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So I Got Misdiagnosed . . .
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- Опубликовано: 9 дек 2022
- hello my darlings
in todays video I give you a health update in regards to seeing a Dr regarding my R-CPD.
Relative links :
R-CPD gurgle video - • Rcpd gurgle
R-CPD Document - bit.ly/3FH3XVp
Redit No Burp - bit.ly/3FQp0VP
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Created By : Anna Lesnick
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Hello!! There seems to be some confusion probably on my part due to the lack of explaining on this video - but I have mentioned it In others.
I have NOT been diagnosed with r-cpd by a medical professional as of yet. To get an official diagnosis I’d have to go private to one of the very few Drs who specialise in this condition. This is my plan in the new year.
The reason why I didn’t mention the words “r-cpd” to the gp when I had my phone appointment is because the condition isn’t that well known and I knew I didn’t have a lot of time to speak to the dr on the phone anyway. So I just listed off all the symptoms I have daily (I have all of the symptoms of r-cpd) just to see what the gp would say and I mentioned to him that since taking omeprazole it’s got a lot worse and by mentioning this I hoped he’d swap this medication for something else to which he didn’t and went straight for the “you have an infection”
I mentioned in a couple videos I just knew I would be misdiagnosed should I see a gp cause it happens ALOT with this condition but many people were insisting I should just do it anyway to see what happens and I did. I’m glad I did because it just confirms I must see a specialist in this condition now and hopefully go ahead with the cure which is Botox injected into the muscle that allows you to burp because mine doesn’t relax to allow me to do so resulting in all my symptoms 🧡
I'm curious if the gp was wanting your poo to test for H. pylori. It is an infection that you can have in your stomach and may not get sick like a "regular" infection. Not saying that would be the cure all, because there is obviously something happening, but say you do have H. pylori maybe that is why you've been feeling worse as of late? My heart has been breaking for you Lauren, I hope you get answers and relief sooner rather than later.
@@mistyeydgrl i was thinking the same thing.
Lauren, It is possible that on top of r-cpd you could have an h pylori infection, which you can actually have for years. H-pylori is associated with acid reflux. Most doctors will try to rule out more common ailments before first but keep trying, after all no one knows your body better than you. Good luck, hope you get the help you need soon.
See if they can switch you to Famotidine for the acid reflux, i used to have bad stomach aches and stuff with omeprazole after taking for a while.. obvi it wont cure your r-cpd but it should make your life easier. Def need to advocate for yourself more severely ~
On today's "the Try Channel" video, Ciara says she also has R-CPD and cant burp properly. Yours sounds a lot worse though. Just thought it was interesting. Love your content! Feel better.
I was prescribed omeprazole for a different different reason about 2 months ago and it made me non-celiac gluten intolerant. I eliminated the omeprazole and use mylanta instead as an experiment and I got better. I mentioned it to my GP (in Australia) and she was like... "yeah makes sense" because it reduces stomach acid and stops you from being able to digest gluten.
Maybe try eliminating gluten for a few days and see if that helps?
I know the pain darlin, the surgeon apologized to my husband after my surgery because she tried to talk me out of getting my gallbladder removed but discovered it was completely scarred and chock-full of stones.
Among other "invisible illnesses" that I've battled with for most of my life, they didn't believe me and made me wait until it was so bad that I was constantly throwing up.
Don't give up Lauren, please advocate for yourself and know that you have so many people across the globe standing behind you hoping to give you strength to fight the twisted power system that makes a mess of the entire "healthcare industry".
Much love and gentle hugs 🤗
🧡🧡🧡
I believe healthcare in the UK isn't as bad as it is here in the States, but if a doctor refuses any testing, make sure to request that they document in their chart and as to why they aren't doing that test. 1. It protects you and gives you a backup to prove if the doctor was wrong later on. 2. It gives the doctor a little more pressure to reconsider the test and actually think about if it may be necessary or not.
It's how they finally did the correct testing to find out I have a severe thyroid issue. 🙃
I agree with you healthcare in the US is pretty bad as an American myself
Yes, yes, yes! Very good advice
Yes! I did the same thing!
Wish I had known that when my MRI was cancelled. 😅
This can be good advice, although I find in the UK it can get drs a bit annoyed and make you seem difficult. And I guess to be kinda fair the Dr wasn't refusing any testing, he just got the wrong end of the stick a bit. There are conditions you can have that are underlying and then an infection can worsen it, and if Lauren is a bit socially anxious it sounds like in the appt she didn't directly disagree with this point. But yeah this can be good advice.
I am sorry you had a bad experience with the doctor. Stool samples can be tested for calprotectin , which is connected to ulcerative colitis or Crohn’s disease. As a doctor you have to exclude the more common diagnoses first, so that may be what they were trying to do. Not excusing it, just adding some context. Hope you will be able to get better soon ❤.
Also considering that your condition seems to have gotten worse lately, there might be a case of infection worsening it. Lot of possible scenarios that could have been communicated better, I am sorry you were not feeling heard.
One thing doctors take into account is how much the condition affects your life, so make sure to emphasize that. Not eating until the afternoon in order to avoid making the symptoms worse and being stressed out about it is obviously negatively affecting your quality of life. It sucks that doctors won't take things seriously unless they understand that and it's sometimes difficult to communicate especially with anxiety. I hope things get better for you soon!
I know this frustration too well! I’ve been going to the doctors with extreme and chronic pain to do with my periods since I was 14, I’m now 29. It’s taken 15 years (and multiple hospital admissions) for them to take action and I finally got diagnosed with endometriosis. Keep fighting and persisting until they listen 💖
Hmm. as someone who's studied in the medical field (the science, not medical practitioner) I have a feeling that if the right testing is done a stoolsample might actually show a lot more than you think. Although maybe not in this case, I'm not certain.
I don't know all the symptoms, but it almost sounds like you could have gastroparesis. That comes with weaker muscles, bloating, reflux problems, and trouble eating. I wouldn't be surprised if the burp thing would be linked to it as well. I'm very careful here because it also comes with symptoms like nausea, vomiting, and feeling full quickly when you're eating.
Considering this is an issue in your family it might be a genetic problem. I'm not saying you should go to 23AndMe but maybe there's something to be found in your family genes.
I could very well be something completely different that still links the R-CPD and other symptoms together though. There's quite a few issues that are overlooked because doctors don't know they're a thing or have never seen them before.
Also: infection isn't a misdiagnosis. The doctor suspects that's what it is. It isn't a diagnosis until there's a specific thing (like a specific pathogen). The test is there to confirm his idea.
And I really dislike IBS as a diagnosis. IBS is a collection of symptoms that can vary a bit that usually showcase something else is going on. As someone who got the diagnosis thrice with the idea that there wasn't something medical ongoing simply because it wasn't a clear allergy, celiac, IBD, or a parasite was frustrating. I knew there was more going on than just stress that made me sensitive. Guess what I discovered several years later: I have food intolerances that the doctor flatout denied I could have, because you're born with it....
always follow your gut when it's about your gut. It's so important for your mental and physical health since it's directly connected with both the brain and the immune system.
I hope she reads this comment. I have also studied something medicine-adjacent and worked in hospitals and thought of gastroparesis, and now with the mention of infection maybe SIBO. R-CPD could be the cause but it still might be a different diagnosis entirely. I hope a more empathetic doctor can help though.
I agree !!!!
Totally agree. I thought she shouldn't dismiss the stool sample testing because it could be something that is worsening her condition as of late. It could be the medication but it could also be the gastroparisis. Or a few other things.
