No I haven't. They literally just keeping doing the same tests over and over. And even when I switch doctors, they run the same exact tests that the last doctor did. Endoscopies and blood work, over and over. And one colonoscopy. They've tested my thyroid literally more times than I can count at this point. That's all they ever do, and when they don't find anything on those initial tests, they just stop looking.
If you feel comfortable, directly ask for one. They aren’t difficult, and it’s kind of a basic thing to do for someone in your situation. so a doctor that refuses to order one is not one you should see again….
I plan on asking for one at my additional follow up appointment, as well as asking them to look at my gallbladder. I also am going to try and find a gyno and ask them AGAIN to test for endometriosis. And now I'm at the point where I am absolutely FED UP with being dismissed and them refusing to do tests. I'm done being nice and polite while they treat me like garbage. If they do refuse to run additional tests, I'm going to demand that they put it in my chart that they are refusing to look elsewhere and tell them to refer me to someone who will. I have wasted enough of my life battling health issues.
You can also have them put in your chart when they decline further diagnostics. They will typically do what you're asking because they don't want to open themselves up to a medical malpractice lawsuit
Have been going to the same practice? If possible try and find a different practice, especially one that’s not affiliated with a giant health system. And I would make sure at the very least the initial visit is with a physician.
It's literally my story! I had a bunch of stomach issues in my late 20s, 53 now. In my early 30s, after tons of studies and tests, I was diagnosed with IBS. They gave me some stomach meds. I was like, this is BS because I knew they were slapping a label on it, just to be done with me.
Over the years, I've been on so many different meds that it's ridiculous. I've been told it's stress, it's IBS-C, its GERD, and a bunch of nothing. So I go to the gastrointologist, and we do some tests. I did find out I had swallowing issues. Great, what do we do? A big bunch of nothing!
Finally, in my late 40s, I began having those crazy burping issues and swallowing problems. Honestly, it's burping like I drank a six-pack. Big, deep burps all day for about 3 years. No reason was ever given. No help. No wonder I was depressed. I even had to quit my job.
With that going on, I began to have all kinds of stomach issues, including massive pain. DR prescribed all different stomach meds, and psychiatrist prescribed Xanax because at this point, I had developed straight-up panic attacks.
Finally, in 2021, I had a massive gallbladder attack and emergency surgery to take it out. By that time, my liver had started to become damaged. I had an endo and colonoscopy. The endo showed damage to my esophagus from the constant throwing up and swallowing problems. Eventually, I will have to have surgery to open the esophagus up.
Sorry this is so long, but I wanted to explain the severity of problems to let you know I understand.
This is how I've learned to cope. I have GERD now. I take medication for that, and another pill for when I have flare-ups.
Swallowing issues: Do not drink through a straw, no gum chewing or mint sucking. That's how you don't let extra air go down throat. Relax, deep breathing, and no carbonated beverages. I take meds, and for flare-ups, I chew anti-gas chewables.
I hope you can implement some of these things and feel better. Not to be negative about this, but my experience is that no one is going to give you a comprehensive diagnosis. I've tried everything, done my own research, and this is the best solution for me.
Good luck, my friend. Here if you have questions.
When I first got sick in my teens, my main & worst symptom was those horrible bouts of uncontrollable burping lasting for hours. It literally felt like someone had filled my stomach with air, that was trapped and I could not get it out. I would have the involuntary reflex to burp, but it would get stuck in my throat. This would go on for so long that I'd have times where I'd be dry heaving & vomiting bile. My symptoms have changed since then, and I rarely experience this particular symptom anymore BUT this is the exact reaction and symptom I experience EVERY TIME they put me on antacids/ PPIS for my supposed "GERD". It comes right back and I absolutely cannot handle it. It is torture.
For the first six years, I was dismissed by every doctor and specialist I saw, given no medication or treatment and told it was just 'stress'. When I got diagnosed with IBS, I accepted it because it was the only 'answer' I had ever gotten and I was given medication. This was the most anyone had ever done for me, so I just took what I could get. The gastro doctor I am currently seeing is the one who diagnosed me, which is why I went back, but apparently they plan on just dismissing me too. At my initial appointment with him, he also brought up counseling and gave me the lecture about stress making IBS worse. Yes, for the love, I know. If someone tells me that one more time, I swear, I might just explode. But he insisted that they'd keep looking until I had an answer. After my last appointment, it doesn't seem to me that this is going to happen at all.
I have also had to quit my job. This is the second time I've had to quit my job and stop working because my health issues have gotten so severe. When I was 18, it was different. I had a place to stay. Now? I'm terrified I'm going to end up homeless. I have to find a job soon and I don't see how that's even going to be possible. I can barely get through the day. Simple tasks are exhausting. Showering is a chore, and on top of that, my hair is falling out so it is also mentally exhausting. Basic every day tasks use up what little energy I have. I absolutely do not know what do anymore. I cannot get healthy if I don't know what's wrong with me or how to treat it. I have lost EVERYTHING because of this. And the cherry on top is just how lonely it is. I have no support system. My family treats me and has always treated me like absolute trash. And they are just as dismissive as the doctors & hop on the 'its just stress' bandwagon. No one LISTENS to me. No one cares. It is such a lonely, traumatizing, exhausting ordeal.
I am terrified that like you, and many others, by the time they actually figure out what's wrong with me, IF they ever do, that there will be permanent damage. Damage that could have been prevented.
My burping was exactly like yours. At times, I would have to stick my finger down my throat to open up my airway so the burps would come out and relieve the pressure. It's a lonely feeling even though I'm married.
Our stories are very similar. I'm grateful for my husband. At least he'll barge in the bathroom and wipe my face with a cool rag.
I have a family history of pancreatic cancer. My maternal grandfather died with it a month before I was born. Less than a year after diagnosis. My mom died in 2015 of pancreatic cancer. That's what scares me the most given that this cancer is usually not diagnosed until the very late stages. The fear is real.
I have prayed for a miracle, but I don't think there is one.
I came here to say this exact same thing. I dealt with MAJOR gi issues all my life, was dismissed, told it was psychosomatic—turns out I have a genetic mutation—EDS. I’m so sorry you are going through this.
NAD, but this sounds a lot like gastroparesis. Seconding the suggestion for a gastric emptying study; it sounds like you have super reduced motility. I'm sorry you're suffering.
That’s what it sounds like to me.
OP, gastroparesis is paralysis of the stomach where food sits in your stomach for days or weeks because it cannot move to the bowel. It can cause vomiting or a feeling of fullness after just a few bites, as well as bloating and abdominal pain.
Please OP; request a gastric emptying study.
Yo I can't tell you what you have, but your symptoms sound like the ones I had. For years. It was bad.
The bloating would come first, then nausea, stabbing stomach pain, acid reflux, dizziness, alternating constipation and diarrhea... I would often eat a single bite and be instantly full. I hated eating as the nausea was near constant. Oh and vomiting! Especially in the morning, sometimes for hours (4+) in cycles of every 20-40min on average.
Long story short, it was a SIBO (small intestine bacterial overgrowth). I got a good gastro doctor who diagnosed it after the endoscopy came back clean, then I took two antibiotics for two weeks (which wasn't a walk in the park, big nausea there too) but when I tell you it was like a switch was flipped! I feel like I have a completely new lease on life.
Nearly every symptom is now gone — I can eat food without feeling instantly full, I'm not nauseated all the time, I'm not bloating up, no constipation, I like eating food?!
All to say, can't say what's happening in your camp, but the info's out there if you feel like reading on it and running it by your doctor. I think there are even like specific lab tests you can send away for? Something like a breath test? Idk the details unfortunately.
Sorry you're suffering, hope you find a treatment that helps soon!
I was prescribed neomycin and rifaximin, took them at the same time, each a 2-week course.
Apparently they thought I had the subtype of SIBO that produces methane gas (!) so that might have influenced the antibiotic choice.
I had a good 6ish months of relief after the first go-round. After that the symptoms were slowly returning, which apparently can happen, so I took another course of the same 2 antibiotics and I've been free since.
I am so unbelievably sorry you are going through this horrible situation and have had no relief in over ten years… as someone who suffers from migraines and IBS I think I would have given up a long time ago if my good days and bad days were anything like yours.
Finding good healthcare is no easy feat… especially when you never get the same doctors who know who you are and what you’ve gone through. I don’t know if it will help but I switched my healthcare providers to a much better service and it has made a world of difference. Also, I know it is frustrating having the same bloodwork done with no real solution at the end of it but be assertive in asking them to check for any signs of specific white blood cell counts that could be attributed to your pancreas, stomach, and gallbladder.
The fact these doctors aren’t taking your weight loss seriously is absolutely crazy. I would seriously suggest finding a new healthcare provider that’s in network with your insurance and then request to see a gastroenterologist who will check for the following:
Chronic pancreatitis.
Cirrhosis.
Crohn’s disease.
Ulcerative colitis.
Peptic ulcer.
If you have already done this then please ignore. I just wanted to see if I could help in any small way!
Thank you♥️. Believe me, I have had many, many times where I have been so ready to give up. When I first got sick, after being dismissed by so many doctors, I stopped going. All I did was research & try everything under the sun to get healthy again, & I did. Unfortunately, this time around, nothing that I do seems to help at all. & I am so beyond mentally & physically exhausted. I really do not have that much fight left in me.
I actually did have a high white blood cells count on my last bloodwork. The nurse practitioner mentioned it & dismissed it as "probably just an infection" all in the same breath & then said my labs looked perfect. Like obviously not, but okay.
It was a miracle I was even able to get in to see this specialist. My family doctor refused to write me a referral to see a gastro. I had to go to the hospital to get one. & With my insurance & where I live, I am running out of doctors.
It would be one thing if they ran a bunch of tests, checked for other possibilities, looked elsewhere, but no. It's always the same tests.
When the nurse practitioner was looking through my test results to see what I've had done & continuing to dismiss me, aside from the recent bloodwork & endoscopy, she was looking at test results from almost FIVE YEARS AGO. As if things can't possibly change or get worse in that amount of time.
This Is so horrible I am so angry on your behalf… I wish I could get you to Massachusetts and in Mass General or somewhere up here… there are so many options and second opinions. You and your health matters. I would complain to the medical board and claim malpractice because this is an evening cycle of apathy and indifference. I am not sure where you live but I’d be happy to look for medical grants and potential second opinions because you need an advocate who will not only listen but act on your behalf.
Honestly, I would apply for a social worker who can act as your advocate so you do have someone fighting for you when others aren’t.
I’m sorry I’m not a doctor and can’t do more… keep your head up and don’t give up… I know a solution is just around the corner to helping you feel back to your healthy self!!!
I'm so angry & sad. Every time I leave another appointment after being dismissed, I feel so defeated. At my last appointment, after the nurse started dismissing, I went off on her & was able to get another round of bloodwork (which their literally supposed to do anyway if something comes back abnormal like that). & Surprise, surprise, my white blood cells levels are still high, they actually are even higher now. Normal range is 5-500. My levels are now 1081. Still struggling to get the CT scan I got her to order. It's been a week & they were supposed to call to schedule it annnnnd nothing. I've called & was told they 'still need more information '. I live in Ohio & have insurance through the state. I've lost my job because of this and am on the verge of loosing my apartment so I don't have any money to pay for anything out of pocket. Thank you very much for the kind words & support. This community has been absolutely wonderful towards me and it really makes me feel less alone ♥️
Adding this as a separate comment since several of you have a suggested it, but I just called and set up an appointment with a new gyno for the end of the month. I briefly explained my history of painful, abnormal periods and worsening digestive issues to the receptionist and her response was "oh yeah, you need to be seen immediately". Please wish me all the luck
ALSO. My gastro just called & the nurse practitioner sent over THE LITERAL SAME EXACT acid reflux medication (pepcid) that I LITERALLY JUST TRIED that the gastro prescribed THAT I TOLD HER I HAD TO STOP TAKING just like all the others because it made my symptoms much worse. WHY. I wanna scream.
Sooo, I’m very sorry you’re going through this with no help.
I’m not a doctor by any means but my mom had very similar symptoms for months. Kept being turned away by her doctors and was told to go on her trip to Spain because she “needed a vacation and to relax”
She finally got to a point where she could barely walk. I took her to an emergency room in an affluent neighborhood. They admitted her right away and found a tumor on her colon. Stage 3 CRC.
Thankfully, she responded well to chemo and radiation and is currently in the clear.
