The inability to even dream. The creeping thought that maybe there was no bright light at the end of this tunnel… that maybe the sooner I was gone, the sooner my perfect daughter could get the un-broken replacement mother she deserved.
Six months later, at my follow-up appointment, the note read, “Not responding to treatment. She has been unable to resolve her symptoms with PT nor with many different pessaries. We over-ran her one appt with me in May. Today she has many questions. She is considering many options, including adoption of any further children. She is discouraged and feels betrayed in that she did not know that these changes could come with a single delivery. I have offered a cystocele repair as a temporizing measure, but she declines this.”
So many questions. Feels betrayed. Not responding to treatment. She declines…
As a 2nd year clinical health psychology doctoral student quickly learning the language of healthcare, it was quite clear — my chart had officially labeled me as a problem patient.
Now… almost six years later… not only did I stick around to find out whether life could feel full again… but I brought a second little love into this world… defended my dissertation on factors shaping mental health outcomes following birth-related pelvic floor injuries and conditions… and as a postdoctoral fellow, now provide therapy to others piecing their lives back together after birth injuries, perinatal trauma, and medical gaslighting.
I learned to love gentle walking in spite of her advice, not because of it. I learned to love gentle walking alongside my babies as they took their first steps, and I also learned to stop listening to non-evidence-based off-limits lists when deciding what my future might look like.
Since that appointment, I’ve hiked with my babies and toddlers on my back, tackled technical mountain biking trails, competed in a bucket list xc ski race, returned to heavy lifting in the gym, and can jog alongside them as they scooter through the neighborhood without fear of making my prolapse worse.
I didn’t have a road map when I was first diagnosed with a levator ani muscle avulsion and pelvic organ prolapse. I didn’t know anyone else who had experience this (i.e., I didn’t know anyone else who was willing to talk about something so shrouded in shame and stigma in our society). But I have dedicated my career to increasing support resources for others… helping others feel a little less alone and broken than I did.
I wish I could say, “and here’s how I reattached my avulsed pelvic floor muscle and reversed my prolapse!” But the truth is… all the good… every triumphant moment that has happened since my daughter was born on April 11, 2019 happened *with* a chronic avulsion injury and pelvic organ prolapse that has never reduced in grade or become fully asymptomatic.
If I could time travel back to 2019, here are five insights I wish I could tenderly whisper to that devastated version of myself.
1. Distress as a reaction to a prolapse diagnosis is valid; don’t let anyone gaslight you into thinking you’re overreacting and not deserving of support. And counterintuitively, postpartum mental health providers may not be the best support option.
In my personal and professional experience, as well as the research I’ve conducted, I’ve come to understand that for those of us with prolapse and/or another significant birth injury, being blindsided by something we did not even know was possible prior to its occurrence is unfortunately the norm not the exception. The feeling I’ve gotten from many providers is that the resulting distress is somehow out of proportion.
I’m here to say — It is NORMAL to be distressed when our lives are turned upside down… when we are diagnosed with something that for many of us, will be “managed” versus fully reversed… when we experience a major contrast between expectations and reality. It is normal to experience grief in response to loss of valued activity, envisioned future, etc.
Unfortunately, many perinatal therapists are not familiar with birth injuries or their impacts, which means that it can be hard to find or access appropriate mental health support. I remember spending my first three sessions (and $375 painfully budgeted out-of-pocket dollars) educating my therapist on what prolapse was and why it was distressing. What I’ve learned — there are very few therapists specializing in treating birth injuries, but that doesn’t mean there are no appropriate support options. Many will benefit more from working with a mental health professional specializing in addressing the mental health implications of physical health conditions or injuries (like a health or rehabilitation psychologist) than a perinatal mental health therapist.