My dad ended up being diagnosed in his 60s with diverticulitis. He'd had it for a long time and never knew so he was eating things they advised against up until he was correctly diagnosed with it.
It may be worth doing the poo test as a first step. Once they see nothing is wrong, they can try other things. That said, you'd be surprised what symptoms a thrush infection in the throat can cause. Many are like what you are describing. It requires some antifungal oral medication to treat. I wonder if that is what he's thinking. I had this infection in my throat and stomach earlier this year. I couldn't eat, hold anything down, was constantly nauseous and had bad bloating.
There is a saying "When you hear hoofsteps, don't go searching for zebras." The doctor is looking for more common ailments first instead of immediately going for something rare. Have patience- I know it's hard, but help and relief will come.
You may have an infection on top of your condition, especially since you've been worse more recently.
Added: I truly do understand your struggle. I have a very rare autoimmune disease that took 7 years to diagnose and another that took an additional 20 (yes, twenty) years more to diagnose. Both diagnoses were because I finally found the right doctor. Help will come. I feel your struggle. Chin up, don't discourage.
Also (and please don't take this badly), were you diagnosed by a doctor for your throat condition or are you self-diagnosed?
Okay, so I'm saying this as someone who spent about a year now arguing with multiple GPs and specialists on the NHS about several different conditions, including autoimmune ones which left me disabled for the majority of 2022 -- I don't think it's fair to judge the medical knowledge of a doctor who is trying to do a reasonable set of testing for a gastrointestinal problem he's seen countless times before and which also matches the trapped air symptoms (since you mentioned infection, I assume we're talking about h.pylori, since it makes the most sense here). That's not to say that you are not in the right for advocating for yourself -- you absolutely are! And you should be! This is causing you immense distress and life disturbances! But it is possible you're not approaching it from the correct angle.
Given that R-CPD is only at the start of its journey to being recognized as a medical condition, I'm not at all surprised a doctor might not even know it exists. That's not to say you shouldn't mention it at all -- by all means! -- but it would be beneficial for you as a patient to eliminate the possibility of other conditions as well, even if just to say: "it's not that!" That's *how* you get closer to an actual diagnosis, whatever it might ultimately be. Symptoms tend to overlap a lot in a lot of conditions and the presentations are varied, because each human body is unique. You mention that you were expecting to get diagnosed with IBS, but that's a diagnosis given through excluding other possibilities. Right now, nobody can really diagnose you if you refuse testing.
Since you also take omeprazole, it is worth noting that long-term use of it can cause low stomach acid, which is probably why it is aggravating your condition. There are alternatives to this particular class of medications (PPIs), so that might be worth exploring. Personally, PPIs never agreed with me (causing worst digestive symptoms and dizziness), but I can take famotidine and am absolutely fine.
I know this is all really emotionally charged, and I wish you all the best, but I truly believe that it will be more beneficial for you right now to play this strategically and eliminate other possibilities. Hell, it might even end up being that something *else* is causing your symptoms and that something else is much easier to access treatment for and ultimately treat :)
Lauren I'm so sorry that you're struggling. In my experience, it is best to do whatever the Dr asks. If it doesn't work, go back and tell them that. If the treatments they give you don't work and the tests are negative, they will try something else. This is the best way for them to see that it's not an infection
I (age 19) have been dealing with severe chronic migraine for 20 months now and the amount of people who have said “but it’s just a headache, take some painkillers” when I’m in debilitating amounts of pain is horrible. Luckily my therapist helped me to advocate for myself and I’ve been getting treatment and got a proper diagnosis. However, Botox is incredibly painful and expensive, even though my family’s insurance covers it, and I don’t even know if this will work. Apparently I have “treatment-resistant migraines” and it’s very disheartening.
Please keep going and advocating for yourself, and know that you aren’t a burden or disappointment to others if you’re unable to go out or make plans bc of the uncertainty of your condition. Lots of love from WI, USA 💜
Oh my love I’m so so sorry!! I can’t even imagine having to go through all of that! 🧡
hey! i had chronic ‘untreatable’ ‘no cause’ migraines for about seven years, and it actually turned out i was overstimulated almost 24/7 and that i had autism. im not saying you do, but it may be helpful to look into it! i wish you luck in getting help for your migraines, they friggin suck.
@@hao00478 Thanks for the suggestion, I do have anxiety and depression, but so far no autism, and I’d say I’m definitely not on the spectrum. I have close family members who are on the spectrum and I love them to pieces, but I’ve never dealt with struggles like they do -and I’m pretty firmly neurotypical lol. I’m glad you got your migraines/diagnosis figured out! And thank you for the well wishes 💜💜
I have had chronic migraine since I was 7 or 8 and I'm 33 now. Spent most of my life with the head pain. I can so relate to your experience, so many people don't understand what it's like to live with. I've discovered some of my triggers that can be helped (gluten for example, if I eat it one time I will have migraines for 8 days in a row so bad that I'm vomiting) and others that I can't, like barometric pressure changes and hormone fluctuations. After so many years of them, it's caused me some other neurological effects. Like, I suffer from aphasia, which gets worse with an oncoming attack. Also I have absolutely terrible long term memory, I can relate to the memory problems of someone in their 60s or 70s. I wouldn't know what happened to me in a portion of my life if others weren't around to tell me about my experiences. And those are just a couple of the daily side effects I deal with. Can also relate to the other commenter about ASD! I am also autistic and find that I will surely get a migraine if I'm overstimulated, it was mind blowing to figure it out. I've had some people tell me to "just deal with it". I've had people who don't believe me when I say I have a migraine bc "how could you, you are behaving normally". I have spent so much of my life with the head pain that, if I curled up in a dark room every time my head hurt, I would literally have no life. I still have to do that when the pain reaches a certain threshold, but otherwise I live my normal life, working, exercising, doing chores, running errands, all with migraines the whole time.
@@VampireGecko19 I have migraines on and off (I’m 20). I can’t tell you how many times people have been like ‘just take an Advil!’ Or something and it NEVER fully helps, might help a tiny bit but once the migraine fully comes on, it’s just a matter of burying your face into a pillow until you hopefully fall asleep. By the sounds of it though yours seem to be a lot worse and more frequent than mine, but I can recommend possibly trying cbd oil (orally) this is absolutely just from my own experience and I’m not a doctor obviously lol but I’ve found it does actually help at times.Of course it’s hard to fully get rid of a migraine (trust me I know) but i just want to put it out there, maybe it’s worth a shot if you’re comfortable with something like that. Anyways wish you the best and a big F U to migraines ❤️❤️
At my tattoo appointment. I should have brought headphones dangit. Taking a break now. Definitely will watch tonight. ❤️❤️❤️
Ahhh hope you’re having a great tattoo appointment 🥳🧡
I am coming at this from a healthcare providers perspective from the US so I don't know how relevant it is, but I hope I can provide a little perspective. If you already know what you think you have, then you should 100% mention the diagnosis to the doctor, especially if it is your first time seeing that doctor. Symptoms like this have a lot of cross-over with other (more common) conditions that need to ruled out first (as you mentioned with IBS). I know it is frustrating, but giving a doctor a list of symptoms and expecting them to diagnose you with a very rare condition is just not realistic. Idk if this is relevant advice for the NHS, but this is the reason it is so important to have a primary care provider who you see annually that knows you. You can bring up a problem with them and then follow-up with them after that. Rare conditions take time to diagnose and can sometimes involve needing a specialist. You can't expect a GP to know everything. Doctors are human and sometimes they are wrong.