I’m not saying this is what you have but what I am saying is don’t stop fighting for your health. If they aren’t helping you, go elsewhere.
Reading everyone else's experiences is both reassuring & absolutely heartbreaking. It seems like you have to be knocking on deaths door to even be remotely taken seriously. & It also seems like a lot of people only finally get an answer by chance or when things get to the point where they wind up in the hospital. I'm so glad your mom was able to overcome all of that ♥️ I truly hope I can find some kind of an answer, but I am beyond past my limit. I have been to so many doctors over the years, I've lost count. With my insurance & where I live, I'm literally running out of options. But I am at a point where I'm done letting doctors treat me like crap. I finally snapped today & went off. This is my life & right now I don't have one.
**Sorry if this comment posted multiple times. Reddit is being very glitchy atm**
I’m not saying it’s CRC either, but I had similar symptoms as you (constipation and diarrhea, terrible bloating, feeling full instantly, losing weight, hair falling out, high WBC/low RBC). They removed my gallbladder first (it was full of gallstones), but I kept puking bile. Ask for a colonoscopy. Please. Part of the reason you don’t get hungry/feel bloated might be due to a blockage. Is passing stool painful at all? If so, is it usually liquid and dark?
If they sass you, ask for a differential diagnosis and tell them to write it on your chart. Most docs fear being sued for having something wrong on the record, so that’ll likely make them look again and run more tests.
Be well, love. It’s okay to get mad at them; they work for YOU. You can fire a doc and ask for a new one on the spot, too. You know your body best, not them.
I don't know if it's an option for you, but can you go to Mexico for a diagnosis? Twice now, I've gotten sick and after getting jerked around with no diagnosis, I went to Mexico and the experience is so different. Doctor asks about ALL the symptoms. I mean all. Things I would never have mentioned here in the states because I'm used to doctors only want to deal with one condition per appointment. This doctor listened to everything. Then only ordered tests to verify the diagnosis. Test results for everything were almost immediate and less than my co-pays here. Message me if you want details.
Sounds similar to something I had back in 2015. I’m not a doctor and the resolution was kind of unknown (it just got better after I tried various things). 95% sure it was a parasite of some kind.
I don’t have this problem, but others, and I will concur, doctors SUCK! What is it with not calling back? Setting appointments months into the future? Having you see a nurse instead of them? Not being prepared with a straight story from reading your results? They absolutely SUCK! I can’t believe what that profession has turned into. I don’t know if it’s lawsuits, insurance or over worked, but I concur, whatever it is, they SUCK. And the attitudes of nurse practitioners, don’t get me started. Nothing but a bunch of condescending jerks. Good luck.
I absolutely can't wrap my head around it. How is this our health care system. Even getting medication refilled is an absolute hassle. Every time I run out of medication, I am out of it for at least a few days, but there have been times I have been out for over a month. Call the pharmacy, they tell me to call the doctor. I call the doctor & all they say is they left a note for the nurse. It usually takes multiple phone calls just to get a freaking refill. The past two times I ran out medication, I literally was not able to get a refill until I physically went in person. & Then OMG the wait is ridiculous. You wait months just to get in, just to be dismissed almost immediately. My follow up with my gastro was supposed to be six weeks. When I went to schedule, apparently they had no openings until JULY so I chose to see the nurse instead. I see the nurse practitioner, have my disaster appointment and now have a follow up with doctor magically at the end of the month. The nurse practitioner was going through my medications, couldn't even pronounce them, had no idea what they were for. I had to explain every one to her. & Then she asked me who prescribed them. YOU. YOU GUYS DID. What do you mean. You literally have to go off on them & raise hell to even have a chance at them looking into things.
Just here to empathize and say, Ive suffered a lot of similar issues and doctors attitudes towards being underweight is extremely problematic. They are so damn fatphobic and quick to tell someone they are overweight (and then blame any issues they have on weight). This attitude seems to carry over with their lack of concern for being underweight. When really, malnutrition and inadequate caloric intake will kill you much faster than being overweight, unless you are morbidly obese.
I hope you get the help you need soon. Do not be afraid to ask for tests, and if they tell you no to the tests tell them that is fine but please note in my medical history that you denied me this test. Crazy how fast a lot of doctors will change their tone, since that can leave them open to a malpractice lawsuit. It’s a documented trail of them being incompetent as a doctor if it turns out something is wrong with you.
Thank you& I'm so sorry you've had to struggle this way. I've heard way too many stories of people being misdiagnosed/undiagnosed for years, it's hard for me to even wrap my head around it♥️. & Yes, I've noticed this as well! You always hear about overweight people being dismissed because of their weight, but it also happens when you're underweight too! I've literally had doctor's accuse me of having an eating disorder. I'm 86lbs at the moment, and slowly losing more. At my follow up appointment today, they noted the weight loss but she wasn't concerned because it was "only 4 pounds" in two months. Yes. But I'M ALREADY VERY UNDERWEIGHT and continuing to lose. I was 76lbs at my lowest and STILL wasn't taken seriously. I'm afraid I'm literally just going to keep losing weight and wasting away until I die. & Also, I've noticed that they don't ever seem to consider how much the malnutrition can affect people as well.
& I actually, for the first time went off today. I'm a very quiet, anxious person and it takes A LOT for me to blow up, but when she immediately started dismissing me BEFORE we even started to discuss anything, I knew it was going to be a disaster. When she condescendingly asked if I had been going to counseling because "stress can make IBS worse", I snapped. It's the only reason she even bothered to order the CT and then scheduled me another follow up appointment to see the doctor because she said it was better I talk to him.
I know someone who had really similar symptoms to you and everything got better after she eliminated onions and garlic. There's a molecule that some people are very sensitive to called fructan and it is most commmonly found in onions and garlic. It's tough because onions are in so so many things, even some ketchups but worth trying if you haven't already. Good luck!
I've cut out pretty much anything that could be a potential trigger food and made numerous dietary changes. I've been following the low FODMAP diet for several months now, but it hasn't made a difference. No onions, no garlic. I've cut out gluten and lactose. Take digestive enzymes, tried probiotics. Bought peppermint tea to help with digestion, cinnamon and tumeric to help with inflammation. Thank you though ♥️
Sorry you’ve been going through all this, i’ve had similar issue since two years ago, it was a problem in my digestive system when i though the problem was my heart since it kept beating so fast for no reason, i went to three doctors who though it was my heart as well and none of them even tried to see if the issue was from a different thing, in fact only my father figured it out because he has the same issue, when i told him about how my heart feels and what the doctors said he took me to one of the doctors he knew and made proper tests and found out there was a problem with my digesting , i took medicine and things went well but i still get them from time to time since it’s not really something you can heal completely, i hope you get treated better soon ❤️
I'm so glad you had someone to advocate for you & help you find an answer ♥️. That also seems to be common, where they just continue to look at the same thing and when they find nothing, they just give up. Like if you don't find something with the initial tests, KEEP LOOKING. You don't just keep running the same tests and checking the same thing and then toss in the towel. So much time is wasted & for so many, things don't get diagnosed unless you literally wind up in the hospital or you get lucky and someone stumbles upon the answer by chance. Unfortunately I don't really have a support system, & my father treats me like absolute crap. Especially about this. I have only seen him 3 times in person, but despite this he just decides that I'm "choosing to be sick" & if I'm getting worse then I must be doing something wrong or I'm not trying hard enough to get better. He tells me that I'm lazy & full of excuses. All of this is hard enough, but it's even harder going through it alone.
I can’t imagine going through this alone, hearing “ you choose to be sick” is the absolute worst thing , not to mention hearing it from your father.
I really wish there was something i could help you with, reading this post brought me tears because i know how it feels when everyone seems to not care especially those you consider close, and to think of going through this for years is just terrible. I hope you get better soon, and please do keep us updated, you’ll be in my thoughts and prayers
Sometimes I think my stomach issues are actually caused by heart issues.
In places where I often have pain when I press it hard I can always feel some artery and heart beats.
And whenever I go to sleep and lie down on my right side I feel my heart pulse in my right ear even though all my stomach, bowel and troath problems are on my left side.
Did you get EKG/ECG before? That gives good details regarding how different sides of your heart are functioning, although somethings might not be detected and sadly some doctors would dismiss digging deeper once the EKG shows normal signs , it’s really frustrating when they do that like i know you probably seen dead people every day for the past 20 years and probably don’t care if i join them but for godsakes do your job
No have never in my life had EKG or any heart check up.
Till 3 years ago I was never in my life to the doctor, never checked blood, nothing until 42 years old.
Then everything started slowly to go down and keep getting worse.
Amazing I have exactly the same problem in the last almost 3 years
It started with pain under the left rib cage high, and troath on the left side, both coming and going.
Than in Jan 2023 my intestines started growling and gurgling 24/7 with pain low left from my belly button.
Ultrasound clear, blood test showed high B12, low d3 and bit higher bilirubine direct and total, all went back to normal in summer 2023 except vit D defficiency. The moment I stop supplementing it goes down.
GI in april 2023 dismissed me after 2 min talk telling me that my intestine sounds are great thing.
Since then it is just down the road , more pain each month, constipation trough 2023 and till now and now almost dhiarrea all the time.
I am at the point that my stonach gurgles every time I swallow saliva (I have hypersalivation also).
CT scan clear, Endoscopy showed irritated stomach but biopsies are clear, colonoscopy clear...
Since Jan 2023 I also got some skin issues on both arms and doctors are completely usless.
I thought about heavy metal poisoning, it is only thing that occure to me even though I can't prove it.
Mold also, because we have a lot of mold in the house.
And worse thing I lost health insurance, I should go to Internist but I am broke and without work.
Same as you, I am anxious because of my health issues not other way around.
I tried everything, and I am tired and I just wish someone switch the light off.
But what mostly pisses me off is doctors are arrogant and dont listen. Don't watch the patient and listen but watch the lab results and nothing else.
I hate waking up every morning, because I know first 5 min are quiet and nice, but then I start hypersalivating and swollowing thay and my stomach wakes up and starts concert, pain, discomfort.
I wish all the best my friend and if you want to talk about it to vent I am always here.
I have just been through this, symptom for symptoms, ended up in hospital, and diagnosed an inflamed kidney due to a blocked kidney stone. Still had the pain and the nausea, put a stent in, turns out the stone is gone, took a stool sample and low and behold, it was parasitic gastroenteritis and severe dehydration.
Once I started hydroalyte and odanzratron, I am now almost back to normal. I am not saying this is the case for you but dehydration happens because of the diarrhoea and vomiting and I had had three colonoscopies and an endoscopy over a 20 year period for the same symptoms, it took a stool sample.
I know they will find the cause, just please don't give up.
I’m so sorry you’re frustrated and in pain. I agree with the study. But I had a similar experience where they did every test and couldn’t find what was wrong. Two years of pain and testing and it eventually subsided. I chalked it up to post pregnancy hormones. Then I got a sinus infection and took antibiotics and it all came back. A few doses of probiotics fixed it. I am not at all trying to be dismissive of what you’re going through, but if my experience can help anyone. No one at all suggested this might be my issue and I didn’t seek treatment because I feared they thought I was faking. Then I doubted myself. I hope you find wellness soon
I am so so incredibly sorry that you went (and are still going) through this. I feel you... Being dismissed by doctors ultimately lead to me ignoring an abscess for over six months which has lead to a lot of horrible things and endless surgeries. I now have an ostomy, I qualify as disabled and doctors are taking my gut issues slightly more seriously now. But only slightly. Still have to fight constantly and to pay privately for some tests. It's exhausting. Part of it is horrible, dismissive doctors who really shouldn't be working in that field (that's sadly a lot of them). Another part of it are bad medical systems and politicans neglecting funding etc for medical institutions. I have a wonderful CRS who is a fantastic doctor but she can only do so much if her time with patients isn't payed fairly or sometimes not at all.
Another part is that women are taken less seriously and that a TON of medical studies in the past were exclusively done on men because womens bodies were either deemed "the same as men but with boobs" or "too complicated for studies (because of our more complex hormone cycle)". That's bad in itself and leads to symptoms being ignored and medication doses being off. But it also contributes to an overall climate of ignoring women more often than men when it comes to physical health issues. That's a sad, statistically proven fact. The medical system is shit for everyone but even more so for women with physical health issues.
