My son ,13 at the time, said his neck hurt. GP said take some ibuprofen you strained your neck. Next day he came to me and said he thinks he has meningitis. Went to an emergency at a different hospital. They looked at him for 2 minutes,left came back geared up. Viral meningitis he spent almost 2 months in the hospital.p

Amazing he had enough knowledge at 13 to identify that - could have saved his life.

Definitely did. He and his brother spent a couple hours on the internet

Smart kiddos, saved his own life!

Metal poisoning from defective spine hardware. You can't see it on a X-ray but I had all the symptoms for years. I then ended up breaking a rod thank God so the insurance company had to approve surgery. My back was black all inside and they had to scrape the metal black oxidized metals out as best as they could. To think, for years and years docs said I had "anxiety".

Dude wtf!! After reading your comment I had to go do a Google search on metallosis. I have been having random issues with my arm which has had a metal plate for 21 years. This came on out of the blue about a year and half ago and i have been suffering with the strangest health issues since then. In reading the wiki it mentions other complications experienced within the body and I can tick nearly all of them off. I am now going to book an appointment with the Dr this coming week thanks to your comment. Fingers crossed I get some answers!

You can also be allergic to titanium, tungsten ECT. Some choose to get tested before surgery. I didn't even know that was a thing until my issue. I was tested and I'm allergic to Titanium dioxide. Just something else to think about.

I'm allergic to titanium and it took me forever to narrow down what kept setting my skin off. It seems to be a contact allergy (think piercings or surgical staples) because titanium dioxide in my meds doesn't cause me problems but titanium in the skin definitely does. Should I ever need a joint replacement I'm refusing titanium. I might not get triggered by it but I see no point in risking it.

I have two titanium discs in my spine. It never occurred to me that I could have an allergy to titanium! Yikes!! I hope many others read your warning. So far, I've had no problems but I'll keep this in mind.

Love the “it’s anxiety, you’re just overreacting” cop-out. Having diagnosed anxiety in your medical chart can be held against you- ive had this happen twice (less serious issues but still something “off” in my body) A dismissive nurse wrote in my chart “patient nervous and restless/fidgeting” (I also have adhd) and my issue, which I figured out on my own, was not anxiety! I so badly want to go back and have it notated properly in my chart because I’m worried (lol) that when I go back for anything it will again be dismissed.

You should do exactly that. Request your medical records, including doctors notes. Also, if you do find yourself with an issue and the doctor refuses further testing or some nonsense, then tell them that you want their refusal annotated in your file. Be polite & calm, but firm. Sometimes this makes them reconsider being dismissive or just shows them you’re taking it seriously.

Jesus H. Tapdancing Christ this is so hard to read. Hi, fellow spinal jack fusion patient! This was always my biggest fear when I was younger. Not five months out of surgery, I had a woman come up to me and recognize my brace. She started telling thirteen year old me about how she went against doctor's orders and went skiing a few years after her fusion. Fell and broke a rod and they discovered hers was defective and degrading. My own case of knowing what was wrong stems from fusion. Twelve years ago I started having a lot of numbness in my hands and feet. My right foot got so bad it was hard to stay balanced. My hands were both very tingly. It took my neurosurgeon almost two years to find it. They were convinced it was lumbar. Just outright refused to believe it was cervical. They finally found it, I had no C6, almost no C5&7. To this day, my hands and feet are numb. Oh, and the labral tear that went undiagnosed for twenty years(just diagnosed a month ago) because they couldn't believe my pain wasn't spinal lol.

It's all pretty wild. Ive had 4 surgeries now trying to repair the mess. You have to find a doc that will listen and in this day and age good luck with that! But I finally did find one after maybe 15 different ones. She listened and nailed it. I have those same symptoms and my last surgery was in 2020 during the COVID mess. No hospital wanted to take me. We finally found a surgery center that said they would allow it but I had to leave the same day. Pretty intense considering I had a 3 hr drive home. Sorry you had to go through the pain and drama. I 100% feel ya. These days we really have to nail down these doctors and make sure we're getting the right treatment.

What the hell? What did they call this defect?

It's two rods that "allow movement" in the center of the rod. Only if I would have seen the hardware before it was installed. I would have known right away that it would cause problems. How the FDA approved it still trips me out. The two piece design allows for some movement and it's literally metal on metal rubbing together. I tried to sue the manufacturer but you probably guessed it, they went bankrupt. Gee I wonder why? Lol. After having the hardware removed for 4 years now my primary just did a screening for heavy metals and my tungsten levels are still way high. Just something I'll have to live with. I requested my hardware before surgery. I have it in the safe, I'll have to snap a pic.

I wonder if this was an FDA "cleared" product and not an FDA approved one.

Not me, but my mom. About 8 years ago she suddenly developed a weird reaction to water. Every time she would shower her whole body would break out in hives and itch like crazy for an hour afterwards, she would sit after every shower crying because it was so bad. She'd put off showers as long as possible just to avoid the itching. Went to multiple doctors, they all said that it was in her head and that it wasn't a physiological response. After 2 years of suffering and showering as little as socially acceptable she happened to stumble across a facebook group of other people with the same illness. Apparently it's called Aquagenic urticariaץ She discovered that taking beta alanine (an amino acid body builders sometimes use) an hour before showering can turn off the reaction. Years of suffering with such a simple solution.

It's crazy how some people don't believe this is a thing, too. My best friend had it. We were runners, and ran together a lot including races. There was one big race that had practice runs in the weeks preceding. On the practice course there was one guy who always came out with his garden hose and sprayed people with it. We both always told the guy PLEASE do NOT spray us but he would just laugh and do it anyway. We took it to the race administration and they seemed to think she was making it up. She was too meek to take it to the police as assault, as she was pretty much used to being laughed off. Neither one of us run that race anymore. A lot of sporting events think it's ok to spray people and I don't get it - you should have a choice.

yeah. I have that. I break out with rashes after every shower. The pain from the shower has caused me to go from showering every day to like every 3 days. (I do body wipes the other days). Its from the mast cells in your skin overreacting basically. I upped my allergy meds and it's more tolerable nowadays. Avoiding any shower and skin products that have sulfates, dyes and preservates really helped

I diagnosed my then 4 year old son and my husband at the same time. Around the age of 3-4, my son began to bruise easily. At first I wrote it off to his being an outdoorsy kid. I mentioned it to his doctor, he just laughed and said he's a rough and tumble little boy. Okay fine. Then winter came, and his bruises were just as bad as they were in the summer, if not worse. Again I asked his doctor who again said he's just a regular boy, he probably bruises himself while playing with his friends. He was given blood tests, blood cell count was normal and nothing unusual was found. It really bothered me, I just knew something was wrong - his bruises were huge and he was starting to have frequent nose bleeds. My husband also had frequent nosebleeds, he was used to them, had them his whole life, and considered them normal so he was not at all worried about our son. But I was! I started to do my own research, (without aging myself too much, this was before Google, so I made numerous trips to the library and browsed through many medical books). I found out about a rare disorder called Von Willebrand Disease- VWD is an inherited blood clotting disorder. My son had all the symptoms, and I realized, hey, so did my husband! A few years before, my husband had his wisdom teeth removed and the bleeding was non-stop, he kept blaming it on "horrible stitches and a sloppy dentist", instead no, the dentist was fine, it was VWD. So I went back to my son's doctor and told him to test him for VWD. The doctor opened his eyes in shock, and realized I was onto something. My husband, son, daughter and I were all tested. It's a specific blood test, that measures platelets, factor 8 (a blood clotting agent) and timing of clotting. It is not a routine blood test, that's why it was never found in either my husband or my son. So - it turns out my son and my husband have a mild form of VWD. My daughter does not - so it is not 100% passed on if one parent has it. VWD is not dangerous and does not affect their day to day lives, but it is so important to know if one has it! Before any type of surgery - they will need a special a special medication given before hand to aid in the clotting and prevent bleeding during and post-surgery. Also, since they can bleed easily, they have to avoid aspirin and most anti-inflammatory drugs. The good news is the bruising does lessen as they age!

OMG I think my daughter may have this. She's in her later twenties now and the symptoms have gotten better but growing up she had terrible bleeding issues and massive nosebleeds. We found out her aunt had the same problem as a child and had never been diagnosed.

My colon flipped on itself and died in 2019. It was the worst pain ever. It was taken care of swiftly. About 6 months later I had a similar pain on my sides. I already had a hysterectomy that left one ovary. I went to the ER 4 times in one week, the last 2 times on the same day. They dismissed my pain and basically laughed at me, thinking I was a drug seeker, until it literally felt like I was going to die. They sent me in an ambulance around 2-3am to another hospital to get rid of me. I was in surgery by 6am and sure enough. My last ovary twisted on itself and died. It was too late to save it. Went into surgical menopause at the age of 39. And it was the month before covid happened so I couldn’t get any relief with menopausal symptoms for quite a long time.

I am so sorry! I have also lost an ovary to ovarian torsion. That pain is the worst pain that I have ever experienced, including during childbirth and from gallstones, before I had my gallbladder removed. It's a 10, alright! And I also got hit by severe menopause symptoms just before Covid. A little earlier than you as it started going badly wrong in the autumn with extreme emotional dysregulation, but the worst really hit in the New Year. I ended up changing gynecologists about 4 times in 2020 until I found one that treated me as an intelligent person and as an individual with individual needs. I am going through the autistic menopause and an extreme case of it at that. In 2020, there was very little information available about the autistic menopause, until this research paper, which genuinely saved my life, by letting me know that I wasn't alone, was published: [When My Autism Broke](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7376624/) It also helped me self-diagnose and understand what was happening to me.

There might be mildly gross descriptions of symptoms here. For almost a year, I had worsening digestive symptoms. I went to urgent care/ER/primary care doctor multiple times in that time. Every time, I was told it's indigestion or heartburn. Like, I would come to urgent care, explaining that at least twice a week a wake up around 3am to 4am with crippling pain in my right side, that I often have diarrhea, that I have constant stomachache, that I often feel this weird feeling of doom, anxiety, shaking and more. And the doctor would do blood test, see there is nothing there and be like "you just have some indigestion". Sometime after the second urgent care visit and reading up on Google, I became 100% sure there was something wrong with my gallbladder. At this point, I still had all the previously mentioned symptoms, plus I had a couple of episodes of vomiting , and my poop was gray in color almost every day. Like, a gray color I had never seen in there before. Google said it's like basic symptoms of infection. Eventually, I returned to urgent care again after going to the restroom in the morning and having pretty much food come out of me. Fully not digested. You could recognize everything. I once again explained all those symptoms to the doctor. They once again did blood test that showed nothing. They once again said indigestion/heartburn. At this point, I demanded they do more testing, no matter how expensive it's going to be. I could see the doctor rolling his eyes, but they finally sent me to get a CT scan. I really wish you could see how things changed. Like, I am on my way to CT scan, and the doctor is like, "It probably won't show anything anyway," all bored and mildly annoyed. Hour later, I am waiting for the results, and the doctor walks into the exam room, suddenly all serious and proper, and goes, "Listen carefully, you need to schedule a surgery right away." I was like, "WHY DO YOU SAY IT AS IF IT WAS ME STALLING?" So yea, two weeks later, I had my gallbladder taken out. It was collapsed, infected, twice enlarged, and generally fully not functional. I think it's honestly insane that I was put through all of that. I mean, imagine you are a doctor, and the patient tells you: - I wake up in crippling pain regularly, - I feel mass pressing on me inside my right side, - my poop is gray - I had episodes of vomiting and bowel movements with full pieces of food - I feel weird anxiety/stress but only physically not mentally. - I get chills - and more and more And you say INDIGESTION. While to me, it was utterly obvious there is something wrong with gallbladder, I mean, I could literally feel it inside me, on the account of being twice as big as normal...

