It is 4am. I am sore, bruised, swollen, 2 days post-op. I move from sitting in bed to standing, only to break out in a cold sweat and have my hearing go out, replaced with ringing in my ears. Orthostatic hypotension? Pain? Stress? Side effects from the pain meds? – likely all of the above. The pain is worse than giving birth without anesthesia; searing, sharp, it brings tears to my eyes as I grope in the darkness for my hydrocodone and ibuprofen.
I am recovering at home from several hernia repairs (ventral and umbilical). Far from the idealized glowing mother snuggling her newborn, and closer to the image of large disposable labor panties and a painful perineum, this too is post-partum. It has been 3 years since I have had my youngest of 3 children, a large amount of time, and yet, here I am, recovering from a post-partum trauma of sorts.
I am trained as a medical professional, and as those who are know, you are aware of all the worst case scenarios. I am dangerous in that I know so much about the human body, but am also aware of how much I don’t yet know. I first noticed an abnormal bulge on my abdomen when I was pregnant with my youngest. I showed my midwife who brushed it off with a brief, “I’m sure you’re fine”. This was the first medical professional of what would be 8 total over 2.5 years who missed, dismissed, or ignored my hernias during pregnancy and post-partum. These professionals ranged from midwives, to physicians’ assistants, dermatologists, medical doctors, OB/GYNs, radiologists. Was it a lipoma, cancer, cyst, fascial bulge, muscle bulge? I was told I would need exploratory surgery or a CT scan to identify the source.
I finally diagnosed myself, having a spare moment between the unrelenting needs of 3 young children when my youngest was about 2.5 years old. I was on my back, on the floor, frustrated and upset by the lack of answers. I began to manipulate the bulges, something I hadn’t really done before out of fear of the unknown, and I was able to push the bulges back “in”. A hernia, several actually. Of course. How could so many have missed this? How could I? – having minimal time for myself to be IN my body, with the constant distractions of 3 kids, I know I had put my healthcare on the “back burner” – if it wasn’t urgent and I wasn’t dying, it would have to wait.
Prior to figuring out the source of these abnormal bulges, I had several odd medical symptoms. When my youngest was approximately 9 months, I awoke one night feeling like there was a bird trapped in my rib cage – a fierce fluttering on my left side. I took my pulse at my wrist and neck, both of which were normal, and yet I thought my heart was in the midst of failure. I breathed deeply to calm myself, not knowing what else to do. The fluttering passed in 30 seconds or so, but what felt like years. This sensation occurred several times over the course of several months, my doctor ordering an EKG and, later, a holter monitor, both of which indicated a normal, healthy heart. It was also during this time that I would occasionally have deep abdominal pain, wrapping around to my back, and breaking me out into a cold sweat. These pains felt like hunger pains, but eating never soothed them away, though applying pressure to my abdomen did. I recognized later that the fluttering in my chest was likely muscle spasms from my rectus abdominals, which attach onto the rib cage; they were displaced and stressed and likely spasming in protest. The deep pain I would feel on occasion was omentum , the casing that surrounds the abdominal organs, getting caught in the hernia.
I went through physical therapy (PT) for hernia repair, only to find out later that PT does not correct hernias, though it might help with diastasis recti (separation of the rectus abdominus). I did not have a clinically significant separation of the rectus abdominals, per PT standards. I could fit two fingers between the paired muscles, which was the “normal” of 2 fingers or less width. However, my physical therapist gave me exercises to narrow this gap further, along with an abdominal binder (essentially a corset or brace) to keep the diastasis closed and keep the hernia in. At discharge from therapy, my diastasis was closed to a half finger width and more shallow than it had been at evaluation.