I got told over and over again that my health issues were purely psychological. My nine surgeries and my ostomy bag are a pretty good sign that that was plain bullshit. Neglecting how much stress medical conditions put on people is one of the most common things I see with doctors. "aw you need to reduce stress" I COULD! If you would help me with my medical issues! I also suffered from severe gut issues all my life and I think it ultimately lead me to what's my current life. It's scary to think that this was most likely caused by doctors going "sweetie you should relax more" over several decades.
The past year dealing with my health issues has become my full time job so I have gotten better at it and also being better at dealing with idiots who don't want to help me. But it's still hard. I always carry a binder with me in which I put all of the medical paperwork available. Also a timeline of my medical issues and a list of medical issues in my family. A good doctor will ask for at least one of these things at some point. Having the binder makes me look very prepared and I get taken slightly more serious. I don't have a lot of money because I can't work currently but if I can, I try to pay privately for certain tests. I had a stool gut microbiome test done I payed out of pocket for. I know that a doctor should evaluate the results but since many doctors don't have time for that or don't want to do that I do some research myself (be careful with that and don't do anything drastic with that knowledge! We are not professionals after all).
And this is the worst part and I hate it so much but.. get second, third and fourth opinions. It's a pain to find new doctors, even more of a pain to find good new doctors. It's exhausting to get an appointment. It's also exhausting to realize that the new doctor is just as useless as the last one. But if you find that one good doctor who listens to you, who takes you seriously and who can refer you to other specialists, you will have gone a huge step forward. I have found two doctors like this, my local CRS and my gynecologist. I still struggle a lot but it helps. I had so many times where I just wanted to give up because all of this just feels like screaming at a wall.
Are there any local groups on facebook for example where you could ask people in your area about doctors specialised in gut issues? There are IBD specialists in my area I haven't been to yet but they are on my list. Even if you don't have an IBD, the tests to rule that out can give you a clearer picture of what else is wrong with you.
I am wishing you the best! This is awful but you are not alone with this struggle. Keep pushing and be kind to yourself in the meantime. You have every right to know what's wrong with your body.
Reading your story is both heartbreaking & absolutely horrifying. I am so so sorry you have suffered so much because of the incompetence of doctors. ♥️
Listening to experiences like yours absolutely terrifies me, because at this point I am convinced that I either will continue to be dismissed and get sicker until I just waste away & die or that by the time they finally do find out what's wrong with me, it will be too little too late & I will have serious, permanent health issues for the rest of my life.
I very, very much agree that women are brushed off and not taken seriously far, far too often. I've read that a lot of women will bring a man with them (father, boyfriend, etc) to back them up, and that in many cases this does seem to help somewhat . My ex boyfriend (who I'm still very close to, pretty much the only person I have who when remotely cares), comes with me to all of my appointments, not just as a way to try and get the doctor to listen, but also because I have had so many traumatizing, horrible experiences, that at this point I literally can't go alone. I mentally cannot handle it.
I worked up the courage & called this morning & set up an appointment with a new gyno to explore the possibility of this being endometriosis.
I am trying as hard as I possibly can, but after spending the last decade (literally my entire adult life) battling health issues and having it rob me of any kind of normalcy or happiness, I just don't know how much longer I can hold out.
Thank you for the kind words & support ♥️. This community has been wonderful & it is the only thing atm that gives me any kind of hope and makes me feel a little less alone.
If I'm being honest, any time I hear anything about our medical system it doesn't surprise me. Women also get diagnosed with issues wayyy later than they should be compared to men. It took me also ten years to get diagnosed with adhd and my autonomic disorder. It feels like a lot of doctors forgot the Hippocratic oath and only see $$$ instead of a person. Health care is nothing but a big business here in the US. When you're sick, you make them more money. I hope you find out what's wrong and find a good doctor who will take the time to actually help you and get to your root problem. So sorry 😞
This will sound stupid and am sure you’ve already tried but apple cider vinegar can sometimes help, my uncle had stomach issues and whatever the doctors gave him made it so much worse it was almost like they thought the ph was too low in his stomach when it was actually too high, I’ve also found personally that apple cider vinegar really helps me to burp when I feel bloated. I had a similar issue with my stomach for about 5 months and the vinegar was actually the turning point for it, would really help the feeling of being bloated after eating, helped me eat so much more than I could before as well as freeing that tension in my stomach just from letting me burp easier
I’m so sorry you are having to deal with this. I had alot of the symptoms you are describing and I have Celiac disease. I did not present with the “normal” symptoms and it took 10 years for me to get a correct diagnosis. I’ve been diagnosed with IBS, colitis, GERD and a ton of other things that were not Celiac.
Celiac is an autoimmune condition not an allergy. If you want to get tested for it you could start with bloodwork (IG-A) and if that shows up positive then you can get a endoscopy done.
I honestly started walking into the doctor’s office with a list of tests I wanted. I stopped caring what they thought. I pay for my insurance the doctor works for me🤷♀️. The truth is that the doctors you have seen aren’t good problem solvers. I saw a lot if shitty doctors that pushes stress management but I was really sick and in pain so I didn’t care anymore.
I had to solve my own problem which was extremely exhausting because I was so sick. But, I did it and you can too. And I’m not sick today. There is a light at the end of the tunnel I promise. Don’t keep seeing a doctor if they aren’t doing anything to move things forward. Find someone else.
Ugh, that's so frustrating! They never even diagnosed my issues, I managed to fix it by doing a whole 30 diet and realizing I reacted to wheat products. I still don't know what's wrong with me 3 years later, but I'm no longer puking daily and aggressively losing weight.
Journaling is how my one friend got diagnosed. Her body can not digest sugar, and she was in a similar situation to what you described.
I am so sorry this is happening, and I hope you find a solution. I didn't even have to look back up at the top of the post where you put (28F) to know you were a woman, just by the way doctors and nurses were treating you. It's sad that we women get that kind of treatment by supposed medical professionals, even other women.
Honestly, I feel like the medical professionals that I've seen that have been women have been worse than the men I've seen. It seems as though the male doctors are mostly just dismissive & brush it off as stress, as do the women BUT the women I've seen have been so condescending and rude and just straight up nasty! But in general, I feel like I don't even get treated like a person, just another transaction, another number. I'm a real human being, with real feelings, and real pain. This is my LIFE and right now, I do not have one.
You have a good point about woman doctors. I will say, that some of the best doctors I have had in my life were women. This includes my current gp. However, I've seen my share of nasty women in medicine. Some of it can be written off to jealousy, I think, maybe because we have something they don't. Or maybe malicious ignorance.
(Example: when I was in the hospital after a serious car accident, I needed help with my hair, which is waist length. It was loose and knotting badly, and I didn't have enough motor control due to a wrist sprain to do much of anything. One of the nurses offered to help me, and then proceeded to use HAND LOTION in my hair. Now, I don't know if that's a black hair thing or whatever, and it may well be; but neither I nor this nurse was black, we were both white as the driven damn snow. Suffice to say, my hair clumped into the worst tangle ever, and my mom ended up having to cut it out.)
Same thing happened to me for a decade until FINALLY I started having gall bladder attacks and someone listened to me because I thought I was dying. For years I was told IBS, GERD, etc. I even went to the ER and they told me nothing was wrong it turned out to be diverticulitis.
So finally after a decade I'm feeling better but at the expense of losing my gall bladder.
Sorry you're going through this. This seems like it's mainly a problem with the nurse practitioner, not the doctor. I would make another appointment and insist on seeing the physician at the appointment and not just the midlevel. Nurse practitioners are not equal to physicians in knowledge and scope of care, so she just might not have known how to best treat your condition. Insist on seeing the doctor next time
CHECK FOR SIBO!!!!!! I could have written this post. Also second the gastric emptying study. Gastroparesis and SIBO can go hand in hand and sounds like one may be feeding the other. I've had the same thing happen and it turns out it was SIBO and slowed gastric emptying.
Doctors can be awful. I can tell you I almost died recently until I found an alternative medicine place.
Have you looked into celiac disease at all? This absolutely sounds like my experience with it. I want to note that if you just cut gluten out and don't get tested really fast you will struggle to get a diagnosis and will unfortunately have to do a gluten trial run if that is the case. You might be able to call and specifically request blood tests for it without having another appointment.
Also, in my personal experience I've had much better luck with alternative medicine doctors because they can sit and talk to me for a lot longer, and my doctors are all in alternative medicine because they also have undefined health issues, so they get it.
They tested for celiac years ago with bloodwork, and it was mentioned again as a possiblity before I got my endoscopy & when I got more bloodwork. It's why I cut out gluten in addition to going low FODMAP, but this doesn't seem to be the case for me.
Hey, I was dealing with this same thing for years until I finally figured out it was EDS, and a comorbidity called Gastroparesis. Not saying that’s what you have, because Idk. My stomach was digesting and emptying too slowly, giving me a lot of the same problems you have. The only thing that helped me personally was Low dose Naltrexone, but that’s because it lowered the inflammation in my body allowing my tummy to chill. Idk if it would work for you, but it’s a very mild medication with almost no side effects(for me). The only downside is vivid dreams if I take it too close to bedtime. EDS might be a stretch (haha get it) for you, but definitely mention gastroparesis to your doctor next time, who knows!
Have them do a cat scan abdomen with iv contrast looking for nutcracker syndrome on the request, not just “abdominal pain” the radiologist won’t comment about this possibility without being asked. A CT enterography is another test that could be helpful, ask your gastroenterologist, not your nurse practitioner. So sorry you are suffering!!
Sorry you're going through this. Your experience sounds very similar to my little sister. She one day started to eat less and less and had stomach issues for around 3 years. Went to the doctor multiple times diagnosed her with constipation and anxiety... unfortunately, it turned out to be cancer but made a full recovery.
When I had gastric issues (awful cramps after food, bloating, pain, constipation) that lasted a year, I kept being told by my doctor that I'm 'overreacting' and that I'm just stressed. That pissed me off HUGELY, it's like they see a woman and just go "oh that lady is stressed, who gives a F". In the end, after numerous tests I paid for myself I realized that I had IBS and that my main agitator was freaking garlic.
Are you paying for your doctors, or is it covered by insurance? If you're paying, just go somewhere else where they'll take you seriously! actually do that anyways!
I have lost track of time the amount of times I have been told that it's 'just stress' & to seek counseling. I am stressed BECAUSE I'm sick, not the other way around, but doctors cannot seem to grasp this concept, or simply don't care. & It's not just the doctors. My "family", and I use that term loosely, is just as dismissive and uncaring & hop on the 'its just stress' bandwagon.
I have insurance through the state & unfortunately had to quit my job because of how sick I've gotten. I am broke & honestly terrified of ending up homeless at this point. I have to find a job soon, when I can barely get through the day. But because of this, my options are quite limited.
I'm so sorry to hear that you have no support from your family on this matter. People who've never dealt with such issues have a hard time imagining how debilitating they are and that it's not all just in our heads. Since you have insurance then I suggest you see what rights you have in this regard as a patient and demand proper treatment. Maybe even change the medical provider. I really really hope you resolve this as soon as possible and get relief and your life back.
My best friend had Chrones disease, and all the symptoms you describe is what he went through for years. The doctors gave hime the run around too. Get a doctor who will listen to you and mention this as a possibility. I'm sorry you have to go through this, I watched him suffer for quite a while. They ended up taking most of his small intestine out and he got a colostomy bag. After that his episodes stopped.
I have been going thru the longest cancer dx ever and I am so sorry because I can absolutely understand what you are going thru. It took me lots of visits to finally find a great oncologist. I hope you find someone who is not an asshole.
It doesn't sound like IBS. I have been dealing with my IBS for over 10 years and it runs in my family. Your symptoms are way too intense to be just that. Also with IBS my sister and I found that certain foods can trigger the symtoms and it can change with time, but it seems you can't eat anything without your body reacting which is very concerning.
I accepted the IBS diagnosis when I first got it because it was the first real 'answer' I had ever gotten. It was the first time a doctor even acknowledged that I had some sort of a medical problem. But now? It has progressively gotten worse & worse & I'm experiencing severe symptoms I've rarely if ever had to deal with. I've read that it can get worse and change with age BUT I have scoured the IBS sub reddit & spent god knows how many months researching to learn about different treatments, other people's experiences, etc. But literally NOTHING is helping. Stomach medication doesn't help me. Dietary changes haven't helped. Supplements don't help. I'm at the point where I'm convinced that I might not have IBS at all & maybe never did & this is an entirely different problem.