Medication can also be an incredibly valuable tool to get through the darkest days. I may write a separate article on this in the future, but briefly — with regard to medication, my only regret was not starting sooner and thinking that my training background might be sufficient to pull myself out of my dark spiral. Pairing medication with mental health support and physical rehabilitation efforts was so helpful. In particular, medication helped with rumination, compulsive prolapse checking, and middle-of-the-night panic, all of which made it nearly impossible to be fully present with my daughter or any otherwise-enjoyable activity. Sleep is like a resilience blanket during the tumult of the postpartum period, and so while getting more sleep didn’t fix my prolapse or make everything feel ok, it helped create space for me to cope more effectively.
2. Healing takes time… for most of us, far longer than 6 months
In contrast to what I was told, it was *not* the case that all healing or improvements happened within the first six months. I was told by several providers that the six month mark was the time at which all possible improvements would have happened. This framework — believing I had a rapidly closing window to improve my prolapse, after which all hope would be lost, was incredibly damaging for my mental health and ability to be present with my baby. While there’s of course value in prioritizing intentional postpartum rehabilitation, I got sucked into a frenetic, compulsive, “exhaust all possible options” approach to healing my prolapse that amplified fear and anxiety, created unhelpful hypervigilance to symptoms, sent me down google rabbit holes and constant research spirals trying to uncover every possible resource for improvement, and made question whether I should stop breastfeeding early (which was going well and was a really special part of my relationship with my daughter) in case it brought improvements.
The reality is, I experienced the most improvements after 15 months postpartum. The most improvements in functioning, quality of life, symptom severity, and mental health came with time and when I stopped letting my life and activities be ruled by symptoms and fear of worsening. I wish I would have known that how I felt at 6 months — AWFUL — was not how I’d feel forever. And while I know I couldn’t have known this, I also wish I would have known that no amount of effort was going to be sufficient to fully undo the damage done, and that pelvic floor rehab was a marathon not a sprint. As a society we’ve seen huge strides in pelvic health awareness and resources over the past few years. And so in the context of this exciting push for accessible pelvic floor rehab for all, I know this next line will go against the grain a bit — but I actually wish I would have spent less time doing programs and pelvic floor exercises and more time just being with my baby. (I also know myself… and I know that no one could have convinced me to let off the gas with regard to pelvic health rehab. I know myself… and I had to know that I tried as hard as I possibly could to heal to have no regrets, even though in retrospect, with the information and perspective I have now, I wish I would have done a bit less.)
Hear me loud and clear — this is not me saying that I believe pelvic floor physical therapy or physical rehab efforts are futile. I took a very intentional, consistent, and progressive approach to pelvic floor rehab after my 2nd baby was born, highlighting the role I firmly believe it plays. Rather, an excessive and compulsive “try all the things” approach can sometimes shrink a person’s life more than it expands it. For many things in life, there’s a point at which more effort does not result in better outcomes.
3. Unfortunately, many of us have to push hard for high quality care. (You are not the problem.)
I could write a book on this topic alone, but for the sake of my goal of finishing this post before I see my next patient, I’ll keep it brief. My first PT prescribed 300 kegels a day, which kicked off a cycle of intense hypertonicity and pain that took over a year to undo. A urogynecologist told me to not lift anything more than ten pounds (forever!) and I lost almost 15 lbs of muscle in the months following my diagnosis, which resulted in increased pelvic floor symptoms due to deconditioning. It took me over two years to find a provider who was willing to prescribe a cube pessary, which turned out to the be only model that gives support and allows me to do higher-impact activities with manageable symptoms. (I’ve since learned this is due to my avulsion injury, but it’s been mind-blowing to realize how few providers know anything about avulsions and how that impacts pessary fit.)
While I’ve had a few excellent PTs who have made all the difference, my medical notes indicate that I’ve been seen by the majority of my providers as as “problem patient” due to self-advocacy and my stubborn refusal to quietly accept symptoms that could be improved through more collaborative, patient-centered care. I’ve had to build comfort with being annoying in order to access appropriate care, which is actually absurd. Whenever we’re talking about trying a different pessary, a new physical therapist, topical estrogen… it’s ok to ask questions, it’s ok to keep seeking answers, it’s ok to want your provider to care about what matters to you as an individual.