However, this experience with physical therapy was another practice in being dismissed as a patient and an individual. All of the patients in this women’s health clinic were likely there for their own unique reasons – incontinence, pelvic floor weakness or trauma, low back pain with pregnancy, and yet we were all doing the same or similar exercises – not one of us getting a noteably specific exercise program for our unique needs. My appointments were initially 3 times a week for 90 minutes each. Because of childcare, length of appointment times, and travel to/from, I talked my clinician in to twice a week for 60 minutes. The inconvenience of these appointments should not be ignored – how many women can coordinate that amount of time, childcare, travel to and from, and missed work for these appointments? Not many, which explained why most of the patients I witnessed in clinic were older adults – waiting until their own children were in high school or college before addressing their healthcare needs. The profession is doing a disservice by being so inaccessible to the very women that need them. And yet, within this 60 to 90 minute time frame, only 10 to 15 minutes were spent with one on one manual therapy I could not do myself, the rest was spent overlapping with other patients while I “warmed up” or reviewed my exercises I was doing at home. Additionally, my clinician often referred to my “back pain” during treatment, though at the time, I did not have any back pain. I was there without pain but specifically as an attempt to correct the hernias. Upon discharge, the PT told me I could resume running, though during our sessions, she had never told me to stop, further she had never asked specifically what exercise I was doing. Later, my binder caused excruciating back pain, a new pain which I never had. My clinician dismissed this new pain and told me to keep wearing the binder; I didn’t, my pain went away, and the hernias returned, no longer having a brace to keep them in. Discussion with other healthcare professionals suggested that this new pain was not unreasonable, likely related to changes in posture and possibly my mild scoliosis, which the PT never assessed. Physical therapy as a profession does great things, and I have witnessed many amazing outcomes; however, this experience was incredibly disappointing and resulted in a loss of thousands of healthcare dollars and many hours spent in the clinic.
After physical therapy, I decided I had done what I could to attempt to correct the hernias myself. They would need fixed, as the hernias could worsen in time and even become life threatening. I waited until my youngest was over 3 years to correct the defects, secondary to the post-operation lifting restrictions I would need to follow (no lifting over 20lbs for 2 weeks or more). There is never a convenient time with life and kids to be recovering from surgery, in bed and sore, sitting up and dizzy.
Yet, my story of dismissal as a patient in healthcare doesn’t end here: next up, my anesthesiologist. While assessing me in the pre-op holding area, he questioned me about my hernias, telling me that I likely had the defect all of my life, that pregnancy rarely produces hernias. I was stunned by his mansplaining of what I knew of my body’s truth. Sure, maybe I had some slight abdominal defect, but pregnancy did cause the hernias. Any google search will show the reader that pregnancy can cause hernias (ex. http://infobaby.org/hernia-after-pregnancy/ – note the picture doesn’t even show a hernia!, http://americanpregnancy.org/pregnancy-complications/hernia-during-pregnancy/ ), though many don’t talk of the post-partum risk of herniation – it doesn’t fit the cute, sexy, or snuggly picture of mom and postpartum that we as a society want to consume. I could not find information about the number of women who get hernias from pregnancy, maybe we don’t know or don’t want to know. The anesthesiologist further questioned me about a nerve entrapment I have (likely because of his positioning needs during my surgery), again talking over me and invalidating my experience of my body. Further, his information was incorrect. He did not know I am a medical practitioner – for ease of documentation, I usually list SAHM (stay at home mom) on my forms, despite all the professional endeavors I actually do, all part-time and, because of that, all feeling half-assed.
All of this I share for a number of reasons, none of which is to draw attention to myself, but to show parallels between my own experience and bigger social themes: the rejection of women’s body knowledge and experience as well as the decline of quality medicine as providers are forced to see more patients in shorter times. Many have likely heard about gender bias in medicine, as patient and professionals, about medical providers’ rejection of women’s body knowledge and medical needs, especially after Serena Williams went public with her birth experience1. My own concerns about the abnormal bumps on my abdomen were relegated to the unimportant and the unknown over the course of years, confounded and confused with odd symptoms like fluttering in my chest and deep abdominal pain. My PT dismissed my reports of new pain from the abdominal binder. My anesthesiologist rejected my own body awareness and knowledge, speaking over me in order to explain to me (incorrectly) what I already knew. What could these providers learn from the women they serve? Why does this gender bias exist and how prevalent is it? How would my trajectory differ, if at all, had I been a male patient with a hernia?