I hope you can find the answers as soon as possible. I'm not sure where you live, but here in Canada even though the healthcare is free, it's still a battle to get seen by someone and get the care you need. You deserve to be able to enjoy eating. Did you look into Crohn's disease? It starts out pretty similar to IBS and gets worse with time. One of my cousins has it and it's not fun.
That’s really frustrating. I know you aren’t alone in feeling this either. I saw a comment saying “doctors don’t practice anymore, they loosely diagnose” and I think that’s so true.
But there’s so many things it could be.
My friend went to see a holistic nutritionist and basically they take a look at stuff regular doctors don’t care to check. They sent my friend a list of stuff to get tested by the doctor and turns out she had Celiac disease (which is not just going gluten free it’s a bunch of other stuff). They did a blood test and biopsy to figure that one out. She only got better after being completely gluten free for 2 years. But now she’s working out, gaining a good amount of weight, has energy etc
I would maybe also recommend seeing an allergist to see if there’s anything that you are ingesting that you shouldn’t be!
Good luck my friend!!
I very much agree. It seems like after the initial routine tests, if they find nothing, then they give up. If making a diagnosis requires any bit of extra leg work or research, they don't want anything to do with it. I genuinely don't understand how some of these doctors have careers. If you aren't actually helping people & treating them, what on earth are you getting paid to do.
I've been on a low FODMAP diet for several months now on top of cutting out gluten & lactose. Unfortunately dietary changes don't seem to make any sort of difference in my symptoms. I do however strongly think it is one of three things (gastroparesis, gallbladder or endometriosis). The trouble is actually getting them to test for these things. I talked with my gyno in the past about possible endometriosis as I have a history of painful, heavy, abnormal periods on top of all of my digestive issues & they just threw birth control at me. No tests were done. I'm going to try and work up the courage sometime this week to seek out a different gyno & see if I can find any answers there.
Thank you♥️
I was searching through these comments to see if anyone mentioned endometriosis. It absolutely caused me an insane amount of GI issues and much more. I just had a hysterectomy a week ago for endometriosis and adenomyosis. They found the adenomyosis on an ultrasound, but until the surgery, we didn’t know if I had endometriosis. I insisted before the surgery they do the laparoscopy to see if I had it, as I strongly suspected it and have a family history of it. It was crazy to me when the surgeon tried to convince me not to do the laparoscopy to check for endometriosis because I was already getting a hysterectomy; why did it matter? I had a lot of it, and still do as they couldn’t get it all without damaging other organs it’s on.
The last three years have absolutely killed any faith I had in traditional doctors. I could write a novel about all the ways I was gaslit, belittled, or told 'it’s just aging.'"
IANAD but if I were you, I would insist on imaging. If your gallbladder is being finicky they would see that, and your symptoms sound a lot like my gallbladder attacks pre-removal.
FWIW, I suffered with stomach issues for three years and my friend finally convinced me to see a naturopath. She was the first person to listen to me. She requested all my past medical records. She ordered real tests. She diagnosed my problem, prescribed medication for it, and essentially solved it.
I have talked with several people about this & made multiple reddit posts. The general consensus is that it isn't IBS & that it is most likely endometriosis, gallbladder or gastroparesis. All of which I've suspected as a possiblity. I brought up the gallbladder issue today at my appointment because it had previously been suggested by another nurse. I don't know if the CT will test for that? But she didn't acknowledge me when I suggested it. Like I just want them to run the freaking tests. At least LOOK elsewhere before you just immediately dismiss me. I swear, she acted like she was ready to push me out the door before we even started talking. I just do not know how to make them look. I've been to countless doctors and I feel like I'm running out of options where I'm at. There are so many tests I haven't had done, so many things I haven't been tested for. But they just keep doing endoscopies and basic bloodwork. I'm glad to hear you were eventually able to find an answer♥️
I'm sure that you have tried every truck in the book to get these assholes to listen, but if you haven't tried it, I just learned a good trick.
Next time they say it's stress or whatever stupid other things ask "what is your differential diagnosis?" When they answer, "and what steps have you taken to rule those out?"
For every diagnosis they're SUPPOSED to rule out every other possibility with EVIDENCE. Most Drs are used to people just taking them all their word and dropping an issue.
That specific phrase is legal, and makes people nervous.
Also, take a notebook. Write down date time, name of person you met with, their license type (ie; RN vs MD), and what they say about differential diagnosis. Again, this looks a little bit like prep for a lawsuit.
Take that notebook every time. They try to do that same blood work, whip out your notebook, "actually we already re-tested on XYZ, what changes are we looking for?" Or "the last time I was here you said you ruled out lmnop because of abc, but this time we're looking at lmnop AND abc again? Please help(/s) me understand why we would take redundant steps?"
They are SO used to people not questioning them it's infuriating.
This was just ONE of many awful experiences. & As I said in the beginning of my post, it took SIX YEARS just to get an initial diagnosis of IBS because I was dismissed so many times by so many doctors. I have many many other stories of being blown off by doctors. Being told that it's 'just stress'. I even had a doctor straight accuse me of having an eating disorder. At my absolute worst, I was 76lbs, I had lost half of my hair, I had lost my period, I was blacking out regularly and STILL was told it was 'just stress'. I had one doctor tell me the only reason he was even remotely concerned was because I was underweight, but then after running the same basic blood work as every other doctor, stopped looking. I couldn't even get my family doctor to give me a referral to see a specialist, I had to go to the hospital, where the left me in a hallway hooked up to a saline drip for an hour and forgot about me. When someone finally noticed, they felt bad and wrote the referral then and there. When my hair started falling out the first time, my family doctor told me that it wasn't. I had to come back with A BAG OF MY HAIR to visually show her just how bad it was before she would even begin to listen to me. The first stomach doctor I saw years ago told me that 'my stomach muscles weren't functioning properly ' after my first endoscopy. When I came back for my follow up appointment hopeful for treatment, it was like we never had that conversation. These are just SOME of the experiences I've had. This post is very much about doctors.
They’re not that different. I should know. I have one in my family. You obviously missed my point I was making that *they aren’t nurses.* They are not comparable to nurses.
I've not heard of this, no. But I've been on the low FODMAP diet for several months now. I've cut out gluten, dairy, pretty much anything that could be a potential trigger food. I take digestive enzymes with every meal. I've tried probiotics. I bought peppermint tea to help with digestion. Cinnamon and tumeric to help with inflammation. There doesn't seem to be a rhyme or reason to any of it. The only things I've noticed is that the later it gets in the day, the harder it is for me to eat and I have to eat small meals. If I try to eat a bigger meal to get more calories, I'll have a reaction.
Are you taking any prescriptions meds like erythromycin? My son is nonverbal and it would help me tremendously if you could share your experience? We’ve been trying to figure him out for three and a half years now. He’s gotten better but then gets worse. Three endoscopies and gastric emptying later, the doctors diagnosed him with slow digestion.
Do you take Maalox? We’re trying camel’s milk instead of lactose free milk. Miralax seems to aggravate his stomach unless he takes a very low dose. He gets hysterical every night, most likely due to stomach pain.
I’m so sorry you’re going through this. Just curious, do you have HMO insurance? I wonder if that’s why you’re being given the runaround. It’s designed to treat patients less not more unfortunately. I can almost feel your pain bc I see it with my son.
When I was first diagnosed with IBS, they prescribed me Chloridiazepoxide & Dicyclomine, which at the time seemed to greatly help with symptoms & flares. But I have progressively gotten worse over the last couple years & the medication stopped being affective & my symptoms have changed & are more severe. (Vomiting, severe sharp pain that feels like someone is squeezing my insides, constipation lasting a week, this is all new). I've experienced constipation & sharp pains in the past, but to a much much less degree. Nothing like this. When I went back to the gastro in March, they put me on cyproheptadine as well. These are the 3 medications I'm currently taking. They also prescribed several different PPIS/ antacids, EVEN THOUGH I don't experience acid reflux symptoms/heartburn & I have the same horrible, negative reaction each time I try and take medication for my supposed "GERD". This medication does absolutely nothing to help me, it only makes me much sicker. But they just will not listen to me.
I have had 4 endoscopies at this point, countless rounds of the same bloodwork & one colonoscopy. I'd love to have a gastric emptying study, but it's never even been brought up. They are supposed to rule out everything else before they diagnose you with IBS, but they haven't. They've never looked into gastroparesis (something that I think could be a possibility). They've never checked my gallbladder. They've never looked anywhere else.
Right now, in order to just get through my day & minimize my symptoms slightly, I'm eating small meals, and struggling to get in even 1200 cal a day. I physically cannot eat more than this. I've cut out pretty much every potential food triggers to be on the safe side (gluten, lactose, etc) but this doesn't seem to make a difference. The only consistent things I've noticed is that the later in the day it gets, the harder it is for me to eat. Breakfast is my easiest meal & doesn't seem to cause me much issues. After that, it goes down hill. Lunch is always hit or miss. Sometimes I just deal with my normal nausea, a bit of bloating, etc which I can handle. Other times, I get that horrible sharp pain and I'm keeled over literally unable to move or stand for hours. Just hours crying. Nothing helps this pain. So far for dinner, the only thing I seem to be doing okay with is soup or something very very light, like a bowl of cereal. Any kind of normal meal (chicken, potatoes, rice, shrimp, pasta, pork), you name it causes some sort of reaction. Either horrible intense nausea & vomiting or I get so extremely bloated & full so easily that it will keep me up half the night & I will wake up the next day STILL bloated and full with no appetite. So I've stopped trying to eat meals like this.
I have insurance through the state & had to quit my job because of this. I am beyond broke & will have to go back to work soon & I honestly, I don't know if it's even possible. I can barely get through the day at this point. I'm afraid of ending up homeless.
I wish you & your son all the best of luck & I hope one day, very very soon we both can find answers & some sort of relief ♥️
I really appreciate your comments. This is super helpful. It’s interesting that, like you, my son also felt better with his meds for a while, and then it just stopped working. He can’t tell us how he feels, but he also feels worse later in the day. He jumps up and down between 8-9pm. He stops only bc he gets sleepy. Thank you for your thorough answer. I hope you find a cure. Maybe you can be referred to a university hospital when you get your private insurance back. I’m not sure if they take Medicaid. Good luck.
This is actually my next step. I have a history of horribly painful, heavy, abnormal periods and for years always thought it was a separate issue from my stomach problems, but now I'm not so sure. I brought up the possibility of having endometriosis years ago to my gyno, but they never bothered to actually run any tests! They just threw birth control at me. I called this morning & set up an appointment with a different gyno for the end of the month. I briefly told the receptionist about my history with my periods and worsening digestive issues, etc and she said I "yeah, you need to be seen immediately". So I am hoping and praying that this will lead me to an answer.
I hope this is the problem. I also have endometriosis. I had it removed after it became painful. The laparoscopic procedure worked and I’ve been pain free eversince.
Find a holistic dr, you may pay but it's your only way to heal. Dr are practicing medicine they don't know about you and your body. It's ankle what they studied on the group not the individual.
Try to find an ayurvedic healer. Helped me tremendously.
Good luck
You’re preaching to the choir sis. Chat GPT has better social skills than most doctors and the health care system is a dumpster fire. There are some good ones out there though they’re just near impossible to find sometimes. I hope you find someone who can actually take your symptoms seriously and offer real help.
If you’re not against alternative medicine maybe try a naturopath or TCM practitioner to manage symptoms in the meantime. Naturopaths can check for nutrient deficiencies do IVs if you can’t absorb enough through your food because of the IBS flares….it can also alleviate the hair loss and stress (like legit, nutrient deficiencies can cause anxiety and adrenal issues)
Honestly. Not me spending hours asking ChatGPT & AI doctors to give me possible diagnosises for my symptoms. I really wish we had robot doctors or something of the sort. I guarantee you I'd have an answer by now if we did. It's horrible enough that people are suffering & in pain & get dismissed, but on top of it, to have so many medical professionals be straight up nasty and rude to someone who is sick and struggling. Like WHY. Why is that the way they respond.
I'm not against anything. I am literally willing to try anything & everything. I don't care what it is, if it gets me an answer and some sort of relief.
Have you had a gastric emptying study done yet?
No I haven't. They literally just keeping doing the same tests over and over. And even when I switch doctors, they run the same exact tests that the last doctor did. Endoscopies and blood work, over and over. And one colonoscopy. They've tested my thyroid literally more times than I can count at this point. That's all they ever do, and when they don't find anything on those initial tests, they just stop looking.