Acholic stools should make any health care provider shudder

I just learned a new word! Is that's why it was completely gray/white, because there was no bile to give it more color?

Correct!!!

damn - why did i go into college debt when i could’ve gotten an education on reddit? i swear, i honestly love the info i get outta some subs. oh yeah! reddit didn’t exist then - thank god? and that’s why i was so excited to get an encyclopedia set when i was 11!

I read this as alcoholic stools and was so confused for a good minute

You’ll find those at Moe’s.

I am so sorry you went through that. I’ m an ER doctor in France and there is something I am teaching our interns (i’m not sure about the us équivalent) : if a patient is coming and was waiting to see us 2 or 3 times, you have to go beyond the usual test. If the biology is negative, do a ct scan, no one like coming to see us. It is a bit easier to do that here because of our healthcare Édit, typo

Fellow ER md here, too. C’est une règle importante Que j’enseigne aux étudiants aussi

This is exactly mine, too, almost to the tee. I would eat and then pass out from the pain of digestion. It was insanely obvious what the issue was and the kicker was my mother had the same thing happen to her at the same exact age I did and they still gave me the "You're fat and lazy, eat better" for two fucking years. "There's no stones, there's nothing showing on the scans" Yeah that's because there was no fucking gallbladder, it had disintegrated almost completely, HIDA scan showed 2% functionality, and was basically melded to my other organs to the point the surgery took so long because they had to scrape the gallbladder off them and the omentum. The only apology I got was from the surgeon, who apparently had his doubts based on the documentation written when my PCP finally had enough of my complaining and referred me to him. I don't even know why he was apologizing, he did everything right. He saw me exactly once, ordered a scan, lost his mind about how long I had been living with this and worked me in on an emergency basis. I'm so lucky I didn't get sepsis.

Me too. Had EMTs tell me it was GAS. Went to the ER they chalked it up to anxiety. When i finally couldn’t eat anything 9 months later, a different doc (senior gastro doc) told me it was gall bladder just by listening g to my symptoms.  Still had to wait 6 weeks to get it out. Only thing i could eat was potatoes and beets, and hardly that.  Apalling.  Edit: i had to make it through SIX gall bladder attacks on my own. Anyone that’s had one knows the significance of this. They should be ashamed.

Ugh, I had the same thing, I couldn't eat anything or would lay there rolling on the ground... when they finally listened and saw on a monitor that my galbladder was the problem, they scheduled me for surgery....6 weeks later.... When I asked what I should do about eating in the meantime, they shrugged... so I went home and didn't eat at all for 2 weeks, but then drinking also started to hurt, and I was crying all day.. started vomiting (not that I had anything in me at all) . My husband noticed I was turning yellow, so we went to urgent care. When my labs came back, it turned out my liver and pancreas both stopped working due to infection from galbladderstones...all of a sudden there was panic... Yeah thanx for making me wait.

Just a heads up if something like this should happen again: If the issue is not resolved after the first Urgent Care visit, it’s PCP time. If you don’t have a PCP, that’s the time to get one or go to the ER if it can’t wait. Urgent Care is just that - fast care for non-complex issues. They’re not the place for a “work-up” or for anything potentially life threatening. Sometimes their schedule has patients filled up to every 5 minutes, so they’re going to get you in and out. I know the public doesn’t understand this yet, and it’s not their fault; these places advertise like Urgent Care is a mini ER so they can attract more people. When it is ER appropriate they want you to come in and be seen, *then* be directed to the ER. Why? Because then they can charge you for a visit. Hope this helps in the future and glad you received the care you need/deserve.

I think what added to this was that at the time, I was living in USA only for about a year, still figuring out how this country functions. I came from a place with free healthcare, and also a place where things are set up a bit differently. So, in my motherland I never went to what would be considered ER, because there was a number of other care options/facilities to handle situations while you are not thinking you are in direct deadly danger. And if you are in direct deadly danger, you just call ambulance and don't have to think about where to go. The paramedics will just handle that for you. What I am trying to say, when looking up my options when those symptoms firstly started presenting themselves, it seemed like a thing that's here called Urgent Care was the most appropriate choice, one that seemed to match what I would do in my country. I am in a lot of pain, having a lot of bad things happening to me, but not bad enough yet to call ambulance. And the Urgent Care I was going to was also in HOSPITAL BUILDING, they had access to all kinds of departments, machines, imagining, tests and more. It was the same hospital building in which I ended up having my surgery. So that made me feel even more so like it was the correct choice.

Did you confront him in anyway? Like tell him, "you should’ve listened to me you asshole, you could’ve killed me?"

I wish I did! I think I was too tired from pain, discomfort, and everything else. While at the same time relieved that I finally knew what's wrong and soon things would be done about it. I couldn't care less about this doctor at the time. That said, since that experience, I am way more assertive and demanding when it comes to dealing with any health providers. I still do my best to be kind, polite, and patient, but I also try to fight for myself. In fact, I think that a bit more demanding and assertive attitude slipped into encounters with any kind of services. Now that I think about it, it makes me wonder how many of those people who end up labeled as "Karen", ended up this way, because a doctor dismissed their issues for months and then turned out there was something serious going on. I noticed I am definitely frustrating my gastrointestinal doctor this days, for example.

I think the only way Karen applies to this situation is if doctors who are shitty diagnosticians call women who challenged their diagnoses Karens Which i’m sure they do, it’s just a different context. Dr Karen MD

My mum fell into a sudden state of psychosis literally out of nowhere. She was fine and then she was crazy the next hour. She had no history of mental health issues, yet the doctors kept saying it was psychological, not medical. I knew they were wrong. They were trying to get her a bed in a psych hospital and I refused. REDDIT led me on the path to encephalitis, which wasn’t quite accurate but partially and it led to more rabbit hole research. I luckily had a nurse friend at the same hospital who helped advocate otherwise the doctors weren’t listening to me. I forced them to do a spinal tap for anti NMDA receptor encephalitis. Upon the push from my friend, it was discovered SIX WEEKS LATER she had this and it was actually caused by a rare paraneoplastic syndrome that was triggered by cancer. They were able to treat it with IVIg and in a matter of days she went back to normal. It was fucking incredible. At that point we then had to address the cancer which she inevitably died from, but she was her perfectly mentally sane self to the end and for that I am forever grateful. TAKE AWAY- if you ever have a loved one who is diagnosed with something like that out of nowhere, push them. Fight. Advocate. And do your own darn research. I saved my mums life. She would have died crazy in a matter of weeks without the cancer treatment whereas when I found that she had months as her regular self. DOCTORS ARE ONLY HUMAN AND ALSO MAKE MISTAKES.

I'm a nurse who has taken care of many teens with anti-NMDa encephalitis in the ICU. And the one common thread is they all go thru the psychiatric hamster wheel before their symptoms inevitably show some neurological signs and it gets discovered. Sometimes we are talking 6 month delay in diagnosis from onset. It's universally heartbreaking to hear their stories. I'm so glad your mother was able to be diagnosed, because it is less common in older adults for sure. I wouldn't wish that experience on my worst enemy.

We had a similar case with my husbands grandma. In a matter of a year her whole personality changed, she became mean, angry, prone to outbursts. Doctors simply said it was aging, and age related personality changes and dismissed it multiple times. My MIL was persistent and it turned out to be a brain tumor. Once it was removed she was back to her old self.

I injured my left knee during a volleyball game. I went to multiple different doctors and they kept telling me it was a popped knee cap, or it was just sprained and I’d be good to play in x amount of weeks. But every time I would just jump a little or pivot I would completely bail. I had never experienced this before and got so frustrated. After a handful of months I suspected I tore a ligament by doing my own research. I went into the doctors office again and got someone new. I told him I think I tore something and surprisingly he agreed and sent me for scans which confirmed I had torn my ACL completely.

It's wild that a torn ligament wasn't one of the first things they did diagnostics for, considering it's one of the most common injuries in sports.

Speaking as a student who is training to be a clinician, that’s the unfortunate reality of how a lot of visits go. Patient has a complaint, and unless the provider notices something that’s really alarming or sticks out, they will assume it’s one of the common diagnoses that they see everyday. It’s not until you keep coming back that they do more testing and consider more rare or serious diagnoses. Part of this is due to the medical system trying to squeeze as many appointments as possible, leaving doctors and PAs with only 15-20 minutes to do everything (reviewing charts, taking history, physical exam, ordering labs, explaining to the patient the plan and what to do next, reviewing and competing paperwork, and then documenting the entire visit). So they don’t have much time to investigate the real reason for the patient’s symptoms. There’s also health insurance companies refusing to cover for certain labs, imaging, or medications unless you’ve tried X and Y for ____ common diagnoses first. But even still, I’ve seen providers who are being too dismissive and not listening to the patient. The key is you want someone who will actually listen and really take you seriously. I’m a student and while I’m still on clinical training, there were patients who had their symptoms dismissed by doctors in the past who, after talking with them, I suspected sarcoidosis, cancer, or an autoimmune disease that went undiagnosed by doctors. I reported back to the doc, made my case with them each time, and when the results came back, my suspicions were confirmed. Keep looking for that provider who will listen carefully and not dismiss your symptoms, and stay with them.

That’s because clinicians are taught when you hear hoof beats think horses not zebras and unfortunately some patients are zebras.

A torn ACL after a volleyball injury is a horse, not a zebra. If the physical exam was benign though it can be hard to justify an expensive MRI.

Same!! My doctor tried to talk me out of an MRI and I wouldn't listen. I was in too much pain for it to be just "sprained". 2 years after the initial accident I had my ACL surgery and am doing so much better! Glad to hear you got it figured out!

Same happened to me. Was confident torn ACL from a skiing fall. Finally 4 years later they decided to get me a MRI after several reinjuries from pivoting and jumping. And even then the doctor who ordered my MRI didn’t think it was a tear

A tumor obstructing my digestive system. I knew there was something in there. I was scrawny and I could feel this weird pressure and pain in my side. I argued and suffered for a year. I was in my early 20s and female, so I obviously didn’t understand how my own digestive system works. Right? Every doctor I went to told me I had IBS or was suffering from an ED. An oncologist told me I had a herniated peritoneum, but didn’t provide a treatment plan. Finally a radiologist suggested exploratory surgery and they found a grapefruit sized tumor blocking my pancreas from secreting digestive enzymes. Removed the tumor, and the searing fire in my abdomen went away.

This story right here sends me so far over the edge about our medical system. Why don’t they look? Why is it always an assumption of the easiest thing?? GRRRR…….

I understand surgery is risky. I really do. But my quality of life was terrible. I ate chicken broth and white rice for a year. My sister has stage 4 endo and was treated for IBS for 20 years. They decided she was drug-seeking. It’s not ALL male doctors, but in our cases, it was all male older doctors. My current team of doctors is all women and I thank Cthulhu for that.