This is still absolutely relevant in the UK, it would always be worth mentioning what you think you have and realistically with something that's not even treated on the NHS they might have to Google it to look into what exactly it is but it means that they might be able to look at the differential diagnosis and as they can't do the bottom treatment they might discuss symptom management (so in Lauren's case maybe switching out the Omeprazole)
The only thing that I'd say is different in the UK is that if we're young and don't have specific conditions we don't have an "annual checkup" as its deemed a waste of money- we might have an asthma review, a mental health review (on top of normal appts) of we have certain diagnoses but not just a general checkup!
Think I was 10 when my parents took me to the local GP due to a severe mental health condition. We were told I was just a bad child, and were sent away. Salt in the wound to see the doctor that said it to me was featured in some local newsletter for being so good at his job, when he was a-okay with hearing about a child that wanted to self checkout AGAIN before hitting her teens.
Wow !! That’s not good at all! So sorry my love 🧡
I know it sucks, but sometimes you just have to go through the process in order to rule out the other more common stuff first before they can start considering more rare diagnoses. I think you should do the fecal test, it's not going to hurt anything and then things can proceed from there.
The rushed phone call got a big "no" from me, so I'm really glad you sent them a long message afterwards! If you end up trying Botox next year (even just once) and it fixes your problems, maybe there's a chance that when you report it to the Dr's they can make it part of the NHS so that they'll cover the future cost
It would be such a long process to get jt allowed to be done on the NHS. It needs to be measured like cost vs benefit and success rates and if there's cheaper alternatives and stuff like that normally before they approve it. Because it's not like they can just approve it for one person, they're doing it nationwide
As someone who has very complicated health issues that took 8 years to get a diagnosis for, I can confidently say you have to advocate for yourself. I think sending the message was the right thing to do. Do whatever you need to do to get the treatment you need. If I had given up, I would just assume I was having 'little charlie horse cramps' in my intestines as the one doctor told me. Luckily, I was persistent and eventually was diagnosed with atypical complex Crohn's, Hashimoto's disease, autoimmune vasculitis, and autoimmune synovitis. I now receive the treatment I need and haven't had to be hospitalized in almost 2 years. Lauren, you're doing great!
hey i don’t mean this to come off as condescending because obviously you and other patients know yourselves and your bodies very well and have to live with certain symptoms, but i think you were being unfair on the doctor. If RCPD is something you’ve diagnosed yourself with and you’re certain you have it i feel you should’ve bought it up in the consultation because as you said it’s an incredibly rare illness with not much literature on it and the conversation could’ve been more productive.
I think it’s also unfair to make fun of or belittle the doctor for suggesting you might have an infection as firstly it’s not a “misdiagnosis” but their opinion of what could be wrong which would then lead to a diagnosis, secondly persistent infections can lay dormant in the body for many many years and be exacerbated by medication etc. so it isn’t a completely stupid idea as you’ve made it out to be. i would trust the doctors who’ve worked years and years studying this over subjective reddit forums.
there’s also a saying in medicine: when you hear hoofbeats think horses not zebras and maybe by you looking up your symptoms online you’ve concluded that it’s zebras, without running the tests and the blood work etc.
The doctor and other medical professionals are just trying to do their jobs and i feel it’s because of patronizing emails like yours they get burnt out. Obviously i feel for you and am sorry you have to go through all this i just wanted to let you know how i felt and maybe just don’t completely dismiss what the doctors have said. likewise they shouldn’t dismiss what you’ve said and should absolutely look into rcpd. i think it’s wonderful you’re continuing to stand up for yourself but please don’t do it at the cost of insulting the intelligence of doctors and other healthcare workers. Either way i’m sending you lots of love and hope this can get sorted out and that you get better soon ❤
The thing is though that think of horses not zebras is that some doctors take that as zebras don't exist. They will give a horse like diagnosis and not pursue it any further. They won't listen to patients who bring up rarer things. They won't research rarer things. They won't test for rarer things. And have put in charts that these patients are just drug seeking or difficult which will make them even less likely to be taken seriously down the road.
I can completely sympathize with doctors rushing to diagnose you and hurry the appointment. I had a horrible experience with my parents' family doctor in my early twenties. He ended up giving me steroids I didn't need that caused me to have a panic attack and he thought I was having an allergic reaction. After that horrible experience, my pain just got worse and exploded after I was in a car accident and went through a lot of emotional distress. Didn't go to another doctor for it until almost 2 years ago. Diagnosed with Fibromyalgia, and now on meds for it and my pain is so much more manageable it's insane.
Many, many hugs! 💕 I know it can get hard dealing with something that affects you every single day, and it's even harder when some doctors just don't want to truly listen.
I have multiple health problems and have had to learn to advocate for myself. I had an abusive psychiatrist appointment in the past and discovered other people had the same experience with him. I've also been misdiagnosed more times than I can count. The GP's just struggle a lot with me. They're kind of clueless even though I'm mostly accurately diagnosed now and they have even recommended medications before that the pharmacists have then refused to dispense because they would be dangerous with my other meds. Be a Karen, advocate for yourself, demand help until you get it. I know it's not always easy and I know I've regretted just settling in appointments and being fobbed off before with no energy to fight but you deserve help ❤️
I just came back to this video after watching yesterday as I have several diagnosed invisible illnesses. In my experience, since my conditions are usually diagnosed by ruling out other causes, it's easiest to explain that you think you may have a condition because of a list of symptoms so that they have a tangible end goal in a sense. You'll likely need to deal with a lot of bullshit including tests to rule out other causes but at least it's a mostly indisputable diagnosis for future doctors and you won't need to rehash the diagnosis phase if you move and get a new GP. It's not going to be easy or quick but I hope you get some relief sooner rather than later 🙂
I know it’s hard but you really need to advocate for yourself in all healthcare systems around the world. That said, don’t go into an appointment expecting a misdiagnosis. Please tell the doctor what you think you have. It shouldn’t be a guessing game they pass or fail. They may roll their eyes at you as soon as you talk about doing your own research, but fuck them! Insist that they really hear you.
Also be open to the idea that you have a different condition than RCPD. You won’t truly know until you are tested and possibly go to a specialist and get a medical diagnosis.
It’s great that you got your thoughts off your chest after the fact, but please try your best do that during an appointment (easier said than done). I would call the doctor again and ask for a second opinion (in person rather than tele-health!!!!!) Don’t wait for them to watch your videos or read a sub Reddit.
We’re all rooting for you.
Proud of you for standing up for yourself ❤ its so hard to get taken seriously in health care, as thankful as I am for the nhs. We’re all rooting for you lauren x
What a nightmare, I really hope you get referred to a specialist. The thing is GOs have a bit of knowledge about a whole range of things but not everything, a specialist referral would be so beneficial. You did right to speak out, hopeful you will get somewhere, it's bloody stressful but don't give up, like you say this is your life and your health. You don't have to suffer x
I have multiple “invisible” chronic illnesses. I know I don’t have the same schooling as a doctor, but I live in this body and know it better than them. Every diagnosis I thought I had, I was correct about. Push back and question doctors when they are giving you a bullshit diagnosis. I’ve lost track of how many times I’ve told a doctor that they were incorrect.
I would go back and say what you think you have and why. IMO it can help guide the doctors train of thought. I have several chronic conditions, one of which my GP had never heard of, so he googled it whilst I was there and made me a referral. Doctors are pretty useless though overall, we shouldn’t have to fight for health care and the right to be heard, but we do. Maybe even a&e could help you out? If you’re not being heard anywhere else, they have medical staff such as ENTs around to be assigned to cases like yours. I’d advise going in the day time though, around 10am, as nighttime is so much more busy over there. Keep fighting on, I’m sorry you’re going through this.