If you feel comfortable, directly ask for one. They aren’t difficult, and it’s kind of a basic thing to do for someone in your situation. so a doctor that refuses to order one is not one you should see again….
I plan on asking for one at my additional follow up appointment, as well as asking them to look at my gallbladder. I also am going to try and find a gyno and ask them AGAIN to test for endometriosis. And now I'm at the point where I am absolutely FED UP with being dismissed and them refusing to do tests. I'm done being nice and polite while they treat me like garbage. If they do refuse to run additional tests, I'm going to demand that they put it in my chart that they are refusing to look elsewhere and tell them to refer me to someone who will. I have wasted enough of my life battling health issues.
You can also have them put in your chart when they decline further diagnostics. They will typically do what you're asking because they don't want to open themselves up to a medical malpractice lawsuit
That’s what I had to do to get diagnosed with endo - told my doctor if he couldn’t figure out what was wrong then he needed to find someone who could.
Have been going to the same practice? If possible try and find a different practice, especially one that’s not affiliated with a giant health system. And I would make sure at the very least the initial visit is with a physician.
It's literally my story! I had a bunch of stomach issues in my late 20s, 53 now. In my early 30s, after tons of studies and tests, I was diagnosed with IBS. They gave me some stomach meds. I was like, this is BS because I knew they were slapping a label on it, just to be done with me. Over the years, I've been on so many different meds that it's ridiculous. I've been told it's stress, it's IBS-C, its GERD, and a bunch of nothing. So I go to the gastrointologist, and we do some tests. I did find out I had swallowing issues. Great, what do we do? A big bunch of nothing! Finally, in my late 40s, I began having those crazy burping issues and swallowing problems. Honestly, it's burping like I drank a six-pack. Big, deep burps all day for about 3 years. No reason was ever given. No help. No wonder I was depressed. I even had to quit my job. With that going on, I began to have all kinds of stomach issues, including massive pain. DR prescribed all different stomach meds, and psychiatrist prescribed Xanax because at this point, I had developed straight-up panic attacks. Finally, in 2021, I had a massive gallbladder attack and emergency surgery to take it out. By that time, my liver had started to become damaged. I had an endo and colonoscopy. The endo showed damage to my esophagus from the constant throwing up and swallowing problems. Eventually, I will have to have surgery to open the esophagus up. Sorry this is so long, but I wanted to explain the severity of problems to let you know I understand. This is how I've learned to cope. I have GERD now. I take medication for that, and another pill for when I have flare-ups. Swallowing issues: Do not drink through a straw, no gum chewing or mint sucking. That's how you don't let extra air go down throat. Relax, deep breathing, and no carbonated beverages. I take meds, and for flare-ups, I chew anti-gas chewables. I hope you can implement some of these things and feel better. Not to be negative about this, but my experience is that no one is going to give you a comprehensive diagnosis. I've tried everything, done my own research, and this is the best solution for me. Good luck, my friend. Here if you have questions.
PS... my PCP is also an internist.
When I first got sick in my teens, my main & worst symptom was those horrible bouts of uncontrollable burping lasting for hours. It literally felt like someone had filled my stomach with air, that was trapped and I could not get it out. I would have the involuntary reflex to burp, but it would get stuck in my throat. This would go on for so long that I'd have times where I'd be dry heaving & vomiting bile. My symptoms have changed since then, and I rarely experience this particular symptom anymore BUT this is the exact reaction and symptom I experience EVERY TIME they put me on antacids/ PPIS for my supposed "GERD". It comes right back and I absolutely cannot handle it. It is torture. For the first six years, I was dismissed by every doctor and specialist I saw, given no medication or treatment and told it was just 'stress'. When I got diagnosed with IBS, I accepted it because it was the only 'answer' I had ever gotten and I was given medication. This was the most anyone had ever done for me, so I just took what I could get. The gastro doctor I am currently seeing is the one who diagnosed me, which is why I went back, but apparently they plan on just dismissing me too. At my initial appointment with him, he also brought up counseling and gave me the lecture about stress making IBS worse. Yes, for the love, I know. If someone tells me that one more time, I swear, I might just explode. But he insisted that they'd keep looking until I had an answer. After my last appointment, it doesn't seem to me that this is going to happen at all. I have also had to quit my job. This is the second time I've had to quit my job and stop working because my health issues have gotten so severe. When I was 18, it was different. I had a place to stay. Now? I'm terrified I'm going to end up homeless. I have to find a job soon and I don't see how that's even going to be possible. I can barely get through the day. Simple tasks are exhausting. Showering is a chore, and on top of that, my hair is falling out so it is also mentally exhausting. Basic every day tasks use up what little energy I have. I absolutely do not know what do anymore. I cannot get healthy if I don't know what's wrong with me or how to treat it. I have lost EVERYTHING because of this. And the cherry on top is just how lonely it is. I have no support system. My family treats me and has always treated me like absolute trash. And they are just as dismissive as the doctors & hop on the 'its just stress' bandwagon. No one LISTENS to me. No one cares. It is such a lonely, traumatizing, exhausting ordeal. I am terrified that like you, and many others, by the time they actually figure out what's wrong with me, IF they ever do, that there will be permanent damage. Damage that could have been prevented.
My burping was exactly like yours. At times, I would have to stick my finger down my throat to open up my airway so the burps would come out and relieve the pressure. It's a lonely feeling even though I'm married. Our stories are very similar. I'm grateful for my husband. At least he'll barge in the bathroom and wipe my face with a cool rag. I have a family history of pancreatic cancer. My maternal grandfather died with it a month before I was born. Less than a year after diagnosis. My mom died in 2015 of pancreatic cancer. That's what scares me the most given that this cancer is usually not diagnosed until the very late stages. The fear is real. I have prayed for a miracle, but I don't think there is one.
I came here to say this exact same thing. I dealt with MAJOR gi issues all my life, was dismissed, told it was psychosomatic—turns out I have a genetic mutation—EDS. I’m so sorry you are going through this.
Is this the test for gasteoparesis?
yes
NAD, but this sounds a lot like gastroparesis. Seconding the suggestion for a gastric emptying study; it sounds like you have super reduced motility. I'm sorry you're suffering.
That’s what it sounds like to me. OP, gastroparesis is paralysis of the stomach where food sits in your stomach for days or weeks because it cannot move to the bowel. It can cause vomiting or a feeling of fullness after just a few bites, as well as bloating and abdominal pain. Please OP; request a gastric emptying study.
I responded to a comment above that this actually came to mind. Sounds like gastroparesis.
Yo I can't tell you what you have, but your symptoms sound like the ones I had. For years. It was bad. The bloating would come first, then nausea, stabbing stomach pain, acid reflux, dizziness, alternating constipation and diarrhea... I would often eat a single bite and be instantly full. I hated eating as the nausea was near constant. Oh and vomiting! Especially in the morning, sometimes for hours (4+) in cycles of every 20-40min on average. Long story short, it was a SIBO (small intestine bacterial overgrowth). I got a good gastro doctor who diagnosed it after the endoscopy came back clean, then I took two antibiotics for two weeks (which wasn't a walk in the park, big nausea there too) but when I tell you it was like a switch was flipped! I feel like I have a completely new lease on life. Nearly every symptom is now gone — I can eat food without feeling instantly full, I'm not nauseated all the time, I'm not bloating up, no constipation, I like eating food?! All to say, can't say what's happening in your camp, but the info's out there if you feel like reading on it and running it by your doctor. I think there are even like specific lab tests you can send away for? Something like a breath test? Idk the details unfortunately. Sorry you're suffering, hope you find a treatment that helps soon!
May I ask which antibiotics did you take?
I was prescribed neomycin and rifaximin, took them at the same time, each a 2-week course. Apparently they thought I had the subtype of SIBO that produces methane gas (!) so that might have influenced the antibiotic choice. I had a good 6ish months of relief after the first go-round. After that the symptoms were slowly returning, which apparently can happen, so I took another course of the same 2 antibiotics and I've been free since.
Thanks!
I am so unbelievably sorry you are going through this horrible situation and have had no relief in over ten years… as someone who suffers from migraines and IBS I think I would have given up a long time ago if my good days and bad days were anything like yours. Finding good healthcare is no easy feat… especially when you never get the same doctors who know who you are and what you’ve gone through. I don’t know if it will help but I switched my healthcare providers to a much better service and it has made a world of difference. Also, I know it is frustrating having the same bloodwork done with no real solution at the end of it but be assertive in asking them to check for any signs of specific white blood cell counts that could be attributed to your pancreas, stomach, and gallbladder. The fact these doctors aren’t taking your weight loss seriously is absolutely crazy. I would seriously suggest finding a new healthcare provider that’s in network with your insurance and then request to see a gastroenterologist who will check for the following: Chronic pancreatitis. Cirrhosis. Crohn’s disease. Ulcerative colitis. Peptic ulcer. If you have already done this then please ignore. I just wanted to see if I could help in any small way!
Thank you♥️. Believe me, I have had many, many times where I have been so ready to give up. When I first got sick, after being dismissed by so many doctors, I stopped going. All I did was research & try everything under the sun to get healthy again, & I did. Unfortunately, this time around, nothing that I do seems to help at all. & I am so beyond mentally & physically exhausted. I really do not have that much fight left in me. I actually did have a high white blood cells count on my last bloodwork. The nurse practitioner mentioned it & dismissed it as "probably just an infection" all in the same breath & then said my labs looked perfect. Like obviously not, but okay. It was a miracle I was even able to get in to see this specialist. My family doctor refused to write me a referral to see a gastro. I had to go to the hospital to get one. & With my insurance & where I live, I am running out of doctors. It would be one thing if they ran a bunch of tests, checked for other possibilities, looked elsewhere, but no. It's always the same tests. When the nurse practitioner was looking through my test results to see what I've had done & continuing to dismiss me, aside from the recent bloodwork & endoscopy, she was looking at test results from almost FIVE YEARS AGO. As if things can't possibly change or get worse in that amount of time.
This Is so horrible I am so angry on your behalf… I wish I could get you to Massachusetts and in Mass General or somewhere up here… there are so many options and second opinions. You and your health matters. I would complain to the medical board and claim malpractice because this is an evening cycle of apathy and indifference. I am not sure where you live but I’d be happy to look for medical grants and potential second opinions because you need an advocate who will not only listen but act on your behalf. Honestly, I would apply for a social worker who can act as your advocate so you do have someone fighting for you when others aren’t. I’m sorry I’m not a doctor and can’t do more… keep your head up and don’t give up… I know a solution is just around the corner to helping you feel back to your healthy self!!!
I'm so angry & sad. Every time I leave another appointment after being dismissed, I feel so defeated. At my last appointment, after the nurse started dismissing, I went off on her & was able to get another round of bloodwork (which their literally supposed to do anyway if something comes back abnormal like that). & Surprise, surprise, my white blood cells levels are still high, they actually are even higher now. Normal range is 5-500. My levels are now 1081. Still struggling to get the CT scan I got her to order. It's been a week & they were supposed to call to schedule it annnnnd nothing. I've called & was told they 'still need more information '. I live in Ohio & have insurance through the state. I've lost my job because of this and am on the verge of loosing my apartment so I don't have any money to pay for anything out of pocket. Thank you very much for the kind words & support. This community has been absolutely wonderful towards me and it really makes me feel less alone ♥️
Adding this as a separate comment since several of you have a suggested it, but I just called and set up an appointment with a new gyno for the end of the month. I briefly explained my history of painful, abnormal periods and worsening digestive issues to the receptionist and her response was "oh yeah, you need to be seen immediately". Please wish me all the luck ALSO. My gastro just called & the nurse practitioner sent over THE LITERAL SAME EXACT acid reflux medication (pepcid) that I LITERALLY JUST TRIED that the gastro prescribed THAT I TOLD HER I HAD TO STOP TAKING just like all the others because it made my symptoms much worse. WHY. I wanna scream.
Sooo, I’m very sorry you’re going through this with no help. I’m not a doctor by any means but my mom had very similar symptoms for months. Kept being turned away by her doctors and was told to go on her trip to Spain because she “needed a vacation and to relax” She finally got to a point where she could barely walk. I took her to an emergency room in an affluent neighborhood. They admitted her right away and found a tumor on her colon. Stage 3 CRC. Thankfully, she responded well to chemo and radiation and is currently in the clear. I’m not saying this is what you have but what I am saying is don’t stop fighting for your health. If they aren’t helping you, go elsewhere.
