This tripartite series is dedicated to those exhausted by mulish medical issues. Part 1 demystified the diagnosis dilemma; Part 2 provided time-saving tips for health insurer evasion and brought order to medical bill madness. In Part 3, we’ll explore post-surgery disappointment and symptom management.
At the first postoperative visit after my endometriosis surgery, the surgeon said, “What you have is worse than cancer and beyond Western medicine.” It seemed he relegated me to a forgotten island for medical castaways. I’d lost trust in conventional medicine, but, at that point, I knew: I needed to cultivate my own health path.
If you’re a medical castaway, this post is for you. You’re not just another.
Here’s what I’ve learned, as I’ve scouted and settled into my own, more hospitable escape from conventional heath care and its contaminated corporate system.
Post-Surgery Surprises
I hope for sweet surprises around time’s uncertain corners. But, sour surprises jumble the jubilance of an unexpected gift. Surgery – drastic and benevolently barbaric – fixed some problems but left a puzzle of unexpected, unfitting ones.
I’m thankful surgery exposed the severity of my endometriosis: it stuck several organs together and invaded tissue around my digestive system and diaphragm. The surgeon unstuck organs, which relieved certain symptoms.
But, a robot cutting me open caused other problems. It’s been over ten months since surgery, and these post-surgery surprises are still bad company:
- It’s more difficult to digest food.
- It’s painful to sit.
- Sciatica returned, after it had abated for several years with physical therapy and lifestyle adjustments.
- I have more frequent, excruciating pain (it feels like my insides are about to burst).
- I started having acute pain around my heart.
- I’d heard stories of women quickly getting pregnant after endometriosis surgery, but for us, it’s not time. Fertility doctors now add to the enigmatic health equation.
Of course, I followed-up with my surgeon and consulted three more. What to do when a remedy of last resort causes a discouraging domino effect?
You could go to two or three doctor appointments per week, in search of answers. I did: general practitioner, physical therapists, surgeons, fertility doctors, kinesiologist, naturopathic doctor, gastroenterologist, cardiologist, OBGYN.
You could research until the EMFs leave you loopy. Done.
You could be baited into a gullible game of the next best supplement or superfood. I played and lost that, too.
You could take haphazard advice from people who don’t know half your symptoms. Check.
You could listen to health podcasts in an addictive amount. I’m raising my hand.
You could feel very sorry for yourself and expect your husband to know the degree of your suffering, even though you pride yourself on silently bearing it. Ashamedly admitted.
My surgeon was right – for me, Western medicine is out of answers. I want to abandon the depleting, desperate pursuit of the scientific explanation for my painful symptoms.
Pain is a messenger, but when I can’t decode the message, it’s like receiving persistent, distracting, uncomfortable phone calls each day from someone screaming at you in a foreign language. After months of blaring, but cryptic, interruptions, I want to yell back.
Doctors may give insights into the twists and turns of your medical maze, but they aren’t responsible to get you out. You are. When the experts sent me packing, my compass pointed to the following four principles.
Before offering my compass, I’d like to note: my medical escape is not from a terminal disease. For those with a terminal diagnosis, this article is inferior to your need.
Civilized Principles for Savage Post-Surgery Symptoms
1. Responsibility.
You’re responsible for your health decisions.
Scouting a health escape, without service for jarring interruptions, isn’t a path paved with perennials. Before you chart your course, you’ve got to be responsible for directions to your desired destination. Otherwise, you’ll be lost or rely on someone who may lead you to a dead end.
It’s good to seek help (doctors, experts, caretakers), but it’s bad to rely on them without thinking for yourself. It’s easy to have a medical regret, when you don’t own the decision.
Thinking for yourself is more empowering than reliance on another’s opinion. I’m not saying: don’t take expert opinions into consideration. I am saying: ultimately, you have to decipher if the “expert” provides the best option for you. When a doctor provides an opinion for treatment, you have a choice, even if your symptoms demand instant relief. You’ll experience the consequences of your health problem and its treatment the most.