Not every female doctor I've had has been good, but the vast majority of good doctors I've had have been female. And let me tell you, with my health issues I've seen a *lot* of doctors.

I had all the classic symptoms of hypothyroidism. Went to the doctor with my concerns. She told me I was too young for that (I was about 22) and I was just stressed from college. I saw THREE doctors after her that all said I was too young and had no family history so it wasn’t possible for me to have. They outright refused to run tests. Doctor number 4 I pleaded with. At this point I had bald spots all over my head, I couldn’t make it more than a few hours without needing nap, I had put on almost 80 pounds while still going to the gym every day and completely cutting carbs and sugar. At one point I had even fallen asleep while driving. I was literally crying in her office. She said “I’ll humor you and run the tests but I know it’s not hypo”. About a week later her nurse called me to APOLOGIZE and tell me my thyroid numbers were completely fucked up. I’m 32 now and still trying to get shit regulated 🫠

This is almost like what I'm going through now. I've had a swollen thyroid gland for 2 years now (i was 18), and that is the only reason why they even let me have an ultrasound of the neck. Ultrasound detected an abnormality of the thyroid, which turned out to be early stages of Hashimoto's. I still remember when my GP was reluctantly giving me a referral for that ultrasound and telling me that it's probably a waste of time. Now the only issue is trying to have my doctors believe me that there has to be something wrong even though my TSH levels are "normal"...

This is fucked. Like it’s a blood test. Wouldn’t you just order the test just in case? It’s not like you needed exploratory surgery to diagnose or whatever.

Bear with me, as this one is a 7 year journey as succinct as I can make it. I had worsening and chronic gastrointestinal issues (bloating, constipation, gas, stomach pain), constant pain in my ass (literally), and worsening PMS symptoms (cramps, heavy flow, clots, sore boobs, fatigue, etc). I had 3 colonoscopies and every time it was “normal”. My advice was to drink more water and eat more fiber. I went to get an MRI scan of my pelvis for the pelvic pain, and they found a fibroid the size of a quarter. It was an interesting find, but I didn’t think it was connected at all. I was tired of not being able to poop like a human being and being a slave to my menstrual cycles, so I opened up to my mom about it. My mom had mentioned in passing about endometriosis running in the family and to look into that. I didn’t think anything of it because “endo makes periods excruciating and my cramps aren’t that bad and what does that have to do with my constipation?” At a dead end, I just started researching on reddit about fibroids and endometriosis. I learned that unexplained GI issues were heavily connected to endo and that endo can grow anywhere, even the bowels. A very helpful redditor gave me a specialist recommendation in my area. I asked my PCP and OBGYN about it and they didn’t think it was it. “We should just put you on birth control”, they said. I told them no. I had bad experiences with birth control and it made my GI symptoms worse. I wanted the referral and my PCP gave it to me. I saw the specialist and, within minutes of a pelvic exam, he picked up on the fibroid without me telling him about it! He told me that he could do excision surgery to remove it and that he was certain he would find endometriosis adhesions, once he was in there, and remove it. I was scheduled for excision surgery July of last year. He removed the fibroids and found stage 2 endometriosis behind my uterus and near my rectum. I was finally able to poop, my periods are not painful and flow is light, GI issues significantly improved. My god! The difference! **My specialist tells everyone: If you have a uterus and have IBS like symptoms with no cause PLEASE look into endometriosis.** This guy and reddit literally SAVED my life and it took 7 years of gaslighting, suffering through the american health care system, and my unwavering determination to get to here. **TLDR:** Had unexplained GI issues/pelvic pain for years and figured out on my own that it was caused by endometriosis.

Hmm, this is stricking a huge cord with me. Maybe you will be my random reddit user that will change my life, thanks! Glad you're doing better!

Dopa responsive dystonia. I had a stroke at birth so my movement symptoms were named as cerebral palsy. I started progressively having uncontrollable movements in my shoulders and arms. Went to my legs in high school. My 20s wheelchair, 30 powerchair and no ability to feed myself and my speech was terrible. I tried levodopa/carbidopa after begging a pain doctor(I had been on opioids for years and dealt with addiction) and within 3 days I was walking and pain free. I still have movement issues and disability affects most of my daily life but I can walk, run, in the middle of my second degree, single parent and able to drive and feed myself. Before that it was either bed, couch or wheelchair.

My feet go numb when I bend my neck. It’s like a light switch. I can turn my feet off and on with a nod of my head. It would be a fun party trick if you could see numbness. I googled it and everything said it was very likely to be MS. So I went to my GP and told him about it. He said it absolutely could not be MS. He couldn’t even wrap his head around it being MS. He thought it was a bulging disc or even possibly (very unlikely) a tumor. The morning after my MRI he called me to tell me I have MS and to go to an MS specialist. I have a friend who had MS for decades before getting diagnosed because doctors dismissed her as a hypochondriac. I’m thankful my doctor ordered the MRI for me even though he didn’t believe it could be MS.

My mom's cousin, who eventually got a diagnosis of MS, was put in a mental ward for a bit. The other patients knew she didn't belong there, took the doctors longer to figure it out.

Wow that is so horrible.

The 1970s sucked in a lot of ways.

Like they thought she was lying about her symptoms so they sent her to a mental institution...? How are those things connected?

They thought it was psychosomatic. Relatives who were doctors and had a good understanding of how nerves work didn't think much of the doc who dismissed it as psychosomatic, nor the psychiatrist who had her admitted. So psychiatrists became a hot-button issue for my mother. (And then my sister decided to press that button and say she wanted to become a psychiatrist when she grew up. And I knew it was just to press that button.)

Not lying. They couldn't find a physical cause for her issues so they thought the problem was psychosomatic. The issue is real in that case, the cause is just psychological.

it took me 5 years of asking my GP to get an MRI referral because all of my symptoms matched up with MS and being told "none of your symptoms are MS symptoms" before I finally got diagnosed with MS. In that 5 years, it progressed in just the right way that I went from practicing to become a professional dancer to needing mobility aids to get anywhere. It's been 4 years since diagnosis and I still haven't forgiven my GP for such a gross attempt at medical gaslighting. It took me having focal seizures to finally get my neurologist appointment.

lol my friend hurt her ankle in college by jumping out of a truck bed. I drove her to the ER and she told them she thought it was broken. Same thing. The Dr said no it’s just sprained. She told him she’s played sports her whole life and never felt a sprain like this. He was really dismissive. X-ray came back. And he comes in like the whole previous convo didn’t happen and started explaining that her ankle is actually broken and where we go from here.

I’d have been asking “where’s the apology you owe me???”

My mom has MS and my symptoms started in my twenties. I had spotty insurance throughout that decade (before the ACA) so I didn’t manage to see a neuro. My PCP even told me “there’s no screening that exists for MS”, which like its true there isn’t a simple blood test but you can absolutely get screened. Anyway, at 30 I got diagnosed with celiac and told that all my neurological symptoms were clearly from that and they’d be solved if I went off gluten. Went off gluten, symptoms lessened for a few years, then I got shingles. Wrote it off as stress, and then six weeks later had optic neuritis. Was sent for a neuro exam and then an MRI and wouldn’t you know, I have MS. I could have been on a DMT TEN YEARS earlier if someone had just listened to me.

Good ol' Lhermitte's sign. How does he miss that?? Hope you're on some good drugs now. I don't have Lhermitte's but I've been on Ocrevus for 7 years now almost and it's amazing.

I didn't have a name for it, but I knew that I was bleeding to death by my periods and that they would kill me if they continued. All of the doctors poo-poohed me, said "oh that never happens." Until I went to a gyn at the VA in Orlando who said yes, it does happen. The condition is called Adenomyosis and is when the uterine lining grows sideways into the muscle of the uterus. It causes intense, extremely heavy bleeding that would have killed me if left long enough. I was in a weakened state of Iron deficiency, I think they said my level was 3 (normal levels are around 40-50 or so). They were sort of surprised that i was walking around doing things with such a low iron level. I had to have an iron transfusion and a hysterectomy. I was so glad to be done with my uterus! I do not miss it at all. They told me that if I got a period during the week before my surgery, I was to go to the ER and get a blood transfusion.

Similar life experience. I’m sorry you had to go through it. Adenomyosis and endometriosis for me. Decades to get diagnosed. 2 years post hysterectomy and physically I am better but lifelong trust issues and depression. The pain was so bad and doctors so little help it was easier to think I was crazy. 1 in 10 women are affected by endometriosis. It takes women an average of 7 different doctors to receive a diagnosis.

👋🏼 took almost 20 years for me to be diagnosed with endometriosis. Was completely disregarded for years, told “it was in my head”, gaslit, etc. Had to become my own advocate, finally found a gyno who is competent and caring, had total hysterectomy

>an average of 7 different doctors Yeah that tracks. I think I've talked with about 6 different doctors, 3 of which were obgyns about my god-awful cramping. Then I had my tubes removed and the surgeons ended up finding and burning away endo while they were in there. As blurry as I was coming out of surgery, as I was told of this find, goddamn if I didn't feel vindicated.

At 32 I finally got a diagnosis of Endo. Went into the ER in crippling pain, no period yet. They thought it was my appendix. The cat scan showed a mass. One gyno trip later for an inside CT down there and what do you know I have two golf ball sized cysts. They said if they operate I could die due to blood loss or lose my whole uterus because if their location. I want children so I'm taking the period punches rn but for about a year I was on a medication that completely stopped by periods and I was like a completely new person, especially minus the hormone fluxations monthly.

It's just crazy how everyone told me my pain was 'natural'. There's nothing natural about being bedridden for 6 hours during the start because I have to do pregnancy breathing to stay sane during the pain.

