Getting misdiagnosed – Why we schould learn to listen to our bodies

This topic is one that breaks my heart and makes me so angry until today. I can say by now that I genuinely do not trust Doctors and I have to deal with panic attacks just thinking about gynecologists, which is very unpractical as a woman. How did it get so far you ask? Well, let me tell start at the beginning.

The story of constant misdiagnoses starts with my accident I had in 2002, 6 years old and my life decided it would be so fun to be kicked by a horse. DOn’t get me wrong it was my own fault, I was not walking fast enough next to the horse and ended up behind it, so it, of course, got startled. I love horses like all other animals until today and my mom made sure I sat on a horse again the moment I got out of the hospital. I ended up with a spleen rupture, a squashed pancreas, and inner bleedings. Everyone who watched Grey’s anatomy knows exactly how it looks when they first try a minimally invasive surgery to then end up cutting you open fully. I can just imagine the stress those surgeons must’ve had trying to save this little girl, whose body was torn between bleeding out and fighting for life and I can just imagine how my family must’ve felt waiting outside not knowing what happens inside the operation room. In the end, as you can see I obviously survived and I am by now kinda fine.

My pancreas thinks until today that it’s fun to play bitchy teenager whenever I eat too much of too greasy good because life would be empty without being reminded you have a pancreas that still likes to play the victim. I ended up with stomach pain after the surgery, but due to growing up in a problematic family – isn’t this a nice way to describe a fucked up family? -it was always said it’s stress, especially since the ultrasounds to check after my surgery didn’t show anything. Am I the only person on this earth that could throw up every time she hears that something is due to stress? Especially since it’s a mainly female phenomenon.
Anyway, with 13 or 14 I was allowed to enter the hell of being a woman, don’t get me wrong, having a menstruation itself is just party shit – let’s be honest, who enjoys bleeding every month besides those girls that are afraid they are pregnant? – but for me it was hell! And I mean pain so strong my Gyn at some point put it at the same level of contractions, now you Mamas might say that’s doable but you are wrong. I mean I also believe it’s doable once I actually have contractions and I have a baby trying to widen my cervix but if your a teenager, NOT pregnant and all your organs hurt like hell and your back is of course joining, NOPE! So, we tried something natural, which ended up making it worse, then we had the theory of me having a lot of really small cysts since they found a cyst on one of my ovaries, so I started with the birth control, one specifically against cysts. Who wants to guess what happened? Guessed it didn’t help? Congratulations! You are right! I still kept taking it since it didn’t make it worse and I did have a cyst, so why not? Besides that pill, I kept popping painkillers like tic tacs, which resulted in me ending up immune against a certain type of painkillers and it took me till last year to have a fever again – no one was ever that happy to have a fever, I swear-.

At some point, my Gyn looked at me very serious and decided to drop the bomb that she thinks I have endometriosis. I didn’t quite grasp it back then, I mean I was like 18 but my mom got the biggest shock of her life and after learning about it I couldn’t believe it. I mean are you kidding me?! Hashimoto’s AND endometriosis?! So, I got referred to a special endometriosis clinic in Berlin, which I can just tell you not to go to. It was awful and it made me fear Gynecologists. We had this Doctor in her 30s sitting and I felt so hopeful to finally get answers and be able to manage this awful pain I had since ~4 years – if you count 1 + 1 together, you realize I basically had it since 12 years -. I endured the most horrible ultrasound I ever had, you girls think it’s uncomfortable for you? For me, it was the most excruciating pain ever, every single time but my Gyn at least tried to make it short and as manageable as possible – this young woman, who should be so understanding and empathetic didn’t care about my pain and the tears that I shed silently. And she even had the nerves to tell me completely emotionless that she doesn’t think I have endometriosis – yaaaay! – and she can’t help me, answering my mom’s question what she then thinks I should do about the pain, that I should keep popping painkillers. I was 18! That would’ve meant goodbye to my liver with like 30. Thanks. Well, that ended in me breaking down crying on the subway on our way home and a trauma when it comes to Gyns.

Child dressed as a surgeon as a representative to the misdiagnoses by real Doctors.

It also made me later want to fight and find out what it is and through a hint of fate I ended up researching adhesions, asking my Gyn about it she didn’t believe that’s the reason, same answer by my Doc after doing an ultrasound me since I had such abdominal pain my mom thought that it was my appendix – which it, of course, wasn’t, that would’ve been too easy -. Well, asking our great neighbor, who is a nurse, she said she does believe it could be adhesions and I should see a specialist and I did. I went to the St. Josephs hospital in Berlin and had a wonderful appointment with a Doc there. She listened to my story 5 minutes completely shocked I needed 13 years (!) to finally end up there. We scheduled a surgery for 2 weeks later, categorized as urgent and even though she said she wouldn’t need to do it to confirm the diagnosis, she still did an ultrasound. 2 seconds and her first reaction was “Do you know your uterus is too much on the left side?”. No?! Well, hello answers! You can’t believe how happy I was afterwards. 2 weeks later I ended up with a life-changing surgery, they ended up needing 1 1/2 hours instead of just 30 – 45 minutes. They also got rid of the cyst but the shocking news was to hear how bad all this really was. My left ovary was full of adhesions, which pulled my whole uterus to the left. My uterus was grown together with the net, my bowels were all the way up and connected with my spleen but even though it was a mess they didn’t have to take out the net as we feared in the beginning. To all those not knowing what the net is, it’s literally a net out of fat that’s on top of your organs protecting them against infections and with that really helpful for the immune system, especially if you have one being too busy destroying its host’s body.
So, adhesions was the answer and I am so thankful for the surgery, because since then the pain is not even comparable and I can use roughly 6 – 7 months a year use a hot water bag, the rest of the year I’m the hot water bag, because it’s 35 – 45°C.

