Mis & Missed Diagnosis

Reading Time: 20 Minutes

TW: Description of medical issues, Dismissive healthcare providers

Where it Began

Over a 10 year period, I begged & pleaded with doctors & health professionals to please help me uncover what was causing me so much pain.

When I first started sharing what I was experiencing physically, my symptoms were quickly dismissed, downplayed & ignored altogether. I remember pointing out on my body where the pain was & was told, “there’s nothing down there but your large intestine, take some Metamucil”.

In the coming years I would hear everything from “you have anxiety”, to “you have a low pain tolerance”, “it’s fibromyalgia”, “could be endometriosis”…

I was written a few prescriptions & sent on my way, little did I know I was about to embark on an incredibly difficult journey. 

“I had been misdiagnosed, but I wouldn’t know it for years.”

This whole situation, being treated like I was blowing my symptoms out of proportion made me feel completely crazy. Equivalent to, being a child crying for attention ( sharing my pain) & an adult giving me something to keep me quiet, or make me sleep (prescription).

It made me question myself about everything, even non health related things ( & I was already very much a question everything kind of person). It was a traumatic ongoing experience that shifted the way I dealt with everyone & life in general. Unfortunately I had no health professionals willing to dig deeper, explore, ask questions, share resources or give me the most basic diagnostic tests.

I was in it by myself.

I didn’t really know how to articulate what was going on to friends or family, & while suggestions people made were coming from a good place, it only added to the isolation. If ibuprofen, meditating, yoga or losing weight would have solved my problem, I wouldn’t have still been going through it.

Adding to the difficulty, it’s a long arduous process to get real help for physical symptoms once “anxiety” is in your file. There are a handful of wonderful doctors out there that do care, & go the extra mile but sadly an “anxiety” diagnosis is often used to explain away your feelings. 

“All I wanted was someone to listen, a resource or space to help me figure out what was wrong.”

Some path to manage the way I was a feeling, to get my questions answered, to fill in the space between appointments with some kind of action to take instead of wondering & worrying.

I wanted to know what was causing me to feel this pain, why I had to miss so many days at work, why I became a recluse & canceled plans all the time ( this only worsened due to the effects of the medications), why I feared everything knowing that the pain could hit at any moment, why I didn’t have the energy or desire to get dressed, shower, eat, brush my teeth or do the most basic things.

The diagnosis 

By the 10 year mark after misdiagnosis I had horrific cystic acne all over my face, neck & back, the lingering pain in my lower left side, pain everywhere that would come & go, debilitating anxiety, digestive issues, the absolute worst, heaviest, periods ever, & a some nice emotional baggage.

There were many facets contributing to my health situation. Getting an accurate diagnosis would be helpful, but still only part of it.

”So as I was in the midst of enduring this long journey, I finally came to find out, what was causing the most “physical” pain.”

It was a recurring hemorrhagic ( bleeding) ovarian cyst the size of a grapefruit, it was missed ultimately because, no one took the time to look.

So in a cycled manner, this cyst would swell, rupture, bleed, swell, rupture, bleed, swell etc. 

Something else discovered, was I had a bicornuate uterus, or heart shaped uterus. It is a congenital condition, that can contribute to pain, reproductive issues & difficult periods. More information that would have been useful years prior.

10 years of multiple doctors & me repeating myself over & over & I was just finding this out.

Now came the question, HOW to manage it? I knew I couldn’t hang much longer in this state, something drastic needed to shift.

“The two options given, were drugs or ovary removal.”

I had already been through so much,  resilience built in a not so envious manner, so I was cautious about my next steps.

I got a diagnosis & the tests I needed yes, BUT previously a misdiagnosis & a long road of pain that I shouldn’t have had to trek.

A diagnosis does not define you just like your symptoms don’t define you… just because there is a protocol or path applied across the board for a certain condition doesn’t mean it will work for everyone.

Everyone deserves individualized care & attention.

The path to manage my pain

I gave myself a 3 month time frame, ambitious yes, but I had to start somewhere & this was when my follow up was scheduled, so it made sense.

In this last year of this 10 year journey I had begun my studies in Natural Nutrition & Holistic Health. Originally I pursued this because of some serious health issues my Dad & Husband were experiencing.

They had very little support in the interim between waiting for appointments or answers & I was looking for ways to fill in the gaps.

“I never realized that what I was learning I would end up applying to my own health issues as well.”

I loved that a holistic approach to health really focused on the individual who was experiencing the health condition, not just the health condition or symptoms alone like conventional, or mainstream healthcare did.

I had been learning how diets & foods can impact certain health conditions, how much emotions influence our overall health & how important it was that an individual’s circumstances were taken into consideration when it came to resolving or managing a health issue.

I was familiar with a route I could take & I was praying hard it would work.

I made a plan & gave myself a time frame.

If I was going to help anybody I had to work through the trial & error, create a process & map out the necessary steps.

“It was time to dig deep & not second guess myself. Time to take the power back over my own body & uncover what was going on.”

My pain, broken out skin, reproductive & digestive issues were all related to key areas in my body that were out of balance. These areas were taxed, compromised, overburdened & I was tired of not knowing how to manage my health.

Extremely important functions were being hindered.

“Lightbulbs began to go off. Every issue I had kept pointing back to the same things & it was all connected.”

Compromised Gut > Compromised Liver > Emotional Issues > Digestive Issues > Anxiety > Reproductive Issues > Pain >  Skin Issues

These were not separate problems, there was a cascade effect taking place in my body that worsened over time. The origin, the source needed to be uncovered, supported… & it wasn’t only one thing.