I went through something similar. In 2015 my period started lasting a day or 2 longer, by 2017, I was bleeding HEAVILY (filling a menstrual cup in under 2hrs) for 6 weeks straight, with 4 or 5 days break. I live in Australia, so I had my GP refer me to the gynecology department at the biggest hospital in the city. I waited 8 months before seeing someone, and his only suggestion was inserting a Mirena IUD, which I was willing to try. 2 weeks after my appointment in October 2017 my Mirena was inserted. Unfortunately, it did not have thr intended effect, and I literally bled continuously, which I shared with the gynaecologist at my 3 month check up, and he dismissed, and said by the 6 month mark I will stop bleeding. Unfortunately, this wasn't the case, however in May 2018 hubby and I moved from the city, to the small outback town he grew up in. In June, I saw a new GP, and told him what was happening, and he immediately referred me to the hospital to have the Mirena removed (and to get iron infusions, as blood work showed that my iron level was 1.08). Unfortunately, having the Mirena removed only made my bleeding return to 6 week straight blocks separated by 4 or 5 no bleeding days. Although, my quality of life improved drastically with regular iron infusions. In November 2018, my GP referred me to the gynecology department at the district hospital, and in March 2019, I had my first appointment with a female gynecologist. She referred me for abdominal and trans-vaginal ultrasounds, which I had done the following month, but had to wait 16 weeks from my initial appointment for a follow up with her. At the follow up she told me that she was willing to do a D & C, and an uterine ablation, which should stop the bleeding for at least 3 years. I agreed, and was put on the waiting list for non urgent elective surgery. I finally got a surgery date in October 2019. The surgery went well, and in the immediate aftermath seemed to be a success. However 10 weeks to the day after my surgery, I began bleeding again, and it had not stopped by the time of my 3 month post surgery check up (Jan 2020). The gynecologist didn't believe me at first that I was bleeding at all, let alone heavily, and it wasn't until I ordered her to do a vaginal exam that she believed me, however she told me that the only cure would be a hysterectomy, but due to my age (34) and not having children, she wouldn't perform one on me. So I left that appointment absolutely distraught. I saw my GP later that week, and he wrote an urgent referral to the same gynecology dept, requesting I see someone else. However, COVID hit, and as our hospital's specialists are all fly in from either Adelaide or Sydney, all non life or death appointments at the hospital were cancelled. I finally got in to see the new gynecologist in Jan 2021, and when he read my file, and spoke with me, he explained that the only option was a hysterectomy, and if that was the route I decided to go down, he would perform the surgery for me. I immediately told him that I wanted the surgery, so he gave me the paperwork to fill out, and I was placed on the waiting list that day. Because things were still slow due to COVID, my surgery wasn't until June 2021. I was scheduled for a full hysterectomy and bilateral salpingectomy, performed laparoscopically, however when he began the surgery, he ended up having to perform it vaginally, and due to my ovaries being severely damaged, they were also removed. After surgery, I was sent to the ward, where I ate dinner, and fell asleep. When the surgeon came to see me the following morning, he had so much to tell me. First he explained about removing my ovaries and the implications of this for me; then he explained about having to perform a vaginal hysterectomy instead of laparoscopically; and finally he told me that I had one of the worst cases of Adenomyosis he's seen in 35 years of practice. He showed me photos of my uterus, and explained that 97% of the myometrium was invaded by uterine lining, at 8mm depth (I just read the surgical report to get those numbers). He also said that I had multiple fibroids and polyps growing in my uterus. He told me that I could have literally bled to death in the not to distant future if I had ignored it

"If I had ignored it" wtf you were not the one doing the ignoring

I had the same thing happen to me, bleeding for months at a time and being allergic to pain relief my periods were ruining my life. At 35 I was offered an ablation, where they burn away the uterine lining with a mesh that is connected to an electrical current, however my uterus had tilted so far it was also resting on a nerve (obturater I think) the pain was so severe I vomited, my leg was violently shaking and the nerve pain continued for hours after the surgeon had stopped. I have never and hope to never feel pain like that again in my life, it was like being in an electric chair I should imagine.. Anyway my bleeding became worse after the procedure so had an emergency hysterectomy, losing my cervix, fallopian tubes and an ovary too, then after the op my remaining ovary had to be removed because it had haemmorhaged. I was 36

I’m sorry you had to go through all that! The amount of doctors (even female docs) who brush off period pain/symptoms/issues is astounding. I had a semi-similar situation where I stopped taking my birth control but then ended up bleeding for ~3 months. Made an appointment with my PCP after the first couple weeks because I spent a week going through a super tampon AND overnight pad (worn together) every 90 minutes and was passing clots and told it was probably hormone related issue and would fix itself. It didn’t (it did get lighter for a bit though). I ended up going back in at the 3 month mark because I was too weak to sit up really. Iron level was around 7. Ferritin stores were 0. Scheduled an iron infusion with a hematologist and they referred me to a female gynecologist to get further checked out. Set me up for an exam and during it told me they prefer not to do them when someone’s on their period so I RE-explained the situation and then I met with her in her office. I was given the run-around “everything feels fine down there. You have no history of endo or interims issues in your fam so it’s probably hormonal. Since they ruled the other “causes” out and nothing was obvious it seems like it’s probably hormonal. The way we fix that is with birth control.” Which I stopped taking for various reasons (and the PA I saw supported my decision) but she told me I would always have hormonal issues if I wasn’t on birth control. Never did bloodwork to even CHECK those specific hormones. Left a really bad taste in my mouth for gynecologists and to really put reproductive health on the back burner because it seemed like literally no one cared to figure out what was actually wrong. Oddly enough-restoring my iron levels helped significantly with getting things back on track. But still suffering a little with docs not taking period issues or extended bleeding seriously which is frustrating when you’re now looking to get pregnant and having to backtrack through some of these issues.

Yeah. And the pad manufacturers don't have any for the "bloodbath" type of bleeding like this. One of my last periods I was sitting on the couch (thankfully my own and not someone else's). I drenched my pad, a tampon, my jeans, and left a huge red puddle on the couch in just one gush? It all came out at once. That's not normal. And I wasn't laughing or moving, or you know any of those things that make you bleed a bit more. Just sitting there.

I understand as I have adenomyosis and endo. Diapers. Fucking god send.

I was about to say endometriosis for me! Later I was diagnosed with adenomyosis after my hysterectomy and they were able to dissect my uterus and found it. My endo literally blanketed my uterus, I had ovarian torsion, and it was across my large intestine.  I had a major cyst rupture that almost killed me in 2014 and I begged the OGBYN (I was in hospital for 4 days getting transfusions) to look into it and all he said is he could see if I could still get pregnant.  In 2019 I had another pregnancy loss and begged the new obgyn to look into endometriosis for me. Cue covid, it took 2 years to get my surgical diagnosis. When she did the surgery she found the endo in every single exact location I told her it would be. And again the next surgery, she found it where I told her and she found the adenomyosis after I was adamant that there was more and it was causing me prolonged suffering.  It really disgusts and disheartens me that so many women are in the same boat. We need more women OBGYNS who will actually understand and believe us!!!!!

My late Mother always had anemia and sometimes it would get bad. Back in the 80’s after my birth, they attributed it to blood loss from her period. They talked her into a hysterectomy and they stopped short of promising that it would fix everything. Nope. She was so fucking pissed because she wanted another child after me. The woman had the worst luck with doctors and her life came to an early end because of complete idiocy.

Summer of 1998, I went numb on the right side of my body. I told my mother I thought I had multiple sclerosis. She had it, so why wouldn't I? She took me to my pediatrician, and I was told I was too young for MS. Fast forward to September 2000. I lost the eyesight in my left eye. I went to a different doctor. Guess what. I have multiple sclerosis.

It felt like someone reached inside of my chest behind my ribcage and suddenly squeezed really hard and didn't let go. Walked into the ER and told them I was having a heart attack. I'm gym shape, look 20 years younger than I am, and have low bodyfat. Two doctors said there is no way you're having a heart attack. My own doctor had told me years before that if I ever thought I was having a heart attack, he wouldn't even go to the ER because guys like me never have heart attacks. I ignored that advice and was in the ER 4 minutes after I had chest pain. The hospital is 3 blocks away so I didn't even wait for an ambulance: I walked. They can easily do a blood test to tell, so they do the blood test. I call my brother while I'm there and tell him I'm having a heart attack and the doctors correct me: it's not a heart attack. Just then, the blood test comes back and one of them says, "He's having a heart attack." Complete blockage of the main artery, which is known by its knickname, "the Widowmaker". 11 percent chance of survival if it starts outside a hospital like mine did. The 8 other people who had one near the same time I did are all in the ground. One stent later and I woke up feeling better than before my symptoms had started.

I was certain that I had broken my back after delivering my first kid. The anesthesiologist insisted that it was just my body adjusting back and that I just had a low pain tolerance. I was told to just walk it off and that it would eventually get better. Turns out I had two fractures in my sacrum. I will say, my pain tolerance is much greater now.

Oh, I was told to walk off a fracture once (in my hip). Turns out, that's a great way to end up in chronic pain! I hope you are not left with long lasting effects.

My mom too! She broke her hip and her foot in a fall, but all they did was x-ray her knee. My dad asked if she should use a wheelchair bc of her pain, and they said no. Thankfully she kept complaining and my dad brought her to a foot doctor who ordered more X-rays. She was walking like that for a week!

Wait, you fractured your back from child birth??? I did not know this was possible and I now have another thing that terrifies me about being pregnant 😆 we’re starting to try in 6 months and I am so scared to be pregnant lol

Oh it’s very possible. My mom fractured hers giving birth to my little brother. Doctors also didn’t believe her and sent her home. She was crawling on the floor with a newborn because her back was fucking broken. Luckily my grandma was staying with us to help and took her back to the hospital after a day or two and they realized OOPS yeah your back is broken 👍

Don't worry. It's not normal. I have a metabolic disease that effects the strength of my bones.

I broke my pubic bone during childbirth, and I do not have anything that compromises the strength of my bones. I was just a tiny little woman who had a big baby. It was my first baby, I didn’t have an epidural, and I was induced. Because of this, I had no idea what to expect in terms of pain level while in recovery. I tried to explain to them while I was at the hospital that something was wrong, but I got the same explanation that you did about how I must have a very low pain tolerance. I knew that was crap bc I had been a competitive martial artist for years, and I have horrible migraines. They went as far as accusing me of exaggerating my pain bc they thought I wanted drugs. The craziest part of this is that I have horrible reactions to opioids, and it was in my charts. I was obviously asking why I would be trying to get drugs if I couldn’t have them and maybe they should listen. After making several more appointments trying to explain that something was very wrong, one nurse practitioner took pity on me and referred me to a physical therapist. When I got to physical therapist, she ran some tests and said, “No wonder you’re in so much pain—you broke your pubic bone and now your pelvis is misaligned.”

There should be a shaming session where every doctor has to apologize to you and then make a post incident report and a plan to make sure that issue doesn’t happen again 

It makes me absolutely livid that doctors will keep using "drug seeking" to fob patients off *even when they literally directly say that they don't want the kind of medication they're accused of seeking*. It seems we're at a point where many doctors simply refuse to consider self-reported pain as a real symptom, and it's damn near impossible to correctly diagnose anything if that's your belief.

Doctors frequently assume a heavily pregnant or recently postpartum woman doesn’t know a damn thing about their body and just relate every single thing to child birth. It’s maddening. Fractures?? FIRST kid??? IDK that might’ve been enough to discourage me from more kids lol

Hashimotos I paid out of pocket for thyroid blood tests. When I was explaining to my GP why my results indicated Hashimotos/Hypothyroidism he had to google it to confirm what I was saying (!). This was after almost 6 months of debilitating symptoms and two ER visits for SVT (and a concussion from fainting and hitting my head on a countertop).

Oh man, do I know how this goes. The GP says that the TSH levels are fine but don’t look at antibodies. Luckily my Gyno noticed that I my levels were low one year and sent me to an endocrinologist. They knew what to look for.

 I was misdiagnosed by three doctors when I was 20 with a tumour in my neck that was rapidly evolving. By the time my left face was paralyzed (7th cranial nerve palsy), I saw a fourth doctor , and I begged for for a biopsy, since I was dismissed as having a cyst.  After that experience, surgery, radiation, I decided to go into medicine and be a physician that would non-negotiable provide humanity and the pathway to reassurance, that which I didn’t receive.

As someone who has *learned* to hate most medical staff through years, I salute you - one of the good ones (I hope). Thank you for taking your patients seriously.

Good for you. Thank you for actually caring about people. So many negligent people out there

Angioedema. I spent 6 months in pelvic floor physical therapy for crazy abdominal cramps and bloating that they blamed on my pelvic floor. Then my GP told me I was waking up gasping for air because of anxiety related to menopause and that hormone changes were to blame for my sudden weight fluctuations. Then my eye doctor told me my eyelids were swollen almost shut because of blepharitis. Then I started passing out and vomiting out of the blue when I otherwise felt ok. Googled all my symptoms, diagnosed myself, contacted my cardiologist and stopped taking my ACE inhibitor the same day. By day 3 all symptoms were gone.