Im so sorry you had to deal with all this, Lauren 💚 I have fibromalaga (or thats what my doctors are calling it for now, i guess) and its been a multi-years long battle of doctors being so disrespectful and ignoring me. Took 2 years to convince them i wanted an xray and physical therapy.
Misdiagnosis are so incredibly hurtful, especially if you know whats wrong with you. I went into the doctors office so many times for them to either say its just muscle tightness, laziness, bad diet, infection, etc when i told them i had chronic pain.
I'm glad you're able to open up and talk about your medical journey, it definitely makes me feel more seen when more people talk about their medical struggles. Your email was also so justified, you just have to sound like a 'karen' sometimes to be heard.
Big hugs from a fellow fibromyalgia sufferer~ 💜
This sounds so similar to what I’m going through. 😨
I don’t even remember when I’ve burped last and I’ve been wondering why.
I’ve been diagnosed with IBS and Celiac disease but it doesn’t explain everything for me.
Hugs to you! I hope everything will get better for you! ❤❤
So sorry for the crap experience. When I was originally dealing with similar symptoms, I requested an appt with an ENT (Ear, Nose and Throat) doctor. They did an endoscopy (camera down throat) and a colonoscopy to rule out any issues. I then had an ultrasound and blood work and they determined that I actually had a crap gallbladder on top of the rCPD and that was causing more issues to compound.
Also, I have the same acid issues and my doctor prescribed Pantaloc for the meds… 2 pills at bedtime for two weeks, then 1 at bedtime until the issues seem to resolve. At this point, I’m only on it when I have a flare up and those are more rare with each one.
Not sure this will help but I hope it adds some info to your list for the next doctor.
I know the 800 is a lot of money but as someone who is chronically ill and does symptom management for my pain I can promise you that once you feel even a small amount of relief you will not want to go back. I spend over that on shots for headaches every 3 months and I put it on medical credit, I make payments. I'll probably never pay it off. But, when those headaches start to creep back up towards the end of the 3 months I know it's worth it.
Ugh. That is so frustrating! I’m so sorry you have to deal with this. I’ve been struggling with migraines and visual snow and I can definitely relate to your situation. My doctor switched me off of omeprazole onto famotidine because of swelling. I think omeprazole has some nasty side effects taken long term but check with your doctor. Also don’t be afraid to say “I think it’s R-CPD” during your appointment. Or “this is a crisis in my life”. Unfortunately patients sometimes need to be an advocate for themselves which sucks. Also I’m from America but can you see a gastroenterologist instead of your GP? They might know more about this condition? Good luck and hope you find a doctor who is helpful!❤
In the uk I belive our GP has to refer us to specialists unless I go private which is the route I’m thinking of taking now! 🧡
@@treacletatts I definitely recommend that. I went straight to a rheumatologist for my chronic pain and got a proper diagnosis. It's more costly right away, but honestly will save you money from unnecessary tests and extra appointments. I also stressed to the rheumatologist my financial situation and he put in even more effort to keep it cost effective for me. I'm in the US, and I thought I had to get a referral to go to a specialist, too, but I did not. Double check to look into that for the UK. It can never hurt to educate yourself more about what health options are available to you! ♥
@Moonyfruit remember that unless we go private our healthcare is free, so whilst we do have to go to our GP before we can see a specialist and may have to do some extra testing along the way, it's not directly costing us, the individual any money. I feel for US patients on that level
So the infection in the stomach , was he talking about H pylori ? It’s a bacterial infection in the stomach which causes all sorts of gastric issues do you think he’s talking about that ? It’s related to ulcers and gerd and reflux too , I hope you get answers I have the opposite issue where I can’t toot LOL because I have spinal cord damage it’s damaged my colon area so I can’t fart and there is nothing more annoying than needing to get rid of wind when you can’t do it I would think from either end it’s horrible. I’ve been on omeprazole and on lansoprezole now it I pronounce it O-map-Rez-ol . Hope that helps hope you can answers soon xx
I did a quick google to see the symptoms of H pylori and the only one I seem to have is bloating which is all the air i intake 😂😩 thank you though!! So sorry to hear about your spinal cord injury ☹️🧡
An H. pylori infection is tested via stool, too, so that prob is what the doctor was thinking
@@kristinakellett4059 agreed. And then if that was negative, then they should suggest other testing (maybe upper endoscopy).
I'm so glad you fought back with that email. Standing up for yourself medically is HUGE. All the best to you♡
I completely feel you with this. Getting misdiagnosed and/or ignored by doctors is so incredibly frustrating, and it does wreak havoc on your mental health as well. Just know you’re not alone, my love to you ❤️
I really feel your pain, Being forced to wait for years (and counting) for the right treatment because it’s either not available or it’s heavily underfunded is something I wouldn’t wish on my worst enemy. The toll on my mental health has also been extreme just like for you.
I hope that you spreading the message will cause a wider conversation about the issues your dealing with!
Growing up in and around hospitals I have learned that they always order the basic tests first to easily rule out the common issues first so they can cross those off the list first. I know you said that the issue maybe the Omeprazole, have you tried getting one of the other OTC meds for Acid Reflux to see for sure? I suffer from IBD and GERD so I know how bad some of those pains can be.
From my personal experience with getting a disgnosis for something that's often misdagnosed I've personally learnt that the best course of action is to say to the doctor what you think it is and then list all the symptoms why and explain that its often misdiagnosed. I understand not wanting to sound like a "know it all" but, if it's a good doctor, they will hear you out.
I hope you dont have to live with this for too much longer x
So much love xx 💓
I agree 100%, nothing wrong with letting your doctor know what you think it might be! Especially if it's not a very common disease
Yeah, I hate that she had a bad experience but couldn’t help but wonder what the advantage could be of not mentioning her previous diagnosis during the appointment.
Because I haven’t been officially diagnosed to do that I’d need to go private so there’s nothing on my medical records to say I have it. So I wanted to see what an actual dr would say I had and In hopes I’d get to change the medication I’m on for acid issues.
@@treacletatts but your condition is so rare that it didn't have a name until 2019? So it's possible the Dr's don't even know about it. If you just tell them you think it's RCPD they can look it up, learn about it from their sources and in the end they'll have more resources to help you with it further.
First of all, I want to tell you how incredibly brave and genuine of you it is to share this with us, even the gurgles. I have watched a lot of your videos and never even suspected you struggle so much, which I am sorry for. Hopefully, by now, you have been offered some kind of relief/operation, as you really deserve the help you need. You're such a kind and authentic person!. I myself was incorrectly treated for years, even though I knew what was wrong with me. Nobody took me seriously. In fact, the first time I reached out to a medical professional about this was in the UK, through the NHS, and the guy didn't get it at all. This was followed by YEARS of wrong treatments (I have Bipolar Disorder), but when I FINALLY found my now psychiatrist, she immediately knew what was wrong. I didn't have to say or defend myself or explain. She could plainly see it on me, and she always has been able to. Amazing. I so wish there were more doctors and therapists like this, who just LOOKED at the person and LISTENED. I know there are so many patients out there, including people who do it for attention, but honestly, every patient should be treated with the same sort of attention and respect that we deserve. Wishing you the best.
