Back in early 2018 was the first time I started to experience symptoms of being quite ill. The things that happened to me were nothing like anything I had ever experienced in my entire life. At that time I was 47 years old. The very first symptom I experienced was heart palpitations, air hunger, and a dry cough that went on for weeks. I saw my primary doctor, received no answers, and had my symptoms completely disregarded aside from giving me an EKG and told "drink more water." Next symptoms were anemia, acid reflux, severe abdominal bloating (looking like I was 6 months pregnant 90% of the day) on top of the heart palps and cough. Went back to primary doctor, received no answers, and had my symptoms completely disregarded aside from "take tums and iron." There was never any effort to find out why my health was suddenly changing. I even questioned if I was in perimenopause but was told I was too young for that and according to my doctor "those aren't symptoms of perimenopause. Hot flashes, low libido, dry vagina are symptoms."
In September 2018 when bloating started to include constant flatulence, pain in chest radiating down left arm, and tingling in left hand, I returned to my primary doctor. She sent me to a cardiologist who disregarded my symptoms aside from saying "we could put you on beta blockers and see if that helps." There was no effort to find the underlying cause of anything I was experiencing.
Mid October 2018 I was cleaning house when suddenly I experienced a sharp stabbing pain in my lower right abdomen. It was so intense I dropped to the floor. I thought maybe it was an appendicitis but both my sister and mother had their appendixes out and the only symptoms I shared with them was that sudden pain and nothing else. For several days following, the pain would come in waves. This was now added to the acid reflux, bloating, flatulence, pain in chest and left arm, tingling in hand, and heart palpitations and cough that would come and go. I downplayed everything as having to do with aging even though perimenopause was disregarded by my doctor. I stopped ignoring my symptoms when a week later I woke up in the middle of the night with what I thought was the stomach flu except it wasn't just severe nausea, it also came with horrific stomach burning. It wasn't the flu. Over the next few days I tried eating lots of yogurt and a bland diet but the feelings didn't go away. I made the mistake of asking Dr. Google what was wrong with me.
Dr. Google told me I had ovarian cancer!!
Since my grandmother died of ovarian cancer that information sent me straight back to the doctor to ask for an abdominal ultrasound. She laughed and told me to calm down. After listening to my symptoms she decided maybe I had a kidney stone and ordered an X-ray. When that came back clear aside from it showing a ton of air in my colon, she then handed me a prescription of lexapro (an antidepressant) and said that since she had seen me 2 other times in her office over the past six months that she believed I had health anxiety because of my mother having a heart attack and grandmother dying of cancer. I insisted she was mistaken and that there was something seriously wrong with me and I begged "could you please just do an ultrasound." Nope. She wouldn't. So I insisted she do a pelvic exam. She was openly annoyed with me but reluctantly agreed and then says "I do feel something but it could be a fibroid." Yet she still wouldn't do an ultrasound. I left in pain and afraid. I tossed the script for lexapro in the trash.
I made an appointment with my sister's doctor and he agreed to order the ultrasound. For good measure he also ordered a mammogram since it was due. Both tests came back clear. He diagnosed me with gastritis and told me it was probably caused by health anxiety and he too tried to prescribe lexapro. Ugh! I bought into the gastritis diagnosis since I had been under a lot of stress in the past few years but I didn't suffer from health anxiety so I refused to accept the lexapro! He told me to go home, eat a lot of fruits and vegetables, drink lots of water. I did as he instructed and I continued to get much worse. So he prescribed Zantac. It didn't help and symptoms were increasing. I started getting total right side abdominal pain, severe acid reflux, horrid nausea, dizziness, brain fog, hair falling out, and I lost the ability to have a bowel movement. So he prescribed Prilosec (omeprazole ppi) and then my health took an even bigger nose-dive.
On omeprazole the area over my ileocecal valve (lower right abdomen) looked like I had an egg under my skin, it was constantly swollen and when I'd press it would gurgle like it was full of air but as soon as I'd let go it would fill right up again and boy was it painful. The entire lower right side of my body felt like I was being stabbed with a knife constantly. That area from my hip to my liver was in chronic pain. My whole abdomen made noises all day, loud enough that people across the room could hear. The brain fog was intense, I developed tinnitus, my vision was worsening, food would make a full transit through my body in 6-9 hours and come out undigested. The scariest symptom of all was I was rapidly losing weight. Between October 28 and end of December I lost 25 lbs. I was misdiagnosed with IBS, Gastritis, a stomach ulcer. When I started having hour long panic attacks and my research led me to finding out it was the omeprazole, even though the doctor denied it, I took myself off.