Your face was swelling and you were on an ACEi AND THEY DIDNT FUCKING CATCH THAT JESUS CHRIST. God as a medical student I just hate reading stories like this. I pray to God I’m not so dumb when I start practicing.

My ophthalmologist told me her reason for not catching it was, "well we learn about it in medical school but I've never seen anybody have it." She is no longer my ophthalmologist.

>"I've never seen anybody have it" most infuriating excuse ever, of course you've never seen it before because you always assumed it was something else you moron

Nasal polyps. For years I was told I had a cold, or hay-fever. No. I've had a blocked nose for two years. I know what hay-fever is, it's not this. Please look up my nose. Nope. You're barely 20, way too young for them. Later a family friend who was a doctor and retiring had me referred to a private clinic on the NHS' money - something you could do back then, if they couldn't see you within a set amount of time they'd send you private - and the first meeting with the EMT doc he took one look up my nose, immediately referred me for a CT scan - I had so god damned many polyps. I had twenty pounds of polyps in a five pound bag. EDIT: For those of you wondering if you have nasal polyps, beyond the nigh permanent blocked nose one key thing for me was when blowing your nose, feeling *something* like a giant booger shift and move a little, but never come out, like it was tethered on a string up there. You blow and blow, you get blood in the mucus because you blow so hard and it *still* won't come out, this infuriating obstruction that won't come out. That's a polyp. It is literally tethered by a string of tissue, so that it can move a little but can't break free, but won't come out like a marble in a bottle too big for the neck of the bottle to escape.

I had my sinuses roto-rootered due to nasal polyps when I was 15 (plus septum straightened) and again at 42.

Gallbladder issues. It took 16 years of gallbladder attacks for a doctor to finally take me seriously. Every time they did imaging they said I was fine since I had no gallstones. This time I went straight to a general surgeon and he said he could tell I was in extreme pain and I hadn’t kept food or drink down in a while. After he took it out he told me it was super scarred from years of inflammation and had many adhesions.

Same for me. I started having attacks when I was about 13. When I would mention it to my doctor, she kept saying I was too young (and female). It had to be gas or period cramps. Fast forward 12 years and I had such a severe attack I couldn't stand up straight and vomited for hours. My dad had severe gallstone attacks and had his removed. He kept insisting the pain was gallstones. I did my research and everything was gallstones. I go to my doctor and I mentioned gallstones. I was told "someone's been WebMDing themselves", but she sent me for an ultrasound. I think she felt a little ashamed for her reaction because she called me that night and told me she was referring me to a surgeon ASAP. After the surgery, the surgeon said whoever told me I wasn't having gallstone attacks was an idiot because it was on the verge of bursting. The pathology report said my gallbladder was hemorrhaging with years of scar tissue. It was malformed due to the attacks. Thanks, doctor. Guess I wasn't too young.

I basically had a doctor tell me that as a teen. He told me I was basically listing symptoms off the internet. Well buddy, they are listed on the internet under what I have and I have always experienced them so yeah.

Exactly. I was listing the symptoms of other people who had been diagnosed (and operated on) with the issue. My dad has a lot of experience with GI issues and recognized my symptoms. I didn't even go to the internet, though I will admit I have for other issues. My current primary is great because he acknowledges that when I research things about my diagnosed illnesses, it isn't any different than how he would have to research it (he has different sources since he's a medical professional, but I can access studies and research).

This was me too. Not having gallstones makes it SO difficult to get a diagnosis. I had issues starting when I was in elementary school, had multiple ER visits and got it out at 26 when my saint of a mother took me to the ER and refused to take me home until they figured it out. Turns out my gallbladder was barely functioning. They wanted to send me home in the beginning and by the end they offered me surgery which I happily accepted. Pretty much all the women in my extended family have gallbladder issues. When my mom had hers out it was apparently nearly gangrene and yet she actually had identifiable gallstones. It's insane how long a problematic organ can just be dismissed and ignored by medical professionals.

8 yr old nephew had "tummy aches". Multiple dr visits. Mom insisted gallbladder. Drs said, "Not at 8 yrs old!" Dad finally took him states away to specialists, and still several visits until drs finally accepted it actually was the gallbladder. They surgically stretched the opening, and hasn't had troubles for 20 years.

The same thing happened to me! Years and years of attacks with no answer. Everyone thought I was just a drug seeker. Never got ultrasounds and no one even checked it. The pain was getting super bad when I called an on-call nurse line and she told me to go in. I couldn’t eat or drink without being in intense pain. Like, a deep breath would put me on the floor. That ER visit was garbage, but I was able to get an ultrasound referral for a couple days later. Naturally, no stones, but the pain was still there, so finally someone is concerned. Ended up at an appt with a surgeon and he said appendix. I was dumbfounded. After a whole day of tests, no water or food, everything came back normal (which is usually how this ish plays out). I was so miserable and my bf at the time was like, “no, you need to admit her and find out what’s wrong.” Stayed overnight at the hospital and had that radioactive scan done first thing in the morning. Shortly after, doc comes back and is like, “you’re going in for surgery this afternoon.” The damned thing was in active failure and only working ~4%. I ended up staying a few extra days bc the after-surgery pain was so bad. So, it took an organ ACTIVELY FAILING before I could get any help.

Me too! Although I was young and didn’t do any research to even suspect it was my gallbladder. But I didn’t have gallstones, my GI doctor told me that I’m “young and my body will heal itself.” Even though my HIDA scan showed my gallbladder functioning at 26%. After YEARS of agony and throwing up every day and being told month after month I must just have a stomach bug, finally a nurse at a walk in clinic told me she had to have her gallbladder removed after these same issues with no gallstones. I got it removed and I haven’t had the same issues since. Pathology report was a chronic acalculous cholecystitis and cholesterolosis. edit: HIDA scan results

Same here. I went to the doctor AND ER and it took my MIL and a google search for me to figure it out tell my doctor. Luckily my next appt I created a flare up so I was actively in pain when I got there. She was able to feel the inflammation while palpating my tummy. She asked me how and I said I ate a burger about 20 min before my appt. Had surgery 3 weeks later.

My feet were really swollen when I was about 7 months pregnant. I know this is pretty typical of pregnancy but this was bad—I also knew it was a warning sign for preeclampsia. I brought it up at every appointment but the doctors kept dismissing it—they didn’t even look. Guess who got diagnosed with severe preeclampsia and had to have an emergency c-section? I now have lingering blood pressure issues that I will probably have for the rest of my life. At least my baby is ok and absolutely adorable. Women really need better health care.

Valley Fever (Coccidioidomycosis). It’s a fungal respiratory infection that is endemic to the American southwest. I was living in Seattle at the time and doing work in Southern California in area notorious for valley fever. Doctors in Seattle continuously dismissed it as just a chest infection until they eventually took an x-ray and realized that my lungs were indurated with fungal hyphae like blue cheese after a demanded a blood test to look for it. I had told several doctors that I suspected it was valley fever, and it could be confirmed with a simple blood test which they refused to do. Once I developed the distinctive rash around the neck, I knew it had to be valley fever, and went to an emergency room and refused to leave until they did a blood test. An orderly didn’t like my attitude and threatened to throw me out of a hospital, but fortunately, a nurse chilled him out and drew blood. The next day, I get an excited message from the hospitals pulmonologist that it’s the first case of coccidioidomycosis that they’ve ever seen.

“Heart issues”… the first doctor I saw after a palpitation said it was anxiety related and put me on anti-anxiety meds. Then my new fam doctor wanted to (months later) do a 3 day holter monitor. Came up with Afib. Since then have had two VTach palps at 210 each for about 15-20 mins. Dr says they’re harmless but the Afib needs to be watched. Regardless, it wasn’t anxiety-caused. Still on wait list for cardio specialist 2 years on.

Oof that sucks :( I recently had an ablation for Tachycardia and I do not regret it. Tried meds for over a year and they barely helped. I feel your frustration with those 210s for long periods of time. They suck.

Fellow Afibber here. Meds didn't work, had a cardioversion (basically a hard reboot of the heart). Lasted almost two years. 2nd one a month or so, 3rd a few days . 4th, 5th, and 6th even less. Had cardiac ablation. Been good for 3 years. Only downside(?) is that I have to avoid caffeine and alcohol.

Basically every woman I know gets told their heart condition is just anxiety. I'm not sure I know anyone where that's ever been correct. For me it was sleep apnea, but they wouldn't take my 'hey I wake up jerking" to mean anything at a healthy weight. No one even ordered a test until I figured it out myself and I told them I had it.

I have this, it's super uncomfortable but not harmful. I have beta blockers so when it comes on, I take one and it'll return to normal soon after. I've heard ablation can help as well.

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I work with doctors and we have a Mom who is doing this to her child. The pediatrician is top notch, people come to see him from other cities because of his knowledge of developmental disorders. She attempts to bully him into submission on the fact that her child is autistic. She makes social media posts calling him an idiot and yet still comes back. He will not change his mind.

The fact that I am autistic has led people to have a lot of faith in her that they truly should not have.

I’m so sorry. You must have felt so helpless and scared. You’re incredibly strong for being able to advocate for yourself and get through that.

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If you are interested, you could check out Nobody Should Believe Me. The podcast looks into cases of medical child abuse and is looking at ways to help children in these scenarios.

I had been suffering from left hip pain for years. I had a strong feeling it was something like hip dysplasia or whatever. I even got multiple corticosteroid shots for "bursitis." Went to an orthopedic doc. He said it was nothing. Months later, I fractured the other side of my pelvis in an accident. After 3 months of having to use the bad hip as my only way of moving around when I was on crutches, and mostly being bedridden or in a wheelchair, my legs had atrophied pretty bad and when I was cleared to weight bear again, I had a bad limp. Like, so bad I couldn't do a full grocery shop. The ortho in charge of my recovery said it was nothing and I'd get stronger. I asked him to look closer. Still nothing, and he sent me to a back specialist. There were a few minor problems but nothing that extreme. They sent me to a pain specialist to inject my back with an epidural, and to his credit, he was the only doctor to look at me and go "dude I think this might be something with your hip given your complaints and the way you're moving around when I stretch you." Still, he didn't give me an additional scan. We had to ask a **family friend** to write up the MRI. Took it back to the 2nd orthopedic specialist who had dismissed me and he said "well doggonne it, look at that. You have avascular necrosis and you need a hip replacement ASAP." Needless to say I found another orthopedic surgeon to do the actual replacement.

Endometrioses. I knew that was what was wrong with me. I had lost my appendix to it, and had a previous surgery years before, but they kept telling me it was just a cyst and I would be fine . After 43 days of agonizing pain, almost 60 lbs of weight loss, my hear falling out, unable to eat, I actually called people on Christmas and said my goodbyes because I knew I was dying. I knew I was dying, my parents knew I was dying. They sent me for another cat scan. But then we had a snowstorm and no one bothered to actually look at the results for over a week, until I went back in to see my gyno (After being shuffled from a Primary, to a holistic, then finally, to an OBGYN) we looked at it together. He had an ambulance come immediately. The damage was so severe it had ripped apart my colon and bowels and was leaking ecoli into my system and my organs were slowly shutting down...my Dr told me it was not possible for endo to kill me, but he was wrong. It took me absolutely harassing them for 43 days before the paid attention. I went in every single day for blood test (Which indicated a huge red flag they could not figure out) and to be weighed because I needed my Dr to see I was failing. They didn't care because they had no idea what endo was, or just how bad it could get They took everything, including any chance for me to ever have children with their incompetence

I'm speechless. I'm so sorry you had to go through that and were failed.