I still can’t believe no Doctor ever said anything in those 13 years, with the history of a big stomach surgery, latest when seeing this huge ass scar during an ultrasound it should’ve been one of the first thoughts but then I remember the ignorant treatment of my Hashimoto’s for 9 years, which is the next part of this story. If you don’t know what Hashimoto’s thyroiditis is I have a blog post about it, click hereto read it.

It ironically also starts with me being like 12 or 13 years old. I had a blood test done that given the Doc back then was completely fine – we all know where this one is going – but my mom got into a conversation about the blood test and me with one of our neighbors, which happened to be a former Professor for inner medicine – and also the mother-in-law of the neighbor, who is a nurse – and she said she wants to see the result of the blood test ASAP. I don’t know what my mom exactly told her but probably that I gained quite some weight without knowing how, how lethargic, tired and unmotivated I was, my hair started to get thinner, that’s all I can think of though.
Well, I ended up bringing her the result and she was shocked – looking at those results now I am, too – and referred me to one of her former students, so we went. She ordered another blood test, which showed what was to be expected, the TSH was over 5 (for a normal person it should be between 2 and 3, for someone with Hashimoto’s between 1 and 2 even tho most feel better with one less than 1) and the level of the antibodies was also through the roof. She also did a thyroid sonography just supporting what was already suspected. The middle part of my thyroid gland is non-existent, so Hashimoto’s it was, as nice as she was – she even showed me her thyroid gland on an ultrasound to be able to see how mine should basically look like-.
She explained what Hashimoto’s was and that I would start taking thyroxin supplements but that was it. We didn’t talk about vitamin deficiency since malnutrition is common for people with Hashimoto’s, they – it was a shared office and I saw whoever was available, which was fine since they were all very nice actually- never told me to not take the supplements 24h before the blood tests since it artificially pushes the TF4 level up or that it can help to take the supplements at night since some people get tired from them.

Syringes and pills.

I ended up sleepwalking through my life for 9 years, they didn’t even tell me to scratch iodine from my diet! I fell regularly asleep during classes in school or at uni, I fell asleep on the bus on my to school and back home and at home I would nap because when this kind of tiredness hits me I just can’t keep awake. Until today I struggle with fatigue even though way less than before, which means a day in bed, because even the walk to the bathroom exhausts me and I still deal sometimes with severe joint and muscle pain, which luckily also went down and I know at least partly what triggers it. I had to learn the hard way that extreme stress at some point triggers another Hashimoto phase, which ended in me nearly doubling my dosage but also in a wrong treatment, which was even accepted by my internist here and I had to learn 1 1/2 years later how harmful it is for the organs. I ended up taking 100mg levothyroxine 4 days a week and 75mg for 3 days, well that can and does – which makes sense – destroy the organs, because they can’t deal with that different dosage of hormones every day especially this extreme, with a 25mg difference. I am waiting now till my next blood test end of this month before probably highering to 100mg completely. You also have to get the blood test done every 3 – 6 months, which also no one ever cared to tell me and I got them done once a year.

Why do Doctors feel so godly that they think what they learned 30 years ago is still valid? That they don’t listen to their patients? I know my body better than any Doctor ever will even though more and more are disconnected from their bodies doesn’t mean all of us are. And why is it that nobody talks about sexism (and racism) in medicine? And for all those rolling their eyes now, if you are a man you lost the right to roll your eyes the moment you got a y chromosome instead of a second x. It is proven that women are more seen as whiny, so their pain is taken less seriously and instead of diagnosing them now as hysterically, they diagnose stress, because women are always stressed, right? My whole take on feminism and needed feminism in medicine can be read here.

I just can’t keep stressing enough how lucky I am that I learned to listen to my body, that I rust my intuition and if I have to research things on my own, understanding medicine enough to not get intimidated by a Doc throwing around big latin words and that I learned to advocate for myself.

If you read this far you are probably asking yourself why I decided to tell this story and ramble for such a long time, well the answer is pretty simple. I hope that a few will read this and realize that maybe not their feeling is wrong but their Doc. That people start to realize again how important it is to listen to our bodies because nobody knows better than our bodies and if we can’t listen to it how can we demand someone else doing that? All those people knowing something is wrong, demand to be listened to, demand to be taken seriously and demand getting treated till you do. Fight and advocate for yourself, because you can’t expect anybody else doing it for you. It is a difficult fight and it is tiring and frustrating and angering and you’ll have to do it over and over again but it is worth it in the end, so start fighting and keep going.

If you experienced a misdiagnosis yourself please share your story in the comments!

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