I ended up jumping doctor to doctor looking for help. Each doctor would run tests, in total I had a colonoscopy, endoscopy, anorectal manometry, multiple X-rays, multiple CT scans, numerous urine and blood tests, all of which produced no answers. I was wasting away, living off of bone broth, sunflower seeds, cucumbers, and oatmeal. Thankfully at one point a nutritionist gave me the physicians elemental diet to help me stop the weight loss and get nutrients back into my body. At one point I ended up at the Mayo Clinic. In 8 months I saw 14 different medical professionals ranging from gastroenterologists, general practitioners, surgeons, family medicine doctors, functional medical doctors, naturopathic doctors, and even 2 psychiatrists. Most of them disregarded my symptoms as health anxiety and wanted me to take an antidepressant or just go away. The ones that didn't think it was health anxiety gave up on figuring out what was wrong with me (excluding the surgeons and naturopaths). The doctor at Mayo even suggested I was deliberately starving myself.
The most difficult part to explain through all of this to my friends, family, and doctors was yes, I am anxious but I didn't start out that way. I wasn't a hypochondriac. I am the girl that suffers for weeks or months before I go to the doctor. When I was first diagnosed with hashimotos back in 2015 I had suffered with symptoms for years before I finally decided to get checked out. I'm a fantastic excuse maker. I told myself that the changes in my body were from stress and age long before I decided I'd better get examined. I wasn't anxious about the symptoms and didn't even become concerned until they impacted my quality of life and the anxiety crept in when the doctors started gaslighting me when I knew damn well that something was wrong me.
After being medically gaslit and being left mostly bed-bound from pain for months I was finally diagnosed by a surgeon with nephroptosis and a naturopathic doctor diagnosed me with small intestinal bacterial overgrowth (SIBO). I had to do my own research by digging through medical journals to find symptoms that fit mine in order to find someone to help me. I fortunately found a surgeon in the state of Michigan who had me come out as soon as he received my email explaining my symptoms. Once the SIBO was treated to a point that I was strong enough to handle the operation I had kidney surgery (nephropexy) in August 2018. I was convinced the kidney fell into my pelvis and caused the SIBO so I was hopeful once I had surgery I'd make a full recovery and get my life back. I was wrong.
From June 2019-December 2022 I remained under the care of the naturopathic physician that diagnosed me and treated the SIBO (multiple times). I thought he was my savior but turned out he failed me too. Over those years each time SIBO was treated it would return. I was never able to gain my weight back or return to eating a wide variety of foods. I lived strictly on the Simple Carbohydrate Diet to keep the diarrhea, bloating, and pain away. I would question the naturopathic doctor many times about why I never seem to get back to eating more foods or gaining weight, a question he'd always ignore. In summer 2022 I started mentioning to him that I had constant mucus in my throat and by November it felt like I was swallowing a rock. He didn't offer anything new. In December 2022 the heartburn started, I was having abdominal pain, gas, diarrhea, and food sensitivities against so end of the month I ended up getting an endoscopy and was diagnosed with grade c esophagitis. I was in shock! All that time instead of getting better I had actually gotten worse. I was losing weight rapidly AGAIN and dropped from 118 lbs to 106 lbs. The naturopath started gaslighting me. Downplaying the severity of my symptoms. Honestly, he was making it obvious he didn't want anything to do with me anymore. He had me misdiagnosed for years and now he obviously wanted to jump ship.
I went to my new primary doctor who was actually someone I knew and thought I could trust only to have her gaslight me also. I'm standing before her wasting away and in tears and she had the nerve to say it was anxiety. It was deja vu all over again. I tried to explain the hives I was getting on my hands from water and how the water tastes like I swallowed some harsh synthetic chemical and she just looked at me like I was insane. So... I did what anyone who is constantly gaslit does. I agreed AGAIN to see a psychiatrist just like I had four years before, but this doctor said "oh no, you don't need to see a psychiatrist, I can prescribe something for you." I ignored that and sought out a psychiatrist on my own.