Ugh I hate that everything is funneled through GPs. They need to know about every illness in depth and it's just not possible. Feels like they think everything is either an infection or a "bad lifestyle" 😅
Hi Lauren, I've been watching your videos for a long time but I never really comment. However this video really hit home for me as I've had similar issues being taken seriously by doctors (as have many of my female friends). Please remember that you are very strong and brave for continuing to fight for your health, and remember to be extra kind to yourself! Yasmin is right, you can't help any of this and you are not letting anyone down by taking care of yourself! I also really admire how you are sharing your struggles and experiences in order to help others, even when you are suffering yourself. What a total badass you are!!! Things will get better, and for whatever it's worth, this internet stranger is wishing you fast healing and all the coziness and good snacks and happiness that you very much deserve 💜
I have been misdiagnosed for over ten years, every doctor I went to said I have allergies and no meds worked. I finally went to a specialist because I was so tired of being sick and tired. I was told I don't have algeries and I have been taking many tests and a kidney problem they are still trying to figure out. Maybe it's from all the darn allergy pills I use to take, ugh. Don't give up girl as long as your doctor is willing to investigate let them investigate or find another doctor.
Oh Lauren, I feel so bad for you. I hope you'll find a doctor that gets you the correct diagnosis. I have been having a struggle getting to the bottom of a medical issue too so I understand your situation. I have GERD and I'm on 2 medications for it, yet I continue to get heartburn. I had an upper GI and we found out I have two strictures in my esophagus. Additionally, I have been coughing and gaging each time I do cough. It's miserable. I honestly don't know how you're coping right now. My heart goes out to you. ❤️
I hope you get what you need early next year. You have done your research and will be able to find a specialist to help you. I’m sorry you have been feeling bleh and have been down. Fingers crossed for you next year to get the results you need. I’m glad you have such great friends that support you. I hope you have much brighter days! All the best to you Lauren! X
All I can say is that I’m sorry, and that this won’t be forever. I’m sending all the good vibes your way, I know how hard it is but you’re strong and you’ll get through it. ❤️
I've also had acid reflux and gas issues for a while now (even with the painful hiccups, but I can burp), and no doctor has properly helped me, so I get it. For me, I can't eat too late at night or before I go to sleep. (Which sucks, because I get tired after I eat). Regardless, I hope you can recieve some peace for this!
There are several genetic issues and some not genetic ones.
The most interesting one to me is one where your body can't deal with meat properly and it might help to go vegetarian or vegan. I forgot the name but it is genetic.
Maybe it's worth a shot to try that for month if you haven't yet already?
Hope you find something that might work for you
I always feel extremely nauseous in the morning when I eat later in the evening and it’s terrible. But every doctor immediately does a pregnancy test before asking if I have acid reflux 🤦🏼♀️
@@caracheyenne8839 Drinking ginger ale has helped me a lot with this
@@doctordemon9324 should I drink it in the morning or just throughout the day? I’m willing to try anything
@@caracheyenne8839 I have a lot of trouble with nausea in the morning as well and have had multiple doctors try the pregnancy route. I'm so beyond over that so now I had them off by saying there is no possible way I'm pregnant unless they believe in immaculate conception
Please, whatever you do, just keep trying, don't give up and try to live with it. You aren't obligated to suffer and doctors ARE obligated to help. There's a lot of weird shame and guilt around 'bothering' medical professionals that doesn't help anyone but lazy doctors. You suffer and get worse, and the good doctors are eventually left with a horrible mess to clean up. And you're right, by getting doctors to take you seriously, you might just be paving the way for others to be taken seriously later. Your attitude here is really inspiring, too. It takes a lot of courage to stand up for yourself like you are
(Also, your tree is very nice. All the trees I've seen recently are minimalist. What is the point of that??? Go festive or go home🎄)
I've heard that a big way to get doctors to listen to you if you think you have a certain disease is to tell the doctor that a person you know thinks you have it. Your Dad, Your Friend, Your Partner. Someone else. This sets you on the Doctor's side against an Other, and also heightens their awareness that you WILL be telling someone else of the diagnosis. It's shitty that people have to do this, but I found this in a tumblr post that been circulating with a ton of people agreeing that this tactic works.
Maybe going through the process might help future people with this issue? Though it's not your responsibility at all! You don't have to ever go back if you don't want to. Being sick is already such a draining experience :(
I think the email was perfect
Just to explain why the doctor did this. There is a Bactria called Helicobakter and nearly half the western world has it, bc of food contamination. In China it is nearly 100%. A lot of gas and stomach and acid issues are from Helicobactor, although most people don’t have a problem with it. But Because it is so common, it’s there first thing they test for. We do research on it and I have never ever heard it being linked to a muscle misfunction, so that’s very weird. It’s the first standard test. I’m sorry you weren’t listen to. general doctors are not biochemisty and most of the time, they don’t have the chemical/ pharmaceutical information.
Oh Lauren. I really hate that you are not being listened to by doctors. I am sorry you are going through this.
I hope you do get a message from the surgery and they take your feedback seriously.
I have had similar experiences of not being listened to by GPs but relating to the side effects of my epilepsy medication and going into perimenopause at a younger than usual age. Being told my symptoms can't possibly exist for years only to have a neurologist tell me it is well-documented as rare but confirmed side effects of taking Keppra was infuriating but also a relief as I know I was not imagining these symptoms.
Hope you get a decent response and soon a decent way to manage your symptoms.
I also have r-cpd and was misdiagnosed by my primary care physician. Put me on meds for acid reflux and surprise surprise it didn’t work…. I got referred to an ENT in 2021, and thought it was my ticket to a diagnosis, but they just referred me back to a GI (I originally tried to get diagnosed back in 2019 as well). I left the office in tears. I also tried anti-gas pills/meds but they did nothing.
I made the decision to travel to Chicago and undergo the procedure under anesthesia at the clinic where Dr. Bastian practices. Flew half way across the country to get relief. I was officially diagnosed, and got the Botox, and it’s been about 10 months. Seeming like it’ll be permanent, but I’m waiting for the year mark to celebrate that lol.
Literally life changing, and my symptoms seem to be a bit more mild compared to yours. I feel like a new person. Exercise and drinking water was a big trigger for me, so I can finally be as active as I want to be.
I’m crossing all my fingers and toes for you!!!!!! Getting the procedure was some on the best money I have ever spent and 110% worth it.
Ah this gives me so much hope!! Thank you so much for sharing your story with me 😄💕
I wonder why you wouldn't just say to the doctor I think I have this condition, or I was diagnosed with this condition and it's this condition that's now worse and not liveable? Keep fighting the good fight and it might be worth doing all the tests even if you think it's not related because it's possible something could be exacerbating the problem that you're not aware of? Sending much love and best wishes.
That’s what I don’t understand too. If she has this condition certainly it would be in her file? And the dr would read it and know? Or if they happened to overlook it why wouldn’t she bring it up? It’s just not making sense
Because you have to go private to get the official diagnosis which I am yet to do…I didn’t mention the actual name of it because it’s not recognised by the nhs that often so I wanted to see what the gp would diagnosis me with and in hopes they’d change my PPI medication.
I don't have this exact issue but I have a swallowing dysfunction issue that leads to similar gulped/trapped air occasionally. One thing that helps me in a flare up is to eat thicker puree type and to active exhale and then open my mouth to avoid the gulping. Might worth experimenting if you haven't tried it before to help cut down on the air and get more food? Speech therapy also helped me A LOT and cut down on the issues. My overarching diagnosis is Ehlers Danlos Syndrome and it has quite a trickle down effect. I think I was misdiagnosed for 16 ish years before we got to the bottom of it. It's much more common for women and femme presenting people as well.