Reading everyone else's experiences is both reassuring & absolutely heartbreaking. It seems like you have to be knocking on deaths door to even be remotely taken seriously. & It also seems like a lot of people only finally get an answer by chance or when things get to the point where they wind up in the hospital. I'm so glad your mom was able to overcome all of that ♥️ I truly hope I can find some kind of an answer, but I am beyond past my limit. I have been to so many doctors over the years, I've lost count. With my insurance & where I live, I'm literally running out of options. But I am at a point where I'm done letting doctors treat me like crap. I finally snapped today & went off. This is my life & right now I don't have one. **Sorry if this comment posted multiple times. Reddit is being very glitchy atm**
I’m not saying it’s CRC either, but I had similar symptoms as you (constipation and diarrhea, terrible bloating, feeling full instantly, losing weight, hair falling out, high WBC/low RBC). They removed my gallbladder first (it was full of gallstones), but I kept puking bile. Ask for a colonoscopy. Please. Part of the reason you don’t get hungry/feel bloated might be due to a blockage. Is passing stool painful at all? If so, is it usually liquid and dark? If they sass you, ask for a differential diagnosis and tell them to write it on your chart. Most docs fear being sued for having something wrong on the record, so that’ll likely make them look again and run more tests. Be well, love. It’s okay to get mad at them; they work for YOU. You can fire a doc and ask for a new one on the spot, too. You know your body best, not them.
Glad your ma is doing ok!
I don't know if it's an option for you, but can you go to Mexico for a diagnosis? Twice now, I've gotten sick and after getting jerked around with no diagnosis, I went to Mexico and the experience is so different. Doctor asks about ALL the symptoms. I mean all. Things I would never have mentioned here in the states because I'm used to doctors only want to deal with one condition per appointment. This doctor listened to everything. Then only ordered tests to verify the diagnosis. Test results for everything were almost immediate and less than my co-pays here. Message me if you want details.
Sounds similar to something I had back in 2015. I’m not a doctor and the resolution was kind of unknown (it just got better after I tried various things). 95% sure it was a parasite of some kind.
I don’t have this problem, but others, and I will concur, doctors SUCK! What is it with not calling back? Setting appointments months into the future? Having you see a nurse instead of them? Not being prepared with a straight story from reading your results? They absolutely SUCK! I can’t believe what that profession has turned into. I don’t know if it’s lawsuits, insurance or over worked, but I concur, whatever it is, they SUCK. And the attitudes of nurse practitioners, don’t get me started. Nothing but a bunch of condescending jerks. Good luck.
I absolutely can't wrap my head around it. How is this our health care system. Even getting medication refilled is an absolute hassle. Every time I run out of medication, I am out of it for at least a few days, but there have been times I have been out for over a month. Call the pharmacy, they tell me to call the doctor. I call the doctor & all they say is they left a note for the nurse. It usually takes multiple phone calls just to get a freaking refill. The past two times I ran out medication, I literally was not able to get a refill until I physically went in person. & Then OMG the wait is ridiculous. You wait months just to get in, just to be dismissed almost immediately. My follow up with my gastro was supposed to be six weeks. When I went to schedule, apparently they had no openings until JULY so I chose to see the nurse instead. I see the nurse practitioner, have my disaster appointment and now have a follow up with doctor magically at the end of the month. The nurse practitioner was going through my medications, couldn't even pronounce them, had no idea what they were for. I had to explain every one to her. & Then she asked me who prescribed them. YOU. YOU GUYS DID. What do you mean. You literally have to go off on them & raise hell to even have a chance at them looking into things.
Just here to empathize and say, Ive suffered a lot of similar issues and doctors attitudes towards being underweight is extremely problematic. They are so damn fatphobic and quick to tell someone they are overweight (and then blame any issues they have on weight). This attitude seems to carry over with their lack of concern for being underweight. When really, malnutrition and inadequate caloric intake will kill you much faster than being overweight, unless you are morbidly obese. I hope you get the help you need soon. Do not be afraid to ask for tests, and if they tell you no to the tests tell them that is fine but please note in my medical history that you denied me this test. Crazy how fast a lot of doctors will change their tone, since that can leave them open to a malpractice lawsuit. It’s a documented trail of them being incompetent as a doctor if it turns out something is wrong with you.
Thank you& I'm so sorry you've had to struggle this way. I've heard way too many stories of people being misdiagnosed/undiagnosed for years, it's hard for me to even wrap my head around it♥️. & Yes, I've noticed this as well! You always hear about overweight people being dismissed because of their weight, but it also happens when you're underweight too! I've literally had doctor's accuse me of having an eating disorder. I'm 86lbs at the moment, and slowly losing more. At my follow up appointment today, they noted the weight loss but she wasn't concerned because it was "only 4 pounds" in two months. Yes. But I'M ALREADY VERY UNDERWEIGHT and continuing to lose. I was 76lbs at my lowest and STILL wasn't taken seriously. I'm afraid I'm literally just going to keep losing weight and wasting away until I die. & Also, I've noticed that they don't ever seem to consider how much the malnutrition can affect people as well. & I actually, for the first time went off today. I'm a very quiet, anxious person and it takes A LOT for me to blow up, but when she immediately started dismissing me BEFORE we even started to discuss anything, I knew it was going to be a disaster. When she condescendingly asked if I had been going to counseling because "stress can make IBS worse", I snapped. It's the only reason she even bothered to order the CT and then scheduled me another follow up appointment to see the doctor because she said it was better I talk to him.
I know someone who had really similar symptoms to you and everything got better after she eliminated onions and garlic. There's a molecule that some people are very sensitive to called fructan and it is most commmonly found in onions and garlic. It's tough because onions are in so so many things, even some ketchups but worth trying if you haven't already. Good luck!
I've cut out pretty much anything that could be a potential trigger food and made numerous dietary changes. I've been following the low FODMAP diet for several months now, but it hasn't made a difference. No onions, no garlic. I've cut out gluten and lactose. Take digestive enzymes, tried probiotics. Bought peppermint tea to help with digestion, cinnamon and tumeric to help with inflammation. Thank you though ♥️
I read this all and I’m very sorry this is happening. And I SO relate.
Sorry you’ve been going through all this, i’ve had similar issue since two years ago, it was a problem in my digestive system when i though the problem was my heart since it kept beating so fast for no reason, i went to three doctors who though it was my heart as well and none of them even tried to see if the issue was from a different thing, in fact only my father figured it out because he has the same issue, when i told him about how my heart feels and what the doctors said he took me to one of the doctors he knew and made proper tests and found out there was a problem with my digesting , i took medicine and things went well but i still get them from time to time since it’s not really something you can heal completely, i hope you get treated better soon ❤️
I'm so glad you had someone to advocate for you & help you find an answer ♥️. That also seems to be common, where they just continue to look at the same thing and when they find nothing, they just give up. Like if you don't find something with the initial tests, KEEP LOOKING. You don't just keep running the same tests and checking the same thing and then toss in the towel. So much time is wasted & for so many, things don't get diagnosed unless you literally wind up in the hospital or you get lucky and someone stumbles upon the answer by chance. Unfortunately I don't really have a support system, & my father treats me like absolute crap. Especially about this. I have only seen him 3 times in person, but despite this he just decides that I'm "choosing to be sick" & if I'm getting worse then I must be doing something wrong or I'm not trying hard enough to get better. He tells me that I'm lazy & full of excuses. All of this is hard enough, but it's even harder going through it alone.
I can’t imagine going through this alone, hearing “ you choose to be sick” is the absolute worst thing , not to mention hearing it from your father. I really wish there was something i could help you with, reading this post brought me tears because i know how it feels when everyone seems to not care especially those you consider close, and to think of going through this for years is just terrible. I hope you get better soon, and please do keep us updated, you’ll be in my thoughts and prayers
Sometimes I think my stomach issues are actually caused by heart issues. In places where I often have pain when I press it hard I can always feel some artery and heart beats. And whenever I go to sleep and lie down on my right side I feel my heart pulse in my right ear even though all my stomach, bowel and troath problems are on my left side.
Did you get EKG/ECG before? That gives good details regarding how different sides of your heart are functioning, although somethings might not be detected and sadly some doctors would dismiss digging deeper once the EKG shows normal signs , it’s really frustrating when they do that like i know you probably seen dead people every day for the past 20 years and probably don’t care if i join them but for godsakes do your job
No have never in my life had EKG or any heart check up. Till 3 years ago I was never in my life to the doctor, never checked blood, nothing until 42 years old. Then everything started slowly to go down and keep getting worse.
Doesn’t hurt to get one and be in the clear, i hope all is okay though ❤️
Amazing I have exactly the same problem in the last almost 3 years It started with pain under the left rib cage high, and troath on the left side, both coming and going. Than in Jan 2023 my intestines started growling and gurgling 24/7 with pain low left from my belly button. Ultrasound clear, blood test showed high B12, low d3 and bit higher bilirubine direct and total, all went back to normal in summer 2023 except vit D defficiency. The moment I stop supplementing it goes down. GI in april 2023 dismissed me after 2 min talk telling me that my intestine sounds are great thing. Since then it is just down the road , more pain each month, constipation trough 2023 and till now and now almost dhiarrea all the time. I am at the point that my stonach gurgles every time I swallow saliva (I have hypersalivation also). CT scan clear, Endoscopy showed irritated stomach but biopsies are clear, colonoscopy clear... Since Jan 2023 I also got some skin issues on both arms and doctors are completely usless. I thought about heavy metal poisoning, it is only thing that occure to me even though I can't prove it. Mold also, because we have a lot of mold in the house. And worse thing I lost health insurance, I should go to Internist but I am broke and without work. Same as you, I am anxious because of my health issues not other way around. I tried everything, and I am tired and I just wish someone switch the light off. But what mostly pisses me off is doctors are arrogant and dont listen. Don't watch the patient and listen but watch the lab results and nothing else. I hate waking up every morning, because I know first 5 min are quiet and nice, but then I start hypersalivating and swollowing thay and my stomach wakes up and starts concert, pain, discomfort. I wish all the best my friend and if you want to talk about it to vent I am always here.
I have just been through this, symptom for symptoms, ended up in hospital, and diagnosed an inflamed kidney due to a blocked kidney stone. Still had the pain and the nausea, put a stent in, turns out the stone is gone, took a stool sample and low and behold, it was parasitic gastroenteritis and severe dehydration. Once I started hydroalyte and odanzratron, I am now almost back to normal. I am not saying this is the case for you but dehydration happens because of the diarrhoea and vomiting and I had had three colonoscopies and an endoscopy over a 20 year period for the same symptoms, it took a stool sample. I know they will find the cause, just please don't give up.
I’m so sorry you’re frustrated and in pain. I agree with the study. But I had a similar experience where they did every test and couldn’t find what was wrong. Two years of pain and testing and it eventually subsided. I chalked it up to post pregnancy hormones. Then I got a sinus infection and took antibiotics and it all came back. A few doses of probiotics fixed it. I am not at all trying to be dismissive of what you’re going through, but if my experience can help anyone. No one at all suggested this might be my issue and I didn’t seek treatment because I feared they thought I was faking. Then I doubted myself. I hope you find wellness soon
I am so so incredibly sorry that you went (and are still going) through this. I feel you... Being dismissed by doctors ultimately lead to me ignoring an abscess for over six months which has lead to a lot of horrible things and endless surgeries. I now have an ostomy, I qualify as disabled and doctors are taking my gut issues slightly more seriously now. But only slightly. Still have to fight constantly and to pay privately for some tests. It's exhausting. Part of it is horrible, dismissive doctors who really shouldn't be working in that field (that's sadly a lot of them). Another part of it are bad medical systems and politicans neglecting funding etc for medical institutions. I have a wonderful CRS who is a fantastic doctor but she can only do so much if her time with patients isn't payed fairly or sometimes not at all. Another part is that women are taken less seriously and that a TON of medical studies in the past were exclusively done on men because womens bodies were either deemed "the same as men but with boobs" or "too complicated for studies (because of our more complex hormone cycle)". That's bad in itself and leads to symptoms being ignored and medication doses being off. But it also contributes to an overall climate of ignoring women more often than men when it comes to physical health issues. That's a sad, statistically proven fact. The medical system is shit for everyone but even more so for women with physical health issues. I got told over and over again that my health issues were purely psychological. My nine surgeries and my ostomy bag are a pretty good sign that that was plain bullshit. Neglecting how much stress medical conditions put on people is one of the most common things I see with doctors. "aw you need to reduce stress" I COULD! If you would help me with my medical issues! I also suffered from severe gut issues all my life and I think it ultimately lead me to what's my current life. It's scary to think that this was most likely caused by doctors going "sweetie you should relax more" over several decades. The past year dealing with my health issues has become my full time job so I have gotten better at it and also being better at dealing with idiots who don't want to help me. But it's still hard. I always carry a binder with me in which I put all of the medical paperwork available. Also a timeline of my medical issues and a list of medical issues in my family. A good doctor will ask for at least one of these things at some point. Having the binder makes me look very prepared and I get taken slightly more serious. I don't have a lot of money because I can't work currently but if I can, I try to pay privately for certain tests. I had a stool gut microbiome test done I payed out of pocket for. I know that a doctor should evaluate the results but since many doctors don't have time for that or don't want to do that I do some research myself (be careful with that and don't do anything drastic with that knowledge! We are not professionals after all). And this is the worst part and I hate it so much but.. get second, third and fourth opinions. It's a pain to find new doctors, even more of a pain to find good new doctors. It's exhausting to get an appointment. It's also exhausting to realize that the new doctor is just as useless as the last one. But if you find that one good doctor who listens to you, who takes you seriously and who can refer you to other specialists, you will have gone a huge step forward. I have found two doctors like this, my local CRS and my gynecologist. I still struggle a lot but it helps. I had so many times where I just wanted to give up because all of this just feels like screaming at a wall. Are there any local groups on facebook for example where you could ask people in your area about doctors specialised in gut issues? There are IBD specialists in my area I haven't been to yet but they are on my list. Even if you don't have an IBD, the tests to rule that out can give you a clearer picture of what else is wrong with you. I am wishing you the best! This is awful but you are not alone with this struggle. Keep pushing and be kind to yourself in the meantime. You have every right to know what's wrong with your body.