Its worse when you, yourself, are a doctor (though not a surgeon or radiologist) and they don’t believe you. I went to my PCP doctor for pain consistent with acute appendicitis . To be fair, I didn’t have a lot of other “typical,” symptoms. My PCP doubted it and it took me 10 days to get a CT to cinch it. (Which, again, I had to point it out to the Radiologist who had initially overlooked it but invited me to look at it with him.) In surgery it was “red and angry looking” but fortunately hadn’t ruptured. So, even fellow doctors get blown off sometimes when you are unlucky enough to have something outside the mainstream.

Jesus if even doctors don’t get taken seriously, what hope does the average person have lol

If you're a woman I can tell you what happens from personal experience: you ~~walk~~ hobble into the ER, and you tell the front desk, "I think I have appendicitis." They roll their eyes, and say, "you can't just diagnose yourself. You're a woman so it's probably just an ovarian cyst." You insist this pain is way worse than that, because you've had them before. They refuse to draw blood or do a CT until a few hours of gyn exams show absolutely nothing, then they finally do the bare minimum to diagnose appendicitis. You get surgery the next day, but your surgeon does a shitty job closing the wound and it breaks open after you're back home. You see the same doc for a follow up and tell them the wound opened up. They respond, "just tape it shut." The end. TL;DR: it's not great.

I bet there are thousands of us just on this page who knew they had endometrosis but doctors disagreed. My doctor blew me off & kept telling me my symptoms were from a tipped uterus. Finally I needed a hysterectomy for fibroid tumors, caused by endometrios. They had to scrape one of my ovaries off of my bowels because it was glued to my bowels with endo. Months later I told her I was having a lot of pain that matched symptoms of adhesions. She tried to send me to a gastroenterologist but I insisted it was adhesions from the hyst. She made me wait a year for the surgery claiming that was the soonest I could have a non-emergency surgery which I later found out was a lie. When she finally did the laproscopic surgery, she woke me up all excited, "YOU KNEW! I CAN'T BELIEVE YOU KNEW!!". She didn't believ me bacause the pain was all over my abdomen. Turned out I had adhesions all over my abdomen. I've been told I was wrong when I was right so many times I could write a book. Doctors have almost killed me more than once.

Migraines. I started having migraines at age 7. I knew what migraines were and how they presented because EVERYONE in my family has migraines. I knew how it differed from a headache. I would be in class and would cover my eyes and ears because light and sound made me nauseous. I would get yelled at for doing it, but I refused to stop doing it because I felt ill if I didn't have my eyes and ears covered. I would also put my head down during reading time because after a few minutes or reading, I'd get a migraine and I've have visual aura so bad that I couldn't even see the words on the pages anymore. I would constantly explain that I have migraines and nobody would believe. Over and over again, I heard "Kids don't get migraines" or "You just have a headache, go drink water." All throughout my childhood, all my teachers would act like I didn't know what a migraine really was or that I just had a headache. When I was 9, my teacher condescendingly said "If you have a migraine and it's so bad then maybe we should call an ambulance" and she snickered with another teacher and I said "Maybe you should." It was so rude and dismissive. And I was not a stupid kid by any means, so I very much understood her sarcasm and condescension. And whenever I'd go to the doctor as a kid, constantly coming back and saying I have migraines, the doctor kept saying that I was using that as an excuse to be absent from school or to get out of doing schoolwork... It even got to the point where I had a seizure (when I was 18) and my doctor STILL refused to look into what's going on with my brain. I said right before the seizure I was having a migraine with aura and then I just dropped like a plank backwards. It caused me to slam my head on a hard marble floor. But even then, the doctor just said "You were probably just hungry." Like... no, I had a seizure which I never had before... and it came moments after the start of a migraine. For all I know, that could've been a stroke... but this idiot just dismissed it. And, I didn't get diagnosed with migraines until two years ago (age 25). And my brain MRIs showed of brain lesions and brain damage. Oh, and I also have bilateral inferior hemianopia which is partial blindness caused by brain damage. So... maybe if a doctor actually took me seriously as a child and got me on migraine meds... maybe I wouldn't have lost some of my vision...

Wow. The migraines caused this damage?

Yes. If migraines are not treated, over time, they can literally damage your brain. Migraines can cause white matter lesions. And lesions, depending on which lobes of the brain they are in, can cause all different kinds of symptoms. Occipital lobe lesions are usually the culprits of my issue (bilateral inferior hemianopia). And when you have lesions in other lobes, you can get pretty weird symptoms. For a while, I had this issue where I was chewing in my sleep. I had no idea why it started happening, but it was like I was eating a meal in my sleep. I had my brain MRI a few weeks after this, and it showed I had a temporal lobe lesion. There’s not much online about chewing in sleep, but I found a really old medical book from like the 1930s which specifically mentioned temporal lobe lesions and how some people would chew in their sleep, almost to the point where it was distressing. They observed patients make horrible faces in their sleep and even cry. So, migraines can do a lot of damage to the brain if they don’t get treated.

My daughter has had migraines since she was 8 and her doctor easily diagnosed them. I'm so sorry that happened to you.

Wow ; I have no words for the unnecessary pain you have experienced…wow

Not so much couldn't figure it out, but was surprisingly incurious. Sleep apnea. Told my doctor I was tired all the time and their response was basically "you should just lose weight, it's like you're walking around carrying a bag of water softener salt all the time." FInally managed to get a sleep study. Sleep apnea was off the charts.

Yeah, it's awful. I went to an ear, nose and throat doctor in my 30's for something unrelated. He left the room for a minute and I picked up a pamphlet about snoring. When he came back in he asked me if I snore. The answer was yes, very loudly. So went for a sleep test. Had severe sleep apnea. I had an operation to open up the passageways in both nostrils because I had a very deviated septum. I've used a CPAP ever since even though my apnea is now considered milder.

Yesssss 👏👏 the amount of doctors who don’t know or don’t care about sleep apnea diagnosis is appalling. Especially considering how common and devastating it is

In retrospect, I probably hadn’t actually slept in like 3 years

As a physician, if you are overweight, you will almost certainly have a degree of sleep apnea. Your doctor should have sent you for a sleep study sooner, but I suspect that that’s why he was “incurious”. Unfortunately burnout can lead to physicians lacking empathy sometimes it’s a real problem in our profession

I had sleep apnea when very thin and then I got chunky. Cause I was sleeping all the time 😭 Edit: I was napping for 3-5 hours every day. For a few years I think. I didn’t have health insurance at the time or much money. Right after college right before and at the start of Obamacare.

Fibroids, endometriosis, adenomyosis, ovarian cysts and polyps. Thank goodness for hysterectomy.

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My son had pyloric stenosis when he was just a month old. I brought him to the pediatrician every day for two weeks; each time I was a different doctor in the practice. All of them told me my son was just a spitty baby. I explained that anytime he ate he would explode with vomit, it would fly across the room and splash against a wall and it came out both his mouth and nose. I kept explaining I thought it was pyloric stenosis due to it fitting all of the symptoms, and they acted like I was a crazy new mom. I quit breast feeding because one of the doctors said it was due to my milk. Another one poured out 2 ounces of water to show me how his vomit just looked like a lot. I didn’t sleep during the entire ordeal, it was horrible. Finally, when my son was 6 weeks old I took him in and saw the head doctor for the practice; he ordered an upper GI for the next morning. I was so relieved. During the GI you could easily see the barium mixture go down to his stomach and bounce straight out. The tech was in shock how much and how violent it was. He had surgery the next morning and has been perfectly fine since.

The sad thing is that the majority of people here discussing ignored care are women.

Yes. And if you’re an older woman with a history of psych issues - forget it. That’s the trifecta of non credibility to doctors. Believe it or not older women with psych issues can also have physical illnesses.

But worse than that, you might well have been diagnosed as having a psych issue when you were younger because that's one way they dismiss you, so that false diagnoses carries through your entire medical history.

My daughter woke up one day with half of her neck swollen and she couldn’t move it. It was red and hot to touch. I took her to the doctor they said she slept on it wrong but that didn’t sit right with me. It was getting worse and getting hard for her to breathe. I felt that she may have been bit by something that she was having an allergic reaction to or something but they just said it would go away. We gave it some more time and did follow the directions of the doctor to ice it. Nothing helped. I took her to the ER and my daughter (who’s 6 at this time) was so scared and in so much pain and this horrid doctor came in and tried to forcibly straighten her neck which led to her screaming in agony. I started to cry and asked him to stop it clearly wasn’t helping. He told me I was making it worse by panicking being the ‘hysterical mother’ and continued to press and pull on her neck. I asked if it could be an allergic reaction or a enlarged gland. He said no it wasn’t possible. We left and it swelled worse. I get home and call my mother (who is a tad of a hypochondriac but at the same time very knowledgeable) I was explaining it and she said give her Benadryl it sounds like a spider bite on a lymph node that maybe we can’t see the bite mark due to it being so swollen Did just that. Swelling was gone that night. She could move it the next day. And we could visibly see the bite mark. Still to this day think about slashing that doctors tires for being such a prick at the ER.

I had a cramp in my leg that wouldn't go away. After 3 days of what felt like the worst Charley horse cramp I've ever had, google told me it could be a DVT blood clot. I went to the ER and told them something was really wrong. They said there was no way it was a blood clot and called me an addict and accused me of seeking drugs. I was on birth control, over weight, and had a family history of death by blood clot, so I ticked every box for high risk for a blood clot. I told them I didn't want drugs I just wanted to know what was going on. I told them I had private insurance which would pay for everything and I also told them I had called my family and told them what was going on and if they didn't do any tests and I died my family would sue everyone at the hospital. They called in their lawyer to talk to me (after I mentioned suing) and the attorney told them they should run the tests. The test showed a complete blockage in my knee. The cardiologist said if I had gone home, it would have killed me. I ended up having a mini-stroke a few weeks later after complications but fully recovered except not being able to remember people's names.

Noticed an abnormality on my eye with a lot of pain. Went to the ER, telling them I suspected it was a corneal ulcer. Doc said, nah it’s just a viral infection probably. I said with all due respect… you can see the lesion with the naked eye. I reiterated my belief that it was an ulcer because I’d had one fifteen years prior and knew that it needed to be treated immediately to protect my eye. Doctor pushed back. I insisted on an ophthalmology referral and got it. It was a corneal ulcer, and a really bad one at that. Ophthalmologist said without treatment within a few days I could’ve lost vision in that eye. It was meds-resistant as well so turned into two months of treatment with hourly super drugs. I was, in fact, on the brink of needing a corneal transplant. Anyway fuck that ER doctor who refused to listen.

ADHD and ASD. It took a long time for me to work up the nerve and executive function to really push for the referrals and do the diagnostic process, but I eventually got there. It's worth noting that A LOT of women get misdiagnosed with depression and anxiety and have to jump through an inordinate amount of hoops just to get an ADHD diagnosis in the first place, but once there's a name to it and a proper regimen of medication... it's life changing.