Hello fellow zebra! Yep EDS causes so many issues and also comes with so many additional comorbidaties...
@@nixi-bixi yep, it's like playing whackamole with "which system will go wonky today"
it has been my understanding that omeprazole shouldn't be taken long term as it can lead to gut and bone issues. an ENT or gastroenterology specialist might be more helpful than a GP because they'd be able to look inside your throat and stomach and see what's going on. general doctors tend to start very general and try to narrow things down which is probably what that doctor was doing. an infection would be the most general thing but also it's hard to know when a patient is overreacting or leaving out information they don't think is important but is or providing information they think is important but is really just distracting. I'm so sorry you're feeling dismissed and hurt by this, the medical field is so vast, corrupt, and poorly organized and it's the patient that ends up fucked over in the end 😔 I hope you're able to find relief soon and that more attention is called to this condition.
Yes, any form of Proton Pump Inhibitors (PPI’s) long term will permanently change your stomach. It is incredibly well documented but people still fall into this trap because they are trusting of their doctors. I’ve fallen into this trap, I was passed from one doctor to another, none of them knew how to help me so they just kept giving me PPI’s, had an endoscopy and the results showed these permanent changes.
I was on these for around 4 years btw
I still don’t have answers
Its so heartbreaking to hear that you are going through this mess too
I find so many similarities in your story to mine. My mom passed away from throat cancer in October & had reflux issues which led to worse symptoms. Thank you for sharing its nice to feel not alone ❤
I'm so sorry you're experiencing this cycle of doctors... As someone with PCOS, I emphasize with constantly having to explain the condition and how it's affected me.
I want you to know that you've had a positive impact with this video - my sister has been struggling with not burping for almost a decade, and because she's young and fit just gets bounced through all the typical responses about lifestyle changes (even when they don't apply). Your video gave her something to bring for discussion to her next appointment.
Big love to you, take care of your mental health, chronic illness is so exhausting to deal with, just existing daily is exhausting, but fighting to trying to be taken seriously, especially if you have multiple things is so dehumanising.
Your Aunt sounds like an angel, she is willing to love you as you are, and accommodations for your health aren't too much to ask.
health privilege is so real, I wish the able-bodied and healthy people could understand more, not suffer it, but just understand how hard just living each day and existing in an abelist world can be.
I hope you find help soon.
Managing health conditions with poorly informed, or at least overworked doctors is so draining. All the best to you
Here I thought I was the only one with a faulty upper esophageal sphincter! After I had gastric bypass a few years ago I somehow gained light burpability and it's been nice after 27 burpless years. Still a frequent throat gurgler though; I call it "glormping." Good luck with your bloats and throats!
I had been going to doctors for YEARS about bad back pain, neck pain, severe headaches, joint pain, acid reflux, choking issues(choking on my own saliva and water), and digestive issues. After an injury that landed me in the emergency room I finally was diagnosed with scoliosis and Chiari malformation but that diagnosis wasn’t told to me until 4 years later. Currently suspected of having EDS(a connective tissue disorder)and POTS(a heart condition) but because I’m on state insurance I can’t get in to the doctors I need to see to be properly diagnosed with those. I have been told every reason under the sun why I feel the way I feel and they were all wrong. Even had a doctor tell me that my diagnosed brain condition only caused balance issues and that it wasn’t a big deal. There is literally 8mm of my brain sticking out of my skull pressing down on my spine but yeah it’s no big deal 🤦♀️ keep pushing until you get the treatment you need. Even though I have a diagnosis I still can’t find a doctor who can help me let alone pronounce the name of my conditions correctly.
As a fellow gurgler, I can relate to everything you've said. Sometimes just knowing there are others like us out there - shoutout to r/noburp! - helps a lot mentally though. Sorry you had such a negative experience. :(
Wooo fellow gurgler!! 🥳 you’re so right the r/burp brings me so much peace to know I’m not the only one going through all of this!!
I understand how frustrating phone call appointments are. Was the wrong diagnosis initially. Complained, thankfully kept the face to face appointment and got the correct one.
I’m so sorry you have to deal with this 😢
It sounds awful
Idk if you might have thought about this but maybe try getting an in-person appointment with a GP and show them videos or clips of you having those "hiccups"? I can't explain it but to me (someone who is absolutely NOT a medical professional) they don't sound like normal hiccups but kinda like "failed burps" idk how to phrase it. It might make them more open to hear you out and do some more research on RCPD
Oh no you’re completely correct, they’re not the true hiccups that most people get it’s my stomach I guess trying it’s hardest to get rid of the air and my throat is like ahahaha no mam I don’t think so!!
I hoping I get a reply from my message to them and I get to go back and then I can show a dr some footage! 🧡
I’m usually a lurker in the comments section, but felt the need to comment since I also have a chronic illness. It makes me sad to hear you go through this, along with the many other comments reporting similar experiences. It’s incredibly disappointing that we, the patients, have to be the one to fight for ourselves. I hope you find a doctor who advocates for you. It’s a grueling process, but we’re all cheering you on!
Same for me as well. I usually just linger and read, but I have a chronic disorder (fibromyalgia), and I could just relate too much to being rushed off by doctors in the past.
/hugs 🤗
I'm so sorry you're going through this! I have chronic stomach issues and have had so many doctors gaslight me and ignore my symptoms. It might be worth doing some additional testing like motility tests to make sure there's nothing else going on since you're having such extreme symptoms. Sending so much love and support!
I'm so sorry you had to deal with this, and I genuinely hope they take your message seriously! They need to show more care in you, and in all their patients in general.
Having bad experiences with doctors is nothing new to me either, similar to you and many of the commenters here. I was misdiagnosed with a benign tumor in my brain and put me on heavy medication for 6+ months which gave me horrible side effects, and in the end as it turns out, that benign tumor never even existed (the doctor never asked me extensively about my symptoms, just took a temporarily high value on my results as enough incentive to make this decision).
Other times, my GP told me when I opened up about my depression and stress to "dress more colorfully" (I'm goth/alt and love to dress that way) and "get a relationship" (I have a partner but it was obviously not her business and saw no reason to mention it as it has no bearing on my health and symptoms) or to "get a job somewhere because company is important, even if you hate your colleagues" (I work from home, therefore yes, I don't go out so often, but I am also very introverted and do hang out quite a lot in calls and do a bunch of stuff with my friends who live all across the world).
Sadly I learned that in order to be taken seriously, I need to do more research and sadly pay more to go to private practices...
Don't mean to go off on a tangent, but point is, I empathize with you and many others here sharing their story.
Don't ever give up, you know yourself, your body and your symptoms better than anyone else, and people SHOULD listen to you and start working with you to find a solution! I truly hope they will.
Chronic illness life is exhausting, you have no idea until it becomes your reality, self advocacy and fighting for your case is a hard ass job for real. I don't have rcpd but I have other chronic disabling conditions which I'm fighting for the right referrals for ect, you got this, I hope they get back to you, request a Gasto referral if they deny it make them note in your records that they're denying it and why and request a second opinion, you have a right to request a referral to a specialist when it's something more than the GP can deal with and they really shouldn't deny it unless they've carried out other tests and can rule in or out other things they can diagnose themselves.