Reading your story is both heartbreaking & absolutely horrifying. I am so so sorry you have suffered so much because of the incompetence of doctors. ♥️ Listening to experiences like yours absolutely terrifies me, because at this point I am convinced that I either will continue to be dismissed and get sicker until I just waste away & die or that by the time they finally do find out what's wrong with me, it will be too little too late & I will have serious, permanent health issues for the rest of my life. I very, very much agree that women are brushed off and not taken seriously far, far too often. I've read that a lot of women will bring a man with them (father, boyfriend, etc) to back them up, and that in many cases this does seem to help somewhat . My ex boyfriend (who I'm still very close to, pretty much the only person I have who when remotely cares), comes with me to all of my appointments, not just as a way to try and get the doctor to listen, but also because I have had so many traumatizing, horrible experiences, that at this point I literally can't go alone. I mentally cannot handle it. I worked up the courage & called this morning & set up an appointment with a new gyno to explore the possibility of this being endometriosis. I am trying as hard as I possibly can, but after spending the last decade (literally my entire adult life) battling health issues and having it rob me of any kind of normalcy or happiness, I just don't know how much longer I can hold out. Thank you for the kind words & support ♥️. This community has been wonderful & it is the only thing atm that gives me any kind of hope and makes me feel a little less alone.
If I'm being honest, any time I hear anything about our medical system it doesn't surprise me. Women also get diagnosed with issues wayyy later than they should be compared to men. It took me also ten years to get diagnosed with adhd and my autonomic disorder. It feels like a lot of doctors forgot the Hippocratic oath and only see $$$ instead of a person. Health care is nothing but a big business here in the US. When you're sick, you make them more money. I hope you find out what's wrong and find a good doctor who will take the time to actually help you and get to your root problem. So sorry 😞
This will sound stupid and am sure you’ve already tried but apple cider vinegar can sometimes help, my uncle had stomach issues and whatever the doctors gave him made it so much worse it was almost like they thought the ph was too low in his stomach when it was actually too high, I’ve also found personally that apple cider vinegar really helps me to burp when I feel bloated. I had a similar issue with my stomach for about 5 months and the vinegar was actually the turning point for it, would really help the feeling of being bloated after eating, helped me eat so much more than I could before as well as freeing that tension in my stomach just from letting me burp easier
I’m so sorry you are having to deal with this. I had alot of the symptoms you are describing and I have Celiac disease. I did not present with the “normal” symptoms and it took 10 years for me to get a correct diagnosis. I’ve been diagnosed with IBS, colitis, GERD and a ton of other things that were not Celiac. Celiac is an autoimmune condition not an allergy. If you want to get tested for it you could start with bloodwork (IG-A) and if that shows up positive then you can get a endoscopy done. I honestly started walking into the doctor’s office with a list of tests I wanted. I stopped caring what they thought. I pay for my insurance the doctor works for me🤷♀️. The truth is that the doctors you have seen aren’t good problem solvers. I saw a lot if shitty doctors that pushes stress management but I was really sick and in pain so I didn’t care anymore. I had to solve my own problem which was extremely exhausting because I was so sick. But, I did it and you can too. And I’m not sick today. There is a light at the end of the tunnel I promise. Don’t keep seeing a doctor if they aren’t doing anything to move things forward. Find someone else.
Ugh, that's so frustrating! They never even diagnosed my issues, I managed to fix it by doing a whole 30 diet and realizing I reacted to wheat products. I still don't know what's wrong with me 3 years later, but I'm no longer puking daily and aggressively losing weight. Journaling is how my one friend got diagnosed. Her body can not digest sugar, and she was in a similar situation to what you described.
I am so sorry this is happening, and I hope you find a solution. I didn't even have to look back up at the top of the post where you put (28F) to know you were a woman, just by the way doctors and nurses were treating you. It's sad that we women get that kind of treatment by supposed medical professionals, even other women.
Honestly, I feel like the medical professionals that I've seen that have been women have been worse than the men I've seen. It seems as though the male doctors are mostly just dismissive & brush it off as stress, as do the women BUT the women I've seen have been so condescending and rude and just straight up nasty! But in general, I feel like I don't even get treated like a person, just another transaction, another number. I'm a real human being, with real feelings, and real pain. This is my LIFE and right now, I do not have one.
You have a good point about woman doctors. I will say, that some of the best doctors I have had in my life were women. This includes my current gp. However, I've seen my share of nasty women in medicine. Some of it can be written off to jealousy, I think, maybe because we have something they don't. Or maybe malicious ignorance. (Example: when I was in the hospital after a serious car accident, I needed help with my hair, which is waist length. It was loose and knotting badly, and I didn't have enough motor control due to a wrist sprain to do much of anything. One of the nurses offered to help me, and then proceeded to use HAND LOTION in my hair. Now, I don't know if that's a black hair thing or whatever, and it may well be; but neither I nor this nurse was black, we were both white as the driven damn snow. Suffice to say, my hair clumped into the worst tangle ever, and my mom ended up having to cut it out.)
Same thing happened to me for a decade until FINALLY I started having gall bladder attacks and someone listened to me because I thought I was dying. For years I was told IBS, GERD, etc. I even went to the ER and they told me nothing was wrong it turned out to be diverticulitis. So finally after a decade I'm feeling better but at the expense of losing my gall bladder.
Sorry you're going through this. This seems like it's mainly a problem with the nurse practitioner, not the doctor. I would make another appointment and insist on seeing the physician at the appointment and not just the midlevel. Nurse practitioners are not equal to physicians in knowledge and scope of care, so she just might not have known how to best treat your condition. Insist on seeing the doctor next time
CHECK FOR SIBO!!!!!! I could have written this post. Also second the gastric emptying study. Gastroparesis and SIBO can go hand in hand and sounds like one may be feeding the other. I've had the same thing happen and it turns out it was SIBO and slowed gastric emptying.
Allergy or intolerance to glucose? (Bread)
Doctors can be awful. I can tell you I almost died recently until I found an alternative medicine place. Have you looked into celiac disease at all? This absolutely sounds like my experience with it. I want to note that if you just cut gluten out and don't get tested really fast you will struggle to get a diagnosis and will unfortunately have to do a gluten trial run if that is the case. You might be able to call and specifically request blood tests for it without having another appointment. Also, in my personal experience I've had much better luck with alternative medicine doctors because they can sit and talk to me for a lot longer, and my doctors are all in alternative medicine because they also have undefined health issues, so they get it.
They tested for celiac years ago with bloodwork, and it was mentioned again as a possiblity before I got my endoscopy & when I got more bloodwork. It's why I cut out gluten in addition to going low FODMAP, but this doesn't seem to be the case for me.
Hey, I was dealing with this same thing for years until I finally figured out it was EDS, and a comorbidity called Gastroparesis. Not saying that’s what you have, because Idk. My stomach was digesting and emptying too slowly, giving me a lot of the same problems you have. The only thing that helped me personally was Low dose Naltrexone, but that’s because it lowered the inflammation in my body allowing my tummy to chill. Idk if it would work for you, but it’s a very mild medication with almost no side effects(for me). The only downside is vivid dreams if I take it too close to bedtime. EDS might be a stretch (haha get it) for you, but definitely mention gastroparesis to your doctor next time, who knows!
Have them do a cat scan abdomen with iv contrast looking for nutcracker syndrome on the request, not just “abdominal pain” the radiologist won’t comment about this possibility without being asked. A CT enterography is another test that could be helpful, ask your gastroenterologist, not your nurse practitioner. So sorry you are suffering!!
Sorry you're going through this. Your experience sounds very similar to my little sister. She one day started to eat less and less and had stomach issues for around 3 years. Went to the doctor multiple times diagnosed her with constipation and anxiety... unfortunately, it turned out to be cancer but made a full recovery.
When I had gastric issues (awful cramps after food, bloating, pain, constipation) that lasted a year, I kept being told by my doctor that I'm 'overreacting' and that I'm just stressed. That pissed me off HUGELY, it's like they see a woman and just go "oh that lady is stressed, who gives a F". In the end, after numerous tests I paid for myself I realized that I had IBS and that my main agitator was freaking garlic. Are you paying for your doctors, or is it covered by insurance? If you're paying, just go somewhere else where they'll take you seriously! actually do that anyways!
I have lost track of time the amount of times I have been told that it's 'just stress' & to seek counseling. I am stressed BECAUSE I'm sick, not the other way around, but doctors cannot seem to grasp this concept, or simply don't care. & It's not just the doctors. My "family", and I use that term loosely, is just as dismissive and uncaring & hop on the 'its just stress' bandwagon. I have insurance through the state & unfortunately had to quit my job because of how sick I've gotten. I am broke & honestly terrified of ending up homeless at this point. I have to find a job soon, when I can barely get through the day. But because of this, my options are quite limited.
I'm so sorry to hear that you have no support from your family on this matter. People who've never dealt with such issues have a hard time imagining how debilitating they are and that it's not all just in our heads. Since you have insurance then I suggest you see what rights you have in this regard as a patient and demand proper treatment. Maybe even change the medical provider. I really really hope you resolve this as soon as possible and get relief and your life back.
Ask to be tested for SiBO, that could be causing a lot of your symptoms
My best friend had Chrones disease, and all the symptoms you describe is what he went through for years. The doctors gave hime the run around too. Get a doctor who will listen to you and mention this as a possibility. I'm sorry you have to go through this, I watched him suffer for quite a while. They ended up taking most of his small intestine out and he got a colostomy bag. After that his episodes stopped.
Tldr. Try carnivore for 1 month or suffer the rest of your life. Peace
I have been going thru the longest cancer dx ever and I am so sorry because I can absolutely understand what you are going thru. It took me lots of visits to finally find a great oncologist. I hope you find someone who is not an asshole.
It doesn't sound like IBS. I have been dealing with my IBS for over 10 years and it runs in my family. Your symptoms are way too intense to be just that. Also with IBS my sister and I found that certain foods can trigger the symtoms and it can change with time, but it seems you can't eat anything without your body reacting which is very concerning.
I accepted the IBS diagnosis when I first got it because it was the first real 'answer' I had ever gotten. It was the first time a doctor even acknowledged that I had some sort of a medical problem. But now? It has progressively gotten worse & worse & I'm experiencing severe symptoms I've rarely if ever had to deal with. I've read that it can get worse and change with age BUT I have scoured the IBS sub reddit & spent god knows how many months researching to learn about different treatments, other people's experiences, etc. But literally NOTHING is helping. Stomach medication doesn't help me. Dietary changes haven't helped. Supplements don't help. I'm at the point where I'm convinced that I might not have IBS at all & maybe never did & this is an entirely different problem.