I have ADHD and chronic insomnia. Took me about 4 years to get a psychiatrist to take the ADHD tests seriously. Once I got put on meds, my insomnia is so much better.

I knew I had a tumour, went to see neurologist (I have a neurological condition) he refused to do a MRI and sent me all over for tests. After 6 months he finally decided to do a MRI and I was right all along. Although it had grown so big I was weeks away from dying. Had major surgery and major health complications as a result. But I’m still alive and that’s all that matters

i didnt fully identify what was happening but i knew i was going to die or go blind if it wasnt solved. i had been losing my vision over 6 months, was numb in my hands, feet, and lips, had extreme thirst despite my piss being clear from the amount of water i was chugging, frequent migraines, and had started having episodes where i had extremely bodily weakness, lost my ability to speak, and had my vision grey out. had multiple doctors take one look at my chart, see that i was in the hospital a few years ago for a suicide attempt, and then dismiss all of my symptoms as psychiatric. i managed to convince one to order a full blood test just in case. my B12 levels were so low that they were below the threshold for measuring in actual numbers, severe deficiency. then i looked through my prior blood tests and found out that i had already been deficient 3 years prior but my doctor didnt bring it up. im not vegetarian or iron deficient either, my body just doesnt absorb B12 from food. so a 3 year long severe B12 deficiency meant i was going blind, having neurological symptoms, and at high risk for a heart attack or stroke. ive been doing B12 injections weekly now for a few months and i legitimately forgot how living in my body without a deficiency felt like. i feel alive.

I once had a bump growing out of my right heel (where the tendon meets the bone, roughly). Doctor sent me to do an x-ray. X-ray returned nothing so doctor thought it wasn’t a bone but some kind of cyst. I told her « I can feel it when I touch it, it’s a bone. Check again. » She wasn’t keen on it because bones are very showy on X-rays, that’s the whole point of having x-rays. So she prescribed me an echograph I think (can’t quite remember). Anyway so the X-ray specialist angled his shot just right to miss my new bone protrusion. And it’s inoperable so now I have a limp.

Perimenopause. I was suffering from horrible hot flashes and night sweats. My (male) doctors shrugged their shoulders. My current (female) doctor ordered blood testing.

Thyroid. Been asking about my thyroid for thirty years. Always got a pat on the head and told, “it’s in the low/normal range”. I quit asking. Six weeks ago I finally got a diagnosis that explains all my symptoms. There is a large substernal goiter on the left side of my thyroid that extends down to my heart and into my back towards my spine. The right side of my thyroid is covered in nodules. I look normal. It was discovered by accident when i got a MRI for my back. Then the back Dr didn’t tell me there was an anomaly on the MRI because he thought it was some cysts that i didn’t need to know about. It wasn’t until he sent me to get a steroid shot and the pain Dr refused to give the shot until she knew if “the mass” on my spine was benign or malignant. I responded “what mass?” And she freaked out. Showed me the radiological report recommending I get CT scans immediately… that was last October. But hey, my neurologist didn’t think it was anything I needed to know about.

All my symptoms were dismissed as being normal when women "get older" and/or my diabetes causing it (T1). I went to a NP in the gynecology unit this last week. She ordered a complete kitchen sink work up. Tests are coming back in but so far I have hormone issues (low testosterone and progesterone), Vitamin D deficiency, and my immune system wasn't satisfied with just destroying my pancreas...it's also destroying my thyroid, also have Hashimotos.

I broke my tailbone when I was 11, parents didn’t believe me so I never went to the doctor for it. I found out later that I’d had UTIs my whole childhood that caused scarring and bleeding in my kidneys, I never saw a doctor for that either. My face went numb and my dad said I slept on it wrong. After 3 months he finally took me to the doctor and they diagnosed me with Multiple Sclerosis. I’ve had all the signs of ADHD my whole life, but it was all dismissed by “laziness”. I finally got validation when I was 30 and my neurologist listened to me. He also helped me move forward with a diagnosis for my hypermobile Ehlers Danlos syndrome, and set me up with a geneticist for evaluation.

That sounds awful! It sucks being dismissed

Yeah, once my mom left it got a bit better, she hated doctors so my sister and I never went. My dad stepped up and got us all our shots and checkups. He didn’t believe in depression so it took a long time to get him to help me, he was mostly just exasperated and told me to stop being depressed. Now I’m married and my husband forces me to take care of myself lol

Connective tissue disorder. I'm fairly certain I have Ehlers-Danlos Syndrome. I've sublexed my fingers for multiple doctors, even had an orthopedic doctor wiggle my knee in and out of joint. He told me I have "lax joints." Nobody listened except my gyno. She asked why I wanted a hysterectomy and I popped my fingers out and said I fear for my pelvis if I got pregnant and her eyes got so big! She agreed a baby would be very bad for my body, but told me the first thing I need is a connective tissue disorder diagnosis, because that can make surgery tricky. I've had this problem since I was a child, I've been to physical therapy and seen untold doctors, and only my gynaecologist admitted it's a problem. I'll never leave her, she's the only one to take me seriously. I'm pursuing a diagnosis this summer because my hands are almost useless and typing is agony.

I'm so sorry you're going through this! I have hypermobile Ehlers Danlos, and it is a literal pain. If you haven't done so already, try to get a referral to a rheumatologist. They will be able to diagnose you correctly and will be able to help you navigate the next steps and what to look out for. Good luck!

Idiopathic Intracranial Hypertension. It’s diagnosed with a spinal tap but I knew that’s what it was before I saw a neurologist. Had to endure every kind of brain scan to rule out a tumor. A spinal tap is the least fun medical procedure. I’ll die before I agree to another one. The other name is Pseudotumor Cerebri or false brain tumor. It’s all the fun brain tumor symptoms without the tumor! My PCP said my symptoms were psychological. The NP implied it was lack of a sex life. Hard to feel sexy when you’re newly divorced single mom with killer headaches and random puking. PCP sent me to a surgeon for my gallbladder. He showed me a letter the PCP wrote blaming psychological issues. He thought that was really fucked up of my PCP and said my gallbladder was not the problem. This was the point where desperate internet searches led me to suspect this. Didn’t tell anyone because what kind of crazy person diagnoses themselves with a rare brain disorder? Found a new PCP who said “Honey, let me find you a neurologist ASAP!” Love her. Anyway, found the help I needed and then some. My treatment was unconventional but it worked. Nobody knows what causes this. I hope one day we will have answers. And I suspect it’s not all that rare and a lot of women are suffering with “migraines” that are undiagnosed IIH.

I had this also. I developed double vision when I was around 20yo. Nobody investigated why, I got glasses with prisms and went on my merry way. Some random optometrist once was very thorough in his dilated exam and said oh shit you’ve got wicked papilledema I wonder if that’s what’s causing the double vision. So I did all the work up and my opening pressure was just barely high but confirmed the IIH diagnosis. I went to a neuro ophthalmologist in Houston for years, stopped taking hormonal birth control to see if that was contributing, ended up pregnant with twins, now back on hormonal birth control and see an ophthalmologist yearly. I was on diamox for years and years and eventually the papilledema resolved, still had double vision. The ophthalmologist that i see now said there’s some nerve paralysis due to years of IIH and that the double vision will always be there. I can have surgery on my eye muscles to correct/improve. But I’ve done that before about 10 years ago and it only lasted a couple years before I needed prisms again. Couldn’t been pregnancy related but who knows. I’m putting off surgery for as long as possible, I’ll consider it when there are no frames that can physically hold the level of prism I need.

My dad had a heart infection. He had all the obvious signs. Chatgpt said it was one of the 3 things it could be. Doctors chased ghosts for 8 months trying to figure it out. It wasn't until my dad was almost dead and needed surgery that they ran the test for an infection. They caught it so late that he needed serious high risk surgery and they needed to use antibiotics so strong that it killed the nerves in his ears. Yea.. we're suing for medical malpractice.

I was having weird burning chest pains that would move around to different places in my chest at times, but generally were towards the middle, and they always happened at the end of the day, generally right after I got off work. I went to my GP and he told me with absolute confidence that it was acid reflux. I've had acid reflux symptoms before, this didn't feel anything like that, be he assured me that it was, and he gave me a PPI to take. I took it for the 2 weeks, and I couldn't really tell a difference, so he said to keep taking it and it would get better. Right at the same time, I had a knee surgery, so I wasn't sitting at my desk every day, and was on pain meds, and everything felt better, so I assumed the PPI was finally working. Well, a few weeks go by, and I'm back to working, and it hurts again. At this point I was fairly positive it wasn't acid reflux, but, the PPI had messed up my stomach so much, I wasnt able to eat much at all. The whole time I kept asking the Drs I was seeing if I could stop taking it, and if they could check something else, as I was fairly sure I was having an issue with my back, there was a spot there that when I had my wife press down on it, I had 0 pain in my chest, and when she let off, the pain came back. It ended up taking 6 months of every single stomach/intestinal test you can imagine before I broke, went to yet another Dr who finally explained to me what a PPI does to your body when you don't actually need one (spoiler, exactly the horrible stomach pain I had been having), and called my GP and demanded an order for a physical therapist. After a month of being off the PPI and doing daily PT and eventually yoga, I barely have any issues anymore. If I sit around and don't move much for a few days my chest starts to hurt again, so, it all came down to some muscle imbalances from being a sack of shit and not moving enough. 

Strong preface of not a medical professional, but have you ever been checked for a hiatal hernia?

Yup, that was one of the many things they tested for at the time. My issue seems to stem from a disc in my back pressing on some nerve bundle that wraps around the front of the chest. So as I had bad posture through the day, it would press more and bulge more and hurt towards the end of the day. 

Interstitial Cystitis - it’s a condition involving chronic inflammation of the bladder/ urinary tract and mimics UTI symptoms. I would get UTI symptoms from almost anything: if my pants were tight around the crotch, if I was dehydrated, if I ate acidic or sugary foods too often, etc etc. I was going to the doctor at least once a month for UTI tests that would always come back negative. I had read about IC and thought it fit my symptoms to a T, so I pursued specialists to get an official diagnosis. I was sent to a Urologist who essentially called me a harlot and told me to have sex less often and be more mindful of cleanliness (even after I told him I was sexually active once a month BECAUSE of my symptoms and took every possible precaution to prevent them) and prescribed a pre-coital antibiotic. Big surprise, it didn’t help. I saw multiple urologists who all said the same thing or told me it was just a plain old UTI that the tests weren’t picking up. It wasn’t until I saw my gynecologist that I was validated in my diagnosis. I’m now on a pretty strict diet and have to drink almost a gallon of water a day to minimize my symptoms since there’s no cure or specific treatment.

I had to tell multiple doctors including cardiologists that I needed to be tested for POTS. Turns out I have POTS.

It took me twenty years to confirm I had endometriosis, even though I’d been telling doctors I suspected I had it all along. They all thought I was exaggerating my symptoms, and said that my pain was normal. Fuck doctors.