Just as you'd shop around for a good tattoo artist, you should look around for the best doctor that fits you. Also, I would highly avoid these non-personal types of meetings as a doctors job is inherently personal. It also helps to ensure things aren't lost through the airwaves. I would also warn you to judge but not dismiss things doctors say. For instance, I know infections were mentioned and don't know the context in which they were mentioned, but infections could make things worse in several different ways outside of full body illness. This is especially true when speaking of organs that aren't functioning normally. Also HIV is a viral infection and can have an incubation period of multiple years before progressing into full AIDS. This is to say that the human body is incredibly complex, and if you need to keep exploring avenues to ensure your condition doesn't potentially turn into something worse than by all means keep yourself healthy and open to it.
Doctors are people too, trust them but judge their work and methods, find one that you enjoy visiting, and most importantly is to stay informed.
I’ve had a lot of bad apples 🙁 and all the good apples that I build a trust with keep leaving 😭 An idea that might help, your health, taking a multi vitamin and drinking vitamin drinks, or electrolyte drinks. Just to give you some vitamins and energy. I can’t imagine the discomfort you’re going through ON TOP OF not being able to eat until the end of the day, the hunger pains must be so annoying! But it’s the mental part that’s probably worse, not being able to eat out with family and friends. Missing out must feel so lonely I really hope you are talking with people, staying connected, and taking care of yourself 💜
Noooooo!! I’m so sorry to hear that ☹️
@@treacletattsoh no you didn’t see my edited comment haha, but also I wanna add Merry Christmas we are here for you 💗
ive dealt with some health issues as well and with some i give up occassionally because often doctors usually arent very comforting and idk. i usually end up googling some and figuring out what i may have, and then present that to doctor so they can figure if i have it and do tests or prescribe something. im happy you sent the message, we need to stay strong and fierce in situations like this!! :D
best wishes on managing your condition. having a rare disorder is extra difficult as you have to deal with people not understanding how difficult it can be, don't get discouraged. sending hugs and energy.
I do think stool samples and maybe a blood sample would be a good idea simply to rule out everything else. It's much easier to make a case for r-cpd when there is tangible proof it can't be anything else.
Trying to find a proper diagnosis and treatment in England takes YEARS. The amount of hoops you must jump through, it goes on and on. Months and months between appointments. I'd suggest going private to a specialist if that's not an option then just keep returning to the GPs and demand a referral to a specialist. ..eventually they'll get there but be prepared for it to take months to years. Get a folder to keep all info in. Just keep advocating for yourself, patience will be needed!
Misdiagnosis or lack of diagnosis is an issue for alot of people, unfortunately 😔 I think it's important to see the same doctor each time, to keep some continuity. Hopefully that's something you're able to do at your Dr surgery. Like try and stick to seeing one of the two docs you had a good experience with.
I'm so sorry you're struggling, I know exactly how it is with chronic conditions playing havoc on your mental wellbeing. Lucky your friends understand. Xxx
As a fellow hater of being assertive haha, so impressed with your email! 👏👏 Please let us know when/if they reply. Thinking of you and wishing you some relief x
I am so sorry that you're dealing with this; it's incredibly frustrating being chronically ill. (I have MS with sporadic gastroparesis and a slew of other conditions.) It can feel incredibly isolating.
You are amazing, and sometimes, spoons just run the fuck out. Much love to you, and thank you for the amazing content 💜
I’m so sorry that you’ve been having these issues and feel so unheard. You have a lot of love from people you don’t know and i know that doesn’t help to much but I know i’m not alone in saying as someone who would miss your present in their life. God bless your health and I hope the people around you keep your spirits up. Karen is such an anti-strong female name. Any woman with a problem who doesn’t want to take not being listened to lightly. Yes there are older ladies who loose their minds for no reason and act a fool and are racist and angry for some ungodly reasons… but that’s not a term that is acceptable for woman who’re simply demanding to be heard in serious matters.
i have never heard of rcpd before watching your recent videos. but i can relate to the fight with the doctors and the daily struggles as i have a sort of chronic disease myself with extremely dry skin and neurodermititis. thank u for these honest videos! i wish u the best and i hope it gets better and u find a way to live comfortably again!!
The Christmas cozy vibes are givinggg x I love your content so much xx ur iconic lmao
Thank you!!! 🥹🧡
I totally understand the frustration of being misdiagnosed…. It recently happened to me while talking to my doctor about my joint pain that I feel on a daily basis… while I know I’m overweight these health issues have been a problem long before that. It’s gotten to a point where between my mental health issues and my constant pain and other health issues I rarely leave the house and am constantly exhausted and fed up.
I have experiened a very similar condition all of my life. It’s a long story that I don’t want to get into a public forum. But I do want to reach out and say that, in my experience, omeprazole doesn’t work well for the symptoms we both experience. Famotidine (in the US it’s called Pepcid for it’s brand name) is an over the counter stomach acid medication that works much more effectively. I take it every evening after dinner. Also, antibiotics make the condition worse for me. I know you’ve been taking antibiotics lately for your ear infections, so you may want to consider that is part of why you are worse. Also, the doctor you talked to probably is concerned that you have Heliobacter pylori and that is what he means by an infection. You won’t notice symptoms like a typical infection with H. pylori. For example, H. pylori causes ulcers--and can cause symptoms like you are experiencing. So the doctor may be smart to check out that aspect. Again, I have a similar condition and I’m sorry you’re suffering. If I can provide more help or insight, please let me know. Also, I squeek burp just like you do! I hope this all helps you out a bit.
I may be wrong but I've always found famotidine pretty hard to get hold of in the UK - needing to go through like online chemists and answering a bunch of Qs and stuff. It's weird tho coz ranitidine used to be really easy to get hold of when that was around so idk why famotidine isnt just on supermarket shelves! There's also a bit of an issue with the body getting tolerant to famotidine for some people which is why PPIs tend to be a 1st line option, tho not good for everyone and deffo worth asking the dr if you can try Famotidine instead).
H.Pylori is one potential infection, I also wondered if he might have been looking at SIBO which can be triggered by starting PPIs and by taking antibiotics so recent history might suggest Lauren is at risk of it. Idk.
But yeah - these are all good thoughts, I just thought I'd add to them :)
I’ve had acid reflux most of my life. I didn’t start taking medication regularly until I was in my early thirties when things got much worse. I do have moments when I feel like I need to burp but can’t. Thankfully it’s not often and I cannot imagine what you go through daily but those moments for me, are scary. Hoping you can get an official diagnosis soon and get some sort of relief soon!! 💜💜
I was misdiagnosed with 'tension headache', I fact I had a tear in the lining that surrounds the spinal cord and all my brain fluid leaked out. Instead of my brain floating in cerebrospinal fluid, it was slumped at the bottom of my skull causing excruciating pain whenever I was upright. I had to keep returning to the gp and then a and e. Eventually they did a procedure that helped me be upright but it's slowly wearing off. I'm still waiting for treatment 10 months later. It's a very long road to get the right diagnosis.
I unfortunately had similar experience with my psychologist. I was diagnosed with ADHD as a child but didnt have any major problems until I started highschool. I had major anxiety attacks from my lack of attention regulation in classes and it was killing me. I finally decided to take things seriously last year and the psychologist who tested me again for ADHD claimed that my symptoms were just caused by my anxiety (which doesnt make any sense). When i confronted her about that, she managed to claim that I probably have borderline personality and thats the reason for all of my issues. Anyway, its already been a year since i met another, actually creadible psychologist on ADHD and she diagnosed me again with no problem in less than an hour. The first one was just a prick who thought i was jumping on a trend.
I am also on a journey towards an official autism diagnosis which has been harder for me since the previous psychologist tried to talk me out of this one as well. I already have no reason to really trust anything she ever said to me in this regard. So yeah, its not just the medical doctors problem. Psychologists do this as well...