4. For better and for worse, pelvic floor issues can’t be (optimally) treated in isolation.
Pelvic health impacts far more than whether or not we pee when we jump or sneeze… and is impacted by far more than kegels. For me, the most profound physical shifts didn’t happen because of endless pelvic floor contractions.
They happened by —
Addressing patterns of tension and guarding (let that belly relax and that booty unclench!)…
Re-patterning breathing and learning to expand my rib cage (in a way that’s helped my pelvic health AND nervous system)…
Learning about and correcting postural and alignment-related aspects of pelvic health (e.g., not pushing hips forward when baby/toddler carrying, reducing rib flare, etc.)…
Building whole body strength so my pelvic floor doesn’t have to take as much of the load…
Making sure I am consistently drinking enough water and get plenty of fiber in my diet…
Strengthening coping strategies and prioritizing restorative time outdoors to reduce the physical impact of stress…
Reading that list might feel overwhelming (it certainly has for me at times). But the good news about everything being connected is that this also means that pelvic floor symptoms are not *just* about the structure or function of our pelvic floor muscles, which I think can be good news for those of us with pelvic floor injuries or conditions less amenable to full resolution, like prolapse or avulsion. The reality is, my pelvic floor will likely never function the way that it did before my daughter was born (still holding out a tiny bit of hope for a future medical advancement). But taking a more “whole body” approach to rehab has been key to enhancing and maintaining quality of life.
5. A full and meaningful life is not reserved only for those who became asymptomatic, and the “off-limits list” may be shorter than we fear.
While I understand why the majority of prolapse rehab content online focuses on how to help people “heal” their prolapse, or become asymptomatic, a singular focus on prolapse reversal or becoming fully asymptomatic can paradoxically be a barrier to helping people live active and meaningful lives. Because the reality is, some of us will be managing symptoms long-term, even when we do all the right things in all the right ways (things like avulsion injuries play a role in this).
I think we can all agree that, in an ideal world, becoming asymptomatic would be fantastic. That's a great goal, and one that will be feasible for many. But “if asymptomatic…” is an unhelpful activity progression guideline for those of us who are symptomatic at baseline. And the idea that an active, meaningful life can’t begin until symptoms disappear can keep us trapped in cycles of fear-based avoidance and reduced engagement in valued activities that can increase depression. Instead, shifting to a “if no symptom exacerbation…” framework and reorienting my relationship to my symptoms (annoying, I wish they weren’t there, but not dangerous, not indicative of worsening, and not needing to dictate activities) has been much more helpful as I progress my own activities.
As I’ve progressed my activities — which include carrying my baby and toddler, hiking, high-intensity road and mountain biking, nordic and downhill skiing, short runs, heavy lifting in the gym, etc — I have *not* experienced progressive worsening in my prolapse or grade. In fact, I’ve experienced less prolapse-related life interference as I allow life to grow around it. This is so different from the belief I held early on (a fear shaped by misinformed providers and unhelpful google searches) — that any wrong movement would send me back to square one or cause permanent worsening. For many of us, the true off-limits list is far shorter than we were led to believe, and it’s possible to return to so much of what we love through intentional, progressive building toward those goals.
I still wish I had had better pelvic health education and prevention resources during pregnancy. I still sometimes feel a sense of heavy grief at the way my transition to motherhood was so painfully different from what I hoped and prepared for, and the way my whole life changed because of it. I will likely never describe being “grateful” for my prolapse. But life is full again. I can dream again. My prolapse is no longer my first thought when I wake up in the morning or my last thought before I fall asleep at night. It’s there in the background but no longer dictating my life or activities. I am so glad I clawed my way out of the trenches to find out.
xx,
Kimberley