Those of us that work in the medical field also feel the pressure of productivity – the need to fit in more patients and clients into narrower windows of time, clinicians not being reimbursed for the endless documentation although that is part of the job requirement. Maybe this productivity push explained the lower quality of care I received from my providers, the quick brush off of oddities that were not life threatening, the confusion of my symptoms and lower quality of care (ex. canned exercise programs and minimal one on one treatment time). Reimbursement is staying low for medical professionals that aren’t specialists and don’t perform interventions (like surgeries), which is causing a push towards specialization in medicine2 as well as doctors assuming cash-based membership type programs3 . My former primary care physician moved to this model, where clients would pay an annual fee (approx. $1500) to be part of her network and would then have access to her for routine wellness visits, as the physician no longer accepted insurance. The physician was maximizing her payment options and her clients’ time, moving into a model that allowed her longer office visits and better quality of care. There are no easy answers or solutions when systems are intermeshed and dependent on one another – changes in medicine would necessitate changes in staffing, insurance, payments, etc. But by keeping the push for productivity, what are we losing? – quality of care and lost dollars and time as diagnoses are missed, delayed, or treated inappropriately.
Hopefully my story ends here, with a happy enough recovery and a battle scar I will later tell my kids is from a “bear fight” – close enough in assessment anyway and, I imagine, comparable in terms of pain.
But it didn’t end……The story continues: In the months following my first surgery, I knew something was off. The first few days of healing involved minimal swelling, but rather than remain that way, the incision began to enlarge. First, with fluid, which the surgeon would extract through aspiration in his office (with visual effects akin to some horror movie), then later, frustrated and at home, with self-directed care and the use of comfrey. Unlike the heroic medicinal approach of excise and extract, comfrey was gentle and effective. To a point. The swelling remained, months later, but no longer with fluid, but something soft and pliable. The original surgeon had no answers. What followed over the next few months were consultations with specialists: women’s health PT for abdominal soft tissue and fascia release, dermatologists, plastic surgeons, body workers, all costing time and money and patience and not resulting in solutions to the pulling and progressing of my scar.
The incision site was swollen and getting larger, pulling on itself. Scar tissue. Adhesions – Warnings and potential for complications down the road, such as low back pain or impaired pelvic floor health, as abdominal wall health is integral to the low back, pelvic floor, and even the entire body. I decided to have the scar addressed with a corrective plastic surgeon, the only profession confident in their ability to rectify the scar. I found a doctor that specializes in fixing ‘botch’ jobs like mine and moved forward with surgery in April 2019. The problematic, adhered scar is gone, replaced with new incisions to my lower abdomen and a reconstructed belly button. I am told my stomach look like I attempted ‘Japanese suicide’; after looking this up, I agree – the visual is disturbingly accurate. Almost 3 weeks out of surgery and the incision is open slightly and draining, to allow swelling to escape – the healing is moving forward albeit slower than I would like.
I am ready for this story and experience to be complete and am working toward recovery with rest and gentle movement.
The names and specific locations of practice of my providers are not important, as the problem is the medical system, not the practitioners; what is important is the pattern of what is essentially neglect and rushed medicine.
- What needs to change in medicine to allow for an undoing of implicit bias and better quality of care?
- Were you aware of the implicit bias in medical practice?
- Have you experienced misdiagnosis or a dismissal of symptoms in medicine? Can your experience be related to gender or racial bias?
*I wish all of you well on your health and healing journey. Thank you for reading*
(Written by AM. Material is copyright protected, please cite accordingly.)
Suggested reading for:
- Birth trauma:
- Specialization in medicine: https://www.managedcaremag.com/archives/2007/12/how-doctors-are-paid-now-and-why-it-has-change
- Cash-based medical practices: http://time.com/4649914/why-the-doctor-takes-only-cash/
For more reading on this theme: to check out Medicine Woman by Lucy Pearce, regarding the experience of women in reclamation of bodymind wisdom by women
Pictures follow, some are graphic…….
The following pictures are related to the second surgery:
Day of surgery, the enlarged, adhered scar at center, with muscle definition and scar adhesions seen on L of picture
6 days post op. Abdomen looking as described by a friend like “Japanese suicide” (Seppuku)