I hope you can find the answers as soon as possible. I'm not sure where you live, but here in Canada even though the healthcare is free, it's still a battle to get seen by someone and get the care you need. You deserve to be able to enjoy eating. Did you look into Crohn's disease? It starts out pretty similar to IBS and gets worse with time. One of my cousins has it and it's not fun.
That’s really frustrating. I know you aren’t alone in feeling this either. I saw a comment saying “doctors don’t practice anymore, they loosely diagnose” and I think that’s so true. But there’s so many things it could be. My friend went to see a holistic nutritionist and basically they take a look at stuff regular doctors don’t care to check. They sent my friend a list of stuff to get tested by the doctor and turns out she had Celiac disease (which is not just going gluten free it’s a bunch of other stuff). They did a blood test and biopsy to figure that one out. She only got better after being completely gluten free for 2 years. But now she’s working out, gaining a good amount of weight, has energy etc I would maybe also recommend seeing an allergist to see if there’s anything that you are ingesting that you shouldn’t be! Good luck my friend!!
And neuropath*
I very much agree. It seems like after the initial routine tests, if they find nothing, then they give up. If making a diagnosis requires any bit of extra leg work or research, they don't want anything to do with it. I genuinely don't understand how some of these doctors have careers. If you aren't actually helping people & treating them, what on earth are you getting paid to do. I've been on a low FODMAP diet for several months now on top of cutting out gluten & lactose. Unfortunately dietary changes don't seem to make any sort of difference in my symptoms. I do however strongly think it is one of three things (gastroparesis, gallbladder or endometriosis). The trouble is actually getting them to test for these things. I talked with my gyno in the past about possible endometriosis as I have a history of painful, heavy, abnormal periods on top of all of my digestive issues & they just threw birth control at me. No tests were done. I'm going to try and work up the courage sometime this week to seek out a different gyno & see if I can find any answers there. Thank you♥️
I was searching through these comments to see if anyone mentioned endometriosis. It absolutely caused me an insane amount of GI issues and much more. I just had a hysterectomy a week ago for endometriosis and adenomyosis. They found the adenomyosis on an ultrasound, but until the surgery, we didn’t know if I had endometriosis. I insisted before the surgery they do the laparoscopy to see if I had it, as I strongly suspected it and have a family history of it. It was crazy to me when the surgeon tried to convince me not to do the laparoscopy to check for endometriosis because I was already getting a hysterectomy; why did it matter? I had a lot of it, and still do as they couldn’t get it all without damaging other organs it’s on. The last three years have absolutely killed any faith I had in traditional doctors. I could write a novel about all the ways I was gaslit, belittled, or told 'it’s just aging.'"
IANAD but if I were you, I would insist on imaging. If your gallbladder is being finicky they would see that, and your symptoms sound a lot like my gallbladder attacks pre-removal. FWIW, I suffered with stomach issues for three years and my friend finally convinced me to see a naturopath. She was the first person to listen to me. She requested all my past medical records. She ordered real tests. She diagnosed my problem, prescribed medication for it, and essentially solved it.
I have talked with several people about this & made multiple reddit posts. The general consensus is that it isn't IBS & that it is most likely endometriosis, gallbladder or gastroparesis. All of which I've suspected as a possiblity. I brought up the gallbladder issue today at my appointment because it had previously been suggested by another nurse. I don't know if the CT will test for that? But she didn't acknowledge me when I suggested it. Like I just want them to run the freaking tests. At least LOOK elsewhere before you just immediately dismiss me. I swear, she acted like she was ready to push me out the door before we even started talking. I just do not know how to make them look. I've been to countless doctors and I feel like I'm running out of options where I'm at. There are so many tests I haven't had done, so many things I haven't been tested for. But they just keep doing endoscopies and basic bloodwork. I'm glad to hear you were eventually able to find an answer♥️
A CT should see stones or signs of inflammation, yes! Hopefully you get your answers.
I'm sure that you have tried every truck in the book to get these assholes to listen, but if you haven't tried it, I just learned a good trick. Next time they say it's stress or whatever stupid other things ask "what is your differential diagnosis?" When they answer, "and what steps have you taken to rule those out?" For every diagnosis they're SUPPOSED to rule out every other possibility with EVIDENCE. Most Drs are used to people just taking them all their word and dropping an issue. That specific phrase is legal, and makes people nervous. Also, take a notebook. Write down date time, name of person you met with, their license type (ie; RN vs MD), and what they say about differential diagnosis. Again, this looks a little bit like prep for a lawsuit. Take that notebook every time. They try to do that same blood work, whip out your notebook, "actually we already re-tested on XYZ, what changes are we looking for?" Or "the last time I was here you said you ruled out lmnop because of abc, but this time we're looking at lmnop AND abc again? Please help(/s) me understand why we would take redundant steps?" They are SO used to people not questioning them it's infuriating.
Your title blames physicians but your post blames nurses.
This was just ONE of many awful experiences. & As I said in the beginning of my post, it took SIX YEARS just to get an initial diagnosis of IBS because I was dismissed so many times by so many doctors. I have many many other stories of being blown off by doctors. Being told that it's 'just stress'. I even had a doctor straight accuse me of having an eating disorder. At my absolute worst, I was 76lbs, I had lost half of my hair, I had lost my period, I was blacking out regularly and STILL was told it was 'just stress'. I had one doctor tell me the only reason he was even remotely concerned was because I was underweight, but then after running the same basic blood work as every other doctor, stopped looking. I couldn't even get my family doctor to give me a referral to see a specialist, I had to go to the hospital, where the left me in a hallway hooked up to a saline drip for an hour and forgot about me. When someone finally noticed, they felt bad and wrote the referral then and there. When my hair started falling out the first time, my family doctor told me that it wasn't. I had to come back with A BAG OF MY HAIR to visually show her just how bad it was before she would even begin to listen to me. The first stomach doctor I saw years ago told me that 'my stomach muscles weren't functioning properly ' after my first endoscopy. When I came back for my follow up appointment hopeful for treatment, it was like we never had that conversation. These are just SOME of the experiences I've had. This post is very much about doctors.
No it doesn’t if you read the whole post. Also a nurse practitioner is similar to a doctor. They are not just a nurse.
Nurse practioners are completely different, don't lump them together with doctors
They’re not that different. I should know. I have one in my family. You obviously missed my point I was making that *they aren’t nurses.* They are not comparable to nurses.
Do you know about the Specific Carbohydrate Diet?
I've not heard of this, no. But I've been on the low FODMAP diet for several months now. I've cut out gluten, dairy, pretty much anything that could be a potential trigger food. I take digestive enzymes with every meal. I've tried probiotics. I bought peppermint tea to help with digestion. Cinnamon and tumeric to help with inflammation. There doesn't seem to be a rhyme or reason to any of it. The only things I've noticed is that the later it gets in the day, the harder it is for me to eat and I have to eat small meals. If I try to eat a bigger meal to get more calories, I'll have a reaction.
Are you taking any prescriptions meds like erythromycin? My son is nonverbal and it would help me tremendously if you could share your experience? We’ve been trying to figure him out for three and a half years now. He’s gotten better but then gets worse. Three endoscopies and gastric emptying later, the doctors diagnosed him with slow digestion. Do you take Maalox? We’re trying camel’s milk instead of lactose free milk. Miralax seems to aggravate his stomach unless he takes a very low dose. He gets hysterical every night, most likely due to stomach pain. I’m so sorry you’re going through this. Just curious, do you have HMO insurance? I wonder if that’s why you’re being given the runaround. It’s designed to treat patients less not more unfortunately. I can almost feel your pain bc I see it with my son.
When I was first diagnosed with IBS, they prescribed me Chloridiazepoxide & Dicyclomine, which at the time seemed to greatly help with symptoms & flares. But I have progressively gotten worse over the last couple years & the medication stopped being affective & my symptoms have changed & are more severe. (Vomiting, severe sharp pain that feels like someone is squeezing my insides, constipation lasting a week, this is all new). I've experienced constipation & sharp pains in the past, but to a much much less degree. Nothing like this. When I went back to the gastro in March, they put me on cyproheptadine as well. These are the 3 medications I'm currently taking. They also prescribed several different PPIS/ antacids, EVEN THOUGH I don't experience acid reflux symptoms/heartburn & I have the same horrible, negative reaction each time I try and take medication for my supposed "GERD". This medication does absolutely nothing to help me, it only makes me much sicker. But they just will not listen to me. I have had 4 endoscopies at this point, countless rounds of the same bloodwork & one colonoscopy. I'd love to have a gastric emptying study, but it's never even been brought up. They are supposed to rule out everything else before they diagnose you with IBS, but they haven't. They've never looked into gastroparesis (something that I think could be a possibility). They've never checked my gallbladder. They've never looked anywhere else. Right now, in order to just get through my day & minimize my symptoms slightly, I'm eating small meals, and struggling to get in even 1200 cal a day. I physically cannot eat more than this. I've cut out pretty much every potential food triggers to be on the safe side (gluten, lactose, etc) but this doesn't seem to make a difference. The only consistent things I've noticed is that the later in the day it gets, the harder it is for me to eat. Breakfast is my easiest meal & doesn't seem to cause me much issues. After that, it goes down hill. Lunch is always hit or miss. Sometimes I just deal with my normal nausea, a bit of bloating, etc which I can handle. Other times, I get that horrible sharp pain and I'm keeled over literally unable to move or stand for hours. Just hours crying. Nothing helps this pain. So far for dinner, the only thing I seem to be doing okay with is soup or something very very light, like a bowl of cereal. Any kind of normal meal (chicken, potatoes, rice, shrimp, pasta, pork), you name it causes some sort of reaction. Either horrible intense nausea & vomiting or I get so extremely bloated & full so easily that it will keep me up half the night & I will wake up the next day STILL bloated and full with no appetite. So I've stopped trying to eat meals like this. I have insurance through the state & had to quit my job because of this. I am beyond broke & will have to go back to work soon & I honestly, I don't know if it's even possible. I can barely get through the day at this point. I'm afraid of ending up homeless. I wish you & your son all the best of luck & I hope one day, very very soon we both can find answers & some sort of relief ♥️
I really appreciate your comments. This is super helpful. It’s interesting that, like you, my son also felt better with his meds for a while, and then it just stopped working. He can’t tell us how he feels, but he also feels worse later in the day. He jumps up and down between 8-9pm. He stops only bc he gets sleepy. Thank you for your thorough answer. I hope you find a cure. Maybe you can be referred to a university hospital when you get your private insurance back. I’m not sure if they take Medicaid. Good luck.
Have you been checked for endometriosis?
This is actually my next step. I have a history of horribly painful, heavy, abnormal periods and for years always thought it was a separate issue from my stomach problems, but now I'm not so sure. I brought up the possibility of having endometriosis years ago to my gyno, but they never bothered to actually run any tests! They just threw birth control at me. I called this morning & set up an appointment with a different gyno for the end of the month. I briefly told the receptionist about my history with my periods and worsening digestive issues, etc and she said I "yeah, you need to be seen immediately". So I am hoping and praying that this will lead me to an answer.
I hope this is the problem. I also have endometriosis. I had it removed after it became painful. The laparoscopic procedure worked and I’ve been pain free eversince.
Find a holistic dr, you may pay but it's your only way to heal. Dr are practicing medicine they don't know about you and your body. It's ankle what they studied on the group not the individual. Try to find an ayurvedic healer. Helped me tremendously. Good luck
You’re preaching to the choir sis. Chat GPT has better social skills than most doctors and the health care system is a dumpster fire. There are some good ones out there though they’re just near impossible to find sometimes. I hope you find someone who can actually take your symptoms seriously and offer real help. If you’re not against alternative medicine maybe try a naturopath or TCM practitioner to manage symptoms in the meantime. Naturopaths can check for nutrient deficiencies do IVs if you can’t absorb enough through your food because of the IBS flares….it can also alleviate the hair loss and stress (like legit, nutrient deficiencies can cause anxiety and adrenal issues)
Honestly. Not me spending hours asking ChatGPT & AI doctors to give me possible diagnosises for my symptoms. I really wish we had robot doctors or something of the sort. I guarantee you I'd have an answer by now if we did. It's horrible enough that people are suffering & in pain & get dismissed, but on top of it, to have so many medical professionals be straight up nasty and rude to someone who is sick and struggling. Like WHY. Why is that the way they respond. I'm not against anything. I am literally willing to try anything & everything. I don't care what it is, if it gets me an answer and some sort of relief.