When you start to own your health decisions, you realize the best way to avoid an unhealthy medical system in the first place is to make the best health decisions possible, long before pain has your number.
I used to inexplicably expect good health, irrespective of my chemical and biological choices. I thought good health was an entitlement. Pain seamlessly fractured this fragile fiction. Good health is earned, just like anything worthwhile. This doesn’t mean bad health is deserved; heartbreaking tragedies happen. But, good things take work.
Taking care of yourself requires intentionality and a marathon mindset. With the dominance of pharmaceuticals, it seems like good health is easy. It seems, unlike every other good thing humans have made, like good health isn’t practiced and earned.
2. Humility.
Charting your course to a medical escape is a true adventure; medical issues beyond the realm of current science are the pinnacle of uncertainty. You’re not sure: how you got there, how you’ll keep balancing and how you’ll get down.
Current science may not have the explanation, even if standard treatment (like surgery) is recommended. Perhaps, the most advancing principle for civilization is … humility? When there isn’t a current answer, acknowledged ignorance is the starting point of an intellectual quest for a better way.
Don’t be too proud or embarrassed to question a doctor. Keep questioning, until you have a simplified understanding about why a treatment will or won’t work. It’s good for a doctor to discuss limitations of a treatment.
When surgery doesn’t operate as intended, it’s a disjointed feeling. I think the collective view of medicine wears blinders: medicine is a practice; it’s not perfect. Doctors aren’t prescient. Their knowledge is admirable, not divine.
To be more precise about surgery …
Surgery (or other standard treatment) may be the ticket to relief and recovery. Do I regret my endometriosis surgery? According to current medical wisdom, surgery is the only way to remove endometriosis, and I’m thankful for some relief. I’m seeing an acclaimed endometriosis surgeon for a potential, second surgery. He thinks my worst pain is from internal scar tissue that didn’t heal properly from the first surgery, and my ovary may now be stuck to my abdominal wall. I dread another surgery, but if a second surgery is the only way to properly heal the first surgery (with different methods), I’m willing to hear him out. I’ve learned of women having multiple surgeries for endometriosis, but with this acclaimed surgeon, the second surgery should (please, God) be my last.
With the possibility of my second endometriosis surgery, I still say: try the least invasive option and avoid surgery. As I’ll explain below, I think I’ve tried nearly every nonsurgical option to treat my symptoms. My non-endometriosis surgeries were disappointing, as well (lower back and bunionectomies).
If you have invasive treatment, know the black and white risks and unwritten realities. Once you have a physical piece, designed to function with unique you, surgically modified or removed, you won’t function the same. This seems self-evident, but operative patient beware of the consent forms you sign and the unwritten bargain you make.
Since “death” seems to be a standard risk on a surgery consent form (I’ve alarmingly noticed this more frequently on nonsurgical forms, too), you wouldn’t think there are many post-surgery surprises. The practical realities of living with incomplete or modified cells comes with a disorienting twist.
I’m not referring to an organ transplant or surgical substitution, which supports biological function. I’m not referring to removal of destructive cells. I am referring to permanent removal or modification of benign cells designed specifically for a unique, vital function. In other words, as a surgeon bluntly advised me: surgeons think the remedy is removal, but they tend to indiscriminately, overzealously remove the functional with the destructive. Surgeons are trained to cut out the problem, not heal it.
With surgery, your body suffers trauma, scar tissue forms, and the surgery area may be weakened indeterminately. Your body has to compensate for the removal or change. Recovery may be harder than expected.
Before my endometriosis surgery, on the black and white consent form, my surgeon wanted to include an oophorectomy (ovary removal). Unless keeping an unpatentable organ would cause disproportionate harm, I told the surgeon to keep custom-designed cells. Try to remove as little benign cells as possible, and prepare for potentially modified, long-term function. Surgery is biologically nonrefundable.