I ended up seeing a psychiatrist who has a stellar reputation and a lot of experience in my state. After sitting down with him he determined my anxiety is purely a result of being ignored by doctors. He offered to speak to any doctor that gaslights me in the future. I instantly messaged my primary doctor to let her know that he was willing to speak to her and she never responded. She later messaged me about something else I had mentioned in my message but completely skipped over the part about the psychiatrist. That told me all I needed to know about her.
So I'm back to square one with my health. Tomorrow I get another endoscopy to see if I'm healing or getting worse. Three weeks after the endoscopy I am scheduled to see a doctor that came highly recommended. She apparently works with complex cases and I am really holding out hope she can help me.
So far I know I have SIBO again, low beneficial bacteria in my gut, and acid reflux induced esophagitis. None of those three are causes, they are symptoms of something else. To cure them an underlying cause must be found. To this day I've not received a definitive diagnosis, treatment, or even a small explanation for what I'm experiencing. If the doctor I see later in May has answers I will be back to announce what those are in hopes it will help anyone else going through the same thing.
*****
Medical gaslighting is a term "used to describe a type of manipulation that is designed to make another person doubt their own judgement or question their reality. "Medical gaslighting" describes the experience of having a medical concern dismissed or arbitrarily attributed to a psychological or neutral cause by a healthcare provider."
Medical gaslighting, like social gaslighting, is a form of emotional abuse. It is traumatizing for patients, causing confusion, self-doubt, and helplessness, which, ironically, can lead to anxiety and depression.
My symptoms through all of this have been:
enlarged spleen, random swelling of lymph nodes in neck, abscess in throat that came and went after 2 weeks, mouth sores that come at random and go away after about a week or two, electric shocks in my eyes or back that hit at random, hair loss that goes on for months then stops and regrows thick and then starts again, hives that appear at random, itchy legs on and off that I scratch til they bleed, vertigo, plugged ear sensation, tinnitus, dental pain, nausea like morning sickness, acid reflux, esophageal spasms, gurgling throughout abdomen, pain and swelling over ileocecal valve, typical IBS type symptoms (IBS M), sharp pains that hit in the abdomen at random that makes me scream in pain, reactions to water at random, water tasting like hairspray, extreme sensitivities to food, air trapped in stomach (can't burp), joint pain, interstitial cystitis, insomnia, shoulder pain that radiates down arm, phantom cramping, lower back pain making it difficult to bend over, middle back pain, chronic right sided abdominal pain from hip to liver, tons of air in abdomen 24/7, severe weight loss.
^But apparently all of that is caused by health anxiety and no cause for concern. 😖 It's a terrible, terrible feeling to be optimistic about seeing a doctor you believe will diagnose and treat whatever condition you have to ultimately just have them look at you like you're crazy and hand you an antidepressant. If you've never experienced such a thing I hope you never will.
I once saw a doctor about the weight loss. It was after losing 7 lbs in a week and discovering I fit into a size 00 pants (after being a size 8 just a couple months before). At my appointment the nurse checking me in said she needed to get the children's blood pressure cuff to take my bp because my arms were so small. I was horrified. I knew if I couldn't eat I'd die. When the doctor came in and I told her what was happening to me she suggested I eat a donut or two, then kinda laughed. At the time I wanted to ask her "if I can't eat 99% of fruits and veggies, what makes you think I can eat a donut? Are you truly suggesting I eat junk food to get better?" But I didn't ask that because I'm not a fool. I know who has the power at medical appointments. If we advocate for ourselves too forcefully they'll label us crazy or worse, have us removed from the property by security. If we sound too snarky or annoyed we could end up being banned for good from the clinic.
Every time I've gone to the doctor in the last 4 years I've been desperate for answers so the last thing I want to do is piss off the person I am begging to help me, but it seems it doesn't take much to trigger a doctor. Just disagreeing with their assessment makes them angry or annoyed. When a doctor decides our symptoms are psychosomatic there is little we can do to change their mind. The trust between doctor and patient is essentially gone at that point and it's time to move on. I've had to move on a lot. 😔
BTW/I'd love a donut. I miss the nutty long John from Tobey's in Hinckley, MN. If I could eat a dozen right now I would. I also miss cherry cheesecake A LOT!!!!