Hi Lauren! I'm a fellow r/noburp lurker. I've watched your videos casually the past couple years and I had no idea you had r-cpd too. I know exactly how you feel. I can count on my hand the number of times I've burped in my 23 years on this earth. I get the gurgles, the bloating, the PAINFUL squawking hiccups, the flatulence, and worst of all, the nausea. I'm also a fellow emetophobe as a result of the r-cpd making me feel nauseous all the time. This past year I've suffered from reflux seemingly out of nowhere and its gotten to the point where I can't eat for 6+hrs beforehand if I want to do any sort of physical activity without feeling incredibly nauseated. I recently saw my family doctor and mentioned the reflux. I was prescribed pantoprazole (similar to omeprazole) but have been hesitant to take it in case it for some reason makes me worse. I'm also hesitant to tell my doctor what I think I have out of fear of it being dismissed as anxiety.
If you ever need someone to talk to about everything thats going on or even just someone to vent to that understands, I'm happy to shoot you a dm on instagram. I'm sorry that your encounter with that doctor was so negative. Hopefully one day r-cpd will be a better known condition among practitioners so no more no-burpers have to deal with being dismissed and incorrectly diagnosed. Sending you lots of love and strength ❤ We're all in this together
I'm so sorry you're having to go through this. Sending lots of love❤❤❤
its likely that he's focused on when your symptoms worsened, and that they sound like H. pylori. He probably wants to rule that out. if that or something like it is present and treated, then maybe you can at least get back to your baseline, which was manageable.
Or SIBO which can be triggered by taking meds like omeprazole and also by antibiotics which I believe Lauren has needed a few courses of lately?
So so sorry you are in all this discomfort and pain 💔 hopefully you can find the real help you need. You have to be your biggest advocate in this situation. I know what it's like to be misdiagnosed and mistreated. Speak up when you can dear ❤❤️🩹
Lauren, I’m so sorry to see how much you’ve been suffering lately. This condition sounds like it has such a significant impact on your day to day life and I don’t think anyone should have to just deal with these symptoms that you have. I’m not sure if this will be any help but if you do continue down the NHS route I would suggest that next time you try and get a face to face appointment and bring along either a friend or your partner. You’re allowed to have another person as an advocate in a medical appointment, and it means that you’re less likely to be fobbed off and they’ll be able to talk about how much they’ve witnessed it affecting your quality of life as someone close to you. I would also say that if a doctor refuses to send you for any tests at all, make sure that you say that you want it in writing in your notes that you wanted that test and they refused to send you for one. Medicine has become increasingly litigious and most doctors would be reluctant to be put in a scenario where it was documented they made the wrong decision. Again I’m so sorry for what you’re going through, your videos always brighten my days and I wish I could some of that back to you now that you’re going through your own struggles 💖
Your better making a formal complaint to the practice manager I've formally worked for a doctor's surgery before (not NHS) but UK. Write an email to them you have nothing to loose
I NEED to hug you sweetheart !!
You're 2 years younger than my daughter, who I haven't seen since my Mum's funeral on the 14th of December 2018.
I too have been taking Omeprazole (I pronounce it Om-op-pre-zole) my darling and that doesn't help me either.
Although I don't have anything that could be called an 'infection', (X -rays don't lie especially when it comes to arthritis), I am ALWAYS diagnosed over the phone !!
I've only had phone consultations, including for my pain levels and asking for my own diagnosis, for last 4 year's as I'm housebound.
Tbh, the way my surgery treat's me as a patient, worries me as to how they care for those older than my 57 years !!
I know they say doctors make the worse patients, but how are us patients meant to trust doctors who can't trust us with the truth ?!?
My hugs are free and always waiting xXxxXx
Items on my Bingo Card for 2023, Lauren's First Burp.
Hey, so I get Botox for my migraines and it really helps. I do have to do it every three months but to me it’s worth it.
So sorry you're having to go through this, Lauren. It must be so frustrating. :( Hope the botox injections help you get your quality of life back. On a side note, I was interested to know what comedian you and Yasmin are going to see? x
Thanks lovely 🥹🧡 and Jack Whitehall 😄
@@treacletatts Awesome! I loved him in Fresh Meat :D x
I'm so sorry about that Lauren, it sounds exhausting and I hope they'll take the e-mail seriously.
I myself has been dealing with like right sided abdominal pain for about a month, maybe a little more. It's not even close to what you're dealing with, it doesn't stop me from doing anything, it's more so an annoyance. But I went to the doctor about 2 weeks ago. She was lovely but basically told me it was just stress. I was a little disappointed with that cause I genuinely don't think it is, but she also said that we might as well do some blood tests and then she booked me in for a phone appointment Friday the 9th. Almost 2 weeks after the appointment. So I sat at my phone on Friday, 15.40 waiting for the call, (I have mad phone anxiety so my fitbit heartbeat was at I think 190 or something, terrible!) but the call never came. At first I thought maybe another patient needed more time or something, but after an hour it seemed unlikely she'd call. And the way doctors offices work here you can't just call them, and it was late so the clinic closed very shortly after my appointment was supposed to be.
It's obviously not the same as you're dealing with but I can see some similarty of how flawed the healthcare system can be even in different countries, both of which are considered "good" healthcare systems.
Wishing you nothing but wellness, you shouldn't have to starve yourself to be able to do anything ❤️
Hello! I really hope that the doctors take you seriously and do a follow up. I have seen so many doctors misdiagnose and refuse to actually help their patients. It happened with my mom when she was constipated and the doctor kept insisting it was an infection, even after my mom was admitted and stayed there for two days with no change. Eventually my mom discharged herself and got a second opinion which confirmed she was constipated. The first doctor did try to refuse to discharge my mom and really wanted to do a follow up with her and readmit her. It was highly annoying, and I would have definitely got in an argument if I was present.
I'm so sorry your going through all this good on you for sending that message to your doctors I hope you get somewhere with it all and finally get some answers. Bloody infection my arse that was just him trying to fob you off hate the way doctors do that to people they never want to listen to anyone.
Normally if drs are fobbing you off they diagnose you with something that doesn't require further tests or treatment, so the fact that he suggested a stool sample to me says he probably was actually trying to look into what might be wrong. Especially because he was working off limited information and she said she went along with it
I thankfully haven't gone through anything like you and many of your commenters have, but I know people who have. I have a friend with rheumatoid arthritis whose doctors dismissed her for years when she was younger and now her fingers are permanently dislocated.
Wishing you all the best, and that email sounded perfectly fine to me. Hopefully the hospital + staff learn something, and that you even get a reply!
having a similar issue with doctors right now. My doctor sent me for tests but when I called for results, it turns out that he sent me for the WRONG tests???? And now the process is starting again, but he's of the belief that there is nothing wrong with me, and isn't listening to me. Like I know my own body, and I know what I'm experiencing right now isn't normal. The average person doesn't experience what I'm going through. In addition, I'm at university and I didn't switch my doctors (like a goddamn fool!) because I was like "oh if I'm sick, I'll want to be at home anyways", but damnnn, having to commute back and forth constantly for various tests (only to find out that he'd sent me for the wrong fucking tests) is infuriating. I'm living off forty pound a week, but thinking of trying to live off twenty and hoping to eventually afford a private doctor, and I mean eventually, because aiiaiaia, that is money I don't have. I feel your pain, Lauren
Oh goodness that all sounds super stressful 😩🧡 so sorry!!
@@treacletatts it's okay, just a long process! Hope you're okay
Proud of you for standing up for yourself, stay strong and I hope you feel better soon 💚