I had some mud to wade through, it was thick, & heavy… but it started to get easier as time went by, each little bit of everything I was doing began to add up, & I could feel it.

After cleaning up my diet, I was more strategic about what I ate for a period of time. Focusing more of specific foods that would promote support to the areas the areas in my body so far out of balance. I began noticing how different foods affected me, how some items made the pain & symptoms flare.

Lifestyle changes were a large part of this too, incorporating more of what was helpful to me on an individual level & leaving behind what wasn’t serving me.

Learning about the emotional connections behind symptoms & health conditions ( along with how certain organs are affected by prolonged negative emotions or thinking patterns ) was something that I immediately gravitated towards. As someone who spent a very long period of time repressing emotions, it was eye opening how much this aspect affected my health.

Time was moving quickly, I was beginning to feel better, & it was weird, consecutive days without pain? No reason to be fearful because I had a whole toolbox of ways to manage.

My skin began to clear up. The angry splotches & sores that were once all over my face, neck & back were drying up, disappearing.

“3 solid months of trial & error, of effort & dedication. I couldn’t believe I was finally managing my symptoms, my pain.”

I became so in tune with my body, I could easily pinpoint when something was off or make connections if symptoms appeared.

Follow Up

After 3 months, it was time for me to get results from my follow up. My pain had subsided substantially so I was curious about what the report would show.

I couldn’t believe it, the remnants of the cyst were gone, & the few tinier ones in the surrounding areas were gone as well. No swelling, no pain with pressure, no scarring, everything looked healthy.

I didn’t take anything for granted though, asking to see both ultrasound results beside each other, I requested that was I was seeing was explained in detail to me. How did they know it had resolved? What exactly I was seeing in the images?

I was in shock, thinking, certainly this is just psychosomatic that the pain has subsided. My memories of the past 10 years & past 3 months flooded in, I was equally relieved, frustrated & optimistic.

“It had been so long since I had any relief & now to have the results to back it up… the feeling was indescribable.”

It’s weird & it’s wonderful when you are in tune with your body this way, it takes time, it is not overnight. Even once you get into a groove you must have a sort of reverence towards your body, as your body & overall health will evolve & needs will change.

What worked then won’t always work, which is why it is so important that the focus lies on your individual needs, circumstances, body, health history, emotional connections etc.

The reality set in though, that journey was so long & didn’t need to be. This experience though, gave me confidence & strength. 

Confidence in trusting that my body knows when something is off, that when symptoms persist it’s because something is yet to be uncovered. 

Confidence to push & keep pushing for resources & answers. Strength to keep going, even when I feel like I’m beneath the water.

I didn’t come out of this unscathed, it was a traumatic, trying experience, but what I went through has renewed worth every time I have the opportunity to walk alongside someone else going through a similar circumstance.

I can easily put myself back in that place. Feeling dismissed by health professionals, overwhelmed, like I was losing it because no one took me seriously, powerless, not knowing where to start… then I remember what it was like, to channel the helplessness, overwhelm, loneliness & sadness into strength & determination. To be sick of being sick & not set an expectation of total healing but simply learn how to manage. To pick myself up, & trudge through the mud till solid ground presented itself.

Each tiny, shift & simple thing I tried mattered & the progress built with every effort.

“Total healing isn’t always possible, management though, is.”

Everyday I am honored to be a part of someone’s health journey as they learn to tune in & I am given the opportunity to provide a safe space to cry, vent, feel feelings, get angry, & support the channeling of all that energy into pushing forward, moving through, learning how to manage, & trudge through that proverbial mud.

Doctors are not gods, it can feel that way, they are certainly built up in that manner, but at the end of the day, they are human, & all humans make mistakes. 

What a health professional says doesn’t always go, it is not the end all, be all, there are many elements completely overlooked in conventional care.

It’s important that there is an energy match with your healthcare providers, that you feel you are being listened to & valued. If something feels off, you are feeling that for a reason. Check in with your feelings, ask why. It doesn’t mean that a health provider isn’t good at what they do, but you deserve an individualized approach. Maybe you like the freedom to ask lots of questions & receive all of the information, or perhaps you don’t do well with lots of information & need a cliffsnotes version to prevent overwhelm, whatever your feelings are, I promise it’s not because you are difficult. Don’t settle, finding an energy match with a health provider is imperative.

A holistic & conventional approach to health can work together beautifully but it takes openness & willingness. It takes looking at more than symptoms or a health condition alone.

Crafting personalized plans that cover nutrition, lifestyle recommendations, symptoms & their emotional connections is what I love most about my work. Seeing someone else make those connections & witnessing the light bulbs going off takes me back to my journey.

Guiding someone as they tune into their body, so the confidence & strength builds. You become the creator & manager of your overall health.

Have you have navigated something similar with no resolution? Maybe something simply feels off with your health you can’t quite figure out. Would some support help? 

I know what it’s like to be zapped of all the energy, beneath the floor & losing the will to keep going.

“All it takes though is one tiny step, & then another & another.”

Like I said above, healing isn’t always possible, but management is & it will look different for everybody.

I would love the chance to talk to you & see if I am equipped to support you, or could provide any insight to help you along your journey. Give yourself a chance, I will be here for you when you’re ready.

Wishing you ongoing wellbeing & managed health,

Sarah

*This was my personal experience. Individual circumstances & needs have to be taken into consideration, different people require different methods. The only way to truly manage health is uncovering YOUR unique needs & having someone in your corner that recognizes that. Read more about my approach here.