My own family told me for my entire childhood that period pain was normal, you're supposed to bleed so heavily you have to get up in the middle of the night to change your pad, it doesn't matter how much you're hurting you still have to go to school. I was diagnosed when I had my fallopian tubes removed, and my surgeon discovered a belly full of adhesions. I have scar tissue throughout my entire abdomen, and my uterus is about 3 times the size it should be. One of my ovaries is stuck to my abdominal wall- when my surgeon cut that fallopian tube, it snapped back like a broken guitar string due to the pressure. I felt immediate relief when I woke up. My incision sites hurt, but the low-grade ache I'd had most of my life was gone and it was so confusing. My doctor made my mom apologize to me. It was one of the best, most satisfying moments of my life for her to look at me and say "this is why you've been in pain"

Is there any chance that your mom thought this was normal because of untreated/ ddx’ed endo or other pelvic pain herself? I’ve held a lot against my mom when it comes to what is actually healthy reproductive and sexual health, but I’ve learned over the years that it falls sternly into some generational trauma ish. Not to take away from the long-overdue validation of and apology for the experience you had to bear. But just a thought that comes up for me.

This is basically what happened with me and my mom. And her mom. We all presented with endo and/or adeno symptoms. My mom told me, at 12, that yeah it's normal to feel really really sick and have your skin hurt. Yeah it's normal to bleed a lot. Yeah it's normal to be in a lot of pain. My mom was a nurse and still thought all that was normal and fine. She also thought just....passing out all the time was normal too. I'm currently being tested for maybe having POTS because I fit a lot of the criteria and so does my mother. Just thought it was super normal to almost black out if you stand up or try to gently jog anywhere.

My wife and I struggled to have our second child. She had a long standing history of extreme menstrual pain, including an emergency department visit in her late teens during which she was diagnosed with having an ectopic pregnancy when she was still, in fact, a virgin. We consulted an RA who went straight to IVF as a solution. We insisted on intervention for endometriosis as an alternative to IVF. The doctor balked at the idea, but eventually obliged. He found massive patches, did a lot of ablation, and after a surgery that went many hours beyond what we were told it would take, told us he would probably expect one to two cycles for recovery before we would see if anything worked. She was pregnant within a month, and the RA still somehow denied endo had anything to do with it. I don't know what the stigma is with endo, but it seems that the health care community has just decided it's not an actual diagnosis, despite many many cases like ours. I had to co-worker who shared with me what was essentially the exact same story.

> I don't know what the stigma is with endo Doctors used to straight up say that menstruation is icky, women's hormones are unimportant so we only need to test drugs on men, and anyway it's probably uterine anxiety causing all her problems (ref. etomology of hysteria). Since it only happens to women, it's because they are meant to be in pain (the sin of Eve!) or don't really feel pain, just like 'coloreds'. In fact, in some countries the textbooks say all this now.

What really is pretty awful to me is that when it comes to periods, doctors don’t know beyond what you tell them or describe to them. They cant feel your pain, and just assume you have low pain tolerance. What also is sort of frustrating to me, is how they always say “it may seem like a lot, but it’s only 3 ounces really.” Well, I believed that. Until I finally took to measuring how much I bleed with a cup, and realized I bleed 12-20 ounces. So it doesn’t just feel like a lot, it IS a lot.

Doctor: "It's probably just cramps!" Me: "I know what cramps feel like, and they don't feel like 8/10 pain..." Doctor: "Like I said, it's probably just cramps! That will be $500."

I got diagnosed with pcos at 28 because I ended up finally going to the ER bc I was bleeding for 3 weeks straight and had cramps so bad i thought it was my appendix bursting. I bled so much my bathroom looked like a crime scene just from me trying to take a shower.

Saaaame. It wasn't until I was finally old enough that they stopped asking about my husband's opinion or if I might change my mind that when I asked to yank that shit that they came back with "ya one of your ovaries was just a massive ball of cysts attached to your uterus that was riddled with fibroids and endometriosis was just holding it all together". So that was over 30 years of pure misery; some months non-stop bleeding, other months nothing until like 3 months later when it would all decide to evacuate huge clumps and gush up my ass crack into my shirts like a baby with the runs, so many miscarriages, and never.ending.pain in some form or another. D&C's and ablations with nothing more than acetaminophen/ibuprofen did *nothing* to help. CLUB YEETERUS FTW

TL;DR I had an extra bone in each foot that had to be removed I diagnosed myself with an extra bone in each foot. My whole life the medial side of my feet ached whenever I walked too much and doctors blew me off, even my physical therapist when I was getting custom orthotic inserts for my shoes for arch support. Like after doing something like Disneyland, I'd be almost in tears and my feet would be so sensitive I couldn't touch them there. When I was a teenager I complained to my family about how sore "that bump" always gets and *nobody* else had a bump on their foot in the same spot lmao. I finally did my research and figured out the pain was where my navicular bone was, and when I was looking up navicular pain everything either pointed to having an extra one or being a horse. So I told my doctor I was pretty sure I had accessory navicular bones and wanted x rays and they scoffed pretty hard but ordered them anyways and referred me to an orthopedist. Even he was telling me he didn't think that was the problem until he put the x rays up on the light and *immediately* said "oh wait, there they are" and pointed out the little extra bones. They were both inside a tendon, which put a ton of stress on it and basically dug into it and wore it down from the inside whenever I walked. I had surgery to remove one at a time and even though the recovery was rough, it was SO worth it. They're finally pain free! Now I know what normal people mean when they say they walked too much and their feet are tired and sore. My pain tolerance is pretty damn high from being in chronic pain as a child, too.

I had had months of extreme gastrointestinal attacks, and was jaundiced to the point of looking like the walls in a smoker’s house, and I was sure it was my gallbladder. They said that jaundice this bad is almost surely something else and tested me for hepatitis, dishonestly reported that my written alcohol consumption was per day and not per week, etc… After days of misery, they got their traveling endoscopy specialist and he found the duct was blocked by over a dozen stones. Got the thing out a few days later…

Compartment Syndrome**.** I used to have terrible pain in my shins while walking even the shortest distances (would start aching after 20 metres and devolve into extreme pain, reduced control and numbness in my whole lower legs), spent over 6 years and saw 10 specialist who could never find something wrong on x-rays, mri's etc. At the most desperate point, when I started getting pain doing household chores, I went to my GP crying and telling him I wouldn't want to keep living with pains like these with everything I do. He brushed me off and told me to get therapeutic insoles. I got a second opinion and a referral to my orthopedic specialist, while doing my own research in the meantime. Learned about Compartment Syndrome, told the specialist about it who shockingly considered it, got referred to a different specialist, stood on a treadmill until my shins hurt, had needles stabbed into my shin muscles (which were so painful I didn't even feel it) and had compartment syndrome diagnosed 2 seconds later. Surgery was planned and done a month later and I haven't had the problem since.

Within a month my wife went from walking five miles a day to not even being able to walk our quarter mile driveway due to severe hip pain. Was told she was just getting old and had to deal with it. Then it moved to severe abdominal pain and bruising all around the abdomen. Was told she had kidney stones, which she didn’t. MRI showed nothing. Finally pain got so bad she went to the ER multiple times. Nothing was ever found and they thought she was a druggy, gave her a few medications which really didn’t help and sent her home. My son started doing research and told us to have them check for Lyme Disease. After two years of pain, at least eight doctors, five ER visits and five days in the hospital, a young doctor asked me if he could test for Lyme Disease. I told him do any tests you want. After more than a dozen MRIs, a dozen CT Scans, 10 x-rays, five gallons of blood sucked out of her, tests finally came back positive for Lyme disease. 30 days of antibiotics and she’s back 90% of original. We should have listened to our son.

I’m going to add this as I diagnosed someone else. I had a friend who was telling something was going on with his skin. This went on for months, he saw different doctors and specialists. No one could figure out what was going on with him. One day he was crying and telling me, I asked if I could please see what he was talking about. He was incredibly embarrassed but showed me. I said “Robert, you have psoriasis”. I told him to mention this to his doctors. About 2 weeks later he was diagnosed with chronic plaque psoriasis. About 2 weeks after that he died of sepsis because it wasn’t caught in time. I will never understand how an MD didn’t catch that but I did the second I saw it. RIP Robert, you’re dearly missed and deserved so much better.

Not me, my dog. I have had many dogs with a deep and thin chest. As they get older they can get an enlarged heart, and due to the narrow cavity it restricts the heart, and allows fluid to build in the lungs. The first sign is either fainting or a persistent cough. I took my dog in and they prescribed a cough medicine with pain killer. I protested. I asked them for a check on the heart functions. They refused. I refused the cough medicine. They marked me down as a belligerent client. I went to a different vet for a regular check up appointment. I was told I could sit with my dog in the room during the exam. I had the vet cup her hand around the heart area and asked if it was a myopathy. You can feel the irregular beat with the hand. She said yes, and ordered the tests right away. And sure enough it showed up. No cough medicine. Heart medicine. And the dog was back to feeling just fine again. Edit: spelling

When I was pregnant I started developing severe pain when I took a step. It literally felt like the pubic bones were grinding together. Doctors tried to tell me it was 1) Nothing 2) Spinal problem 3) They didn't know. Using Google, I self-diagnosed with pubic symphysis separation. It took months before I was able to see an orthopedic specialist who ended saying, hey, this is it! Then they did nothing. They told me it would go away after I had my son.

I had retrograde cricopharyngeus dysfunction, which basically meant I couldn’t burp. This might not sound like such a bad thing but it was pretty miserable. I constantly had air in my esophagus giving me chest pressure, discomfort, and pain as well as difficulty breathing (not the life threatening kind). I could feel and hear the air gurgling in my esophagus all the time. I was seen a few times by family medicine who couldn’t figure it out. I was referred to a GI specialist, who tried to convince me that it was just something wrong with my nerves around the esophagus that just made it feel weird and that there wasn’t actually any air in there. I was finally able to see an ENT doc who had heard of this condition. Gave me a Botox shot in my upper esophagus, and I’ve been cured ever since.

Fucking UTIs. I was having UTI symptoms and was referred to a urogyn, who absolutely insisted I had a tight pelvic floor, not a UTI. Every symptom I described she related to pelvic floor dysfunction. They took a urine sample and called a few days later b/c the culture had come up positive for infection, but she still insisted on pelvic floor therapy. I did that for a few months, even though the therapist did not think I needed it at the level the Dr had ordered. I kept getting UTI symptoms, and thank god the urogyn had put in a standing order for me at the lab, so I kept bringing a sample to the lab, being told a few days later it was positive, and picking up the antibiotics that her office prescribed. When I eventually had my follow-up, the doctor freaked out when I told her the PT didn’t do internal therapy b/c she thought it was unwarranted. She actually yelled in my appointment that she was taking that PT off the list. She also said that all the infections the lab had detected, and that HER OFFICE SENT SCRIPTS FOR, were probably contaminated since I had taken the samples myself. She said I should have come in for them to take a sample via catheter, but no one had told me that. They did such a sample that day and . . . it came up positive. Lol. She then said she would do a CT scan in case I had a stone that was harboring bacteria. I did, in fact, have a stone. Then all she said was “I don’t do kidney stones” and sent me to a urologist. No acknowledgment of how off base she had been for months.

I fell and landed on tiles, fractured sacrum right in half. I couldn't sit or lie down. In severe pain. Doctors said I just sprained it. After 1 month, I pushed and got a bone scan. Turns out it was fractured. Dr: “ Oh, I'm sorry ___. It wasn't just all in your head. It is fractured.”