When standard treatment, like surgery, doesn’t work, discouragement is effortless. When your progress isn’t at a certain pace, your efforts and suffering may seem Sisyphean. Don’t give up. This brings me to the next point.
3. Perseverance.
If I had three wishes, all of them would be instant healing. Even if you make healthy decisions and relentlessly pursue answers, it takes your body time to change. In the meantime, you’re counting the seconds to find relief for presently incurable issues.
I’ve used a variety of conventional and unconventional routes for relief:
- conventional doctors (after filling out literal stacks of monotonous, consequential paperwork and tiny-print contracts with little bargaining power)
- removed toxins from in, on and around my body (food, personal care products, cleaning products)
- red light therapy
- acupuncture
- dry needling
- physical therapy
- castor oil packs
- several tests: standard blood tests, hormone panels, MRI’s, CT scan, EKG, echocardiogram, colonoscopy, endoscopy, food sensitivity test, ultrasound, HSG, glucose tolerance test, genetic carrier test, sucrose breath test.
I’m thankful for these tests. I’m thankful I’ve seen doctors. I’m thankful I’ve tried unconventional remedies. But, when you’re stranded in a sea of medical uncertainty, physically spent from treading water and psychologically spent from doubts you’ll ever spot solid health ground again, it’s rather uncomfortable.1
Uncertain of how much longer you’ll need to endure and when the next storm hits, you have a choice. Decide what you’ll do in the next uncomfortable moment or give up and sink. If you’re about to sink, call your closest friend. I know she’ll be a buoy in dire straits.
4. Good companions.
My lifeline of friends pray for me, root for me and check-in. Their support and wit send my despondency to the deep.
The best post-surgery non-surprise? My husband doesn’t seem to notice or remember severely unflattering medical experiences. He’s seen me in quite pitiful states, but he still treats me like a treasure. He’s an expert listener and comforter.
There’s hope for your health.
Responsibility, humility, perseverance and maintaining vibrant relationships is trying in “normal” circumstances. Most doctors and experts won’t empower their patients with this undesirable: health is hard work. When your body is falling apart, it’s exacting.
If you’re a medical castaway, you have a choice. Pioneer uncultivated options or give up before you appreciate new views. You may not have the healing answer, but the doctors also won’t tell you: you have the power to choose. There’s hope, if you choose it.
Banished from the garden, our bodies are outside paradise, for the moment. For now, disease and sickness are part of our world. But, I hope this post equips you to leave the tired, old medical world for the new, empowered to explore and map a fresh health haven. You’re not just another, and you’re not just another medical castaway.
This concludes my series, “How to Navigate Endometriosis in an Unhealthy Medical System“. You’re not just another: patient, medical billing recipient or medical castaway. If you’d like to leave feedback, please comment below.
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- On my search, I discovered some comforts:
Red light therapy helps with my hand and period pain.
The naturopathic doctor provided the most effective practices.
I should only eat and drink hot things, because my digestive system can’t handle cold substances.
Although other doctors (GP, OBGYN, surgeons) had my blood work, without even looking at it, the naturopathic doctor diagnosed me with anemia. I brought my blood work on the following visit, and she was right. I’ve significantly increased my red meat (organic, grass-fed, when possible) and iron intake. I don’t feel as wiped out throughout the day!
Dry needling provided temporary relief.
Castor oil packs (I make mine homemade) soothe pain.
Don’t buy supplements without testing the root cause first. It’s tempting to hear an ad and think it’s a magic fix. You may be making things worse, if you don’t know what’s wrong with you, and you’re taking the wrong supplement. And, you’re burning money. Yes, I made this mistake.
Set a health budget. Hopefully, you’re already building an HSA, to cover your annual deductible. If not, set aside money to invest in your health and for health emergencies. Track your health spend. Although medical costs are confusing and stressful, for tips dealing with insurers and medical billers, see Part 2 of this series. ↩︎