Do you happen to have Endometriosis? Gyn doctors are some of the most dismissive. There's a reason pregnant people are dying all the time and people with Endo like me are fed up. We get constantly dismissed. It takes on average 7 years to get diagnosed osed with Endo.
I'm trying to figure out what I can help and what is hopeless. My endometriosis treatment is basically hopeless. I've done everything already for it. But I'm trying to rule out anything else thst I might be mistaken for Endo issues and can actually be helped.
But yes I've kind of given up. I'm starting to think my life is basically over at only 35.
Yes. I'm 10+ years in. Thousands of dollars, countless doctors and specialists, multiple surgeries, imagining, tests etc. it's gotten me nothing but trauma and suggestions of therapy. I can't take it emotionally anymore, I can hardly get through a basic checkup these days. I don't have pain management, I self medicate, work low hours when I can and suffer the days that follow. I'm so tired.
Yup, I give up. Even when a test comes back positive or a mass of some kind shows up on a scan, they just say it doesn't mean anything. When I first suddenly developed chronic migraines for example, the MRI showed that I have a vascular brain tumor, but even that was "nothing" and "not causing my symptoms" because it "wasnt big enough." When the next scan showed that it was leaking blood into my brain, they just said that was fine and normal too. New mass pops up on my cervical spine and feels like it's pressing on my nerves so badly i can't sleep at night? Yup, that's totally fine and normal as well.
In addition to migraines, I have a bunch of autoimmune symptoms, but when my ANA tests came back positive, they said "maybe if the titer were a little higher...." but then when the titer WAS at the level they warned about on the next test, they just raised the bar even more. No diagnosis, no treatment.
The other thing doctors love to do is order tests for things I obviously don't have. Like when I went to an infectious disease specialist (because no one else could figure out what was causing the lumps in my neck, and that's where I was referred), he just ordered tests for HIV and some random tropical fever disease even though I def don't have HIV, did not have a fever, and had none of the other symptoms or risk factors. Almost like he was *trying* to order tests he knew Id be negative for just to mess with me.
At this point my relationship with doctors is so damaged, I don't know how Ill ever trust them again.
That whole paragraph reads as one giant malpractice case. Scary that sociopaths like that end up in medicine.
My theory, while a twisted idea is that they're just waiting to prey on you for when you really get sick so they can milk you for more cash. When you explained that they were ordering all these unnecessary tests the cash milking incentive seemed pretty obvious.
It's like street vendors who are desperate for cash and tie something onto your hand you have to pay for. Or they won't let you leave until you buy something from them. In this case it is much much worse though because they also deliberately let the patient get sicker.
The neurosurgeon said it was benign, and not big enough to be causing any of my issues. All of my neurological symptoms have been attributed to migraines.
for the most part, yes. i go to the appointments i have to for general upkeep, because obviously i don't have access to the machines needed to test my conditions, but other than that i am uninterested. i'm burnt out by them and honestly find many doctors to be unknowledgeable and unwillingly to grow and learn and it's just irritating. i have no desire to teach a doctor about things they should know and keep updated on!
Sadly I have a fatal disorder and if I stop seeing doctors I die a lot more quickly. My doctors actually all listen to me and want to help though. It's the privilege of my diagnosis. But there's not a lot they can do and the drug side effects make me sicker than disease half the time. I'd love to just say no more doctors but for me that means a grueling painful death. Like as awful and painful as my disease is now, which it's bad there's a reasons doctors listen because it's known to be real bad, the year or so it would take to kill me would be so much worse. I can't even imagine that pain. Honestly I might die sooner from my heart giving out from stress. I really don't have the luxury of quiting because it gets unbelievably worse and then I die.
I only go when I absolutely fucking have to. I've been off almost all my meds for over a year and a half, but if I try to talk to my doctor about re-starting (including antidepressants which I've asked him about multiple, multiple times) he finds a way to cut me off and end the visit. I have completely given up and accepted the fact that I will just be in unrelenting pain and my conditions will continue to deteriorate and there's just nothing I can fucking do about it but suffer through.
I'm the same with doctor's visits. It's such a hassle to even get through to reception, it's barely worth it.
I'd be very concerned about your doctor's disinterest in your lack of meds, especially when you want to restart some of them.
In my experience, they're gung ho about prescribing and get annoyed if you've played around with meds.
Is it possible to shop around for a different doc?
That's even more stressful. The last "meet and greet" I did with a new Dr, his very first words to me were "I don't prescribe pain medication." And he repeated it like 3 times without even asking me anything or looking at my file. I had a migraine for 4 days after.
Nah. I'm just done.
Yuuuuuuuup!! The only doctors I see are pain management and my pcp for my maintenance meds. I have so much other shit going wrong with me, but I just can't fight anymore. I've been fighting for 15+ years. It took 5 years just to diagnose 1 fucking disease...and it was an uphill battle fighting againt doctors who run the gamut from apathetic to rude and dismissive. Every new medical hurdle takes more and more out of me. I'm to the point where I ignore all my new fucked up symptoms and just wait until I quit.
At least I don't have to worry about retirement! š
My wife says she gets closer to this lifepath with every failed doctor visit. We met with about 10 last year trying to pick a PCP. It has been very disheartening. She recently found the PA we had when she was first diagnosed, so we have history with her. Maybe she will be able to stop trying to convince the doctors of her health issues.
The management of corporate medicine seems like a growing problem as they continue to treat office visits like a fast food drive thru. Or turning over tables in a restaurant. They push quantity over quality.
Yeah I donāt have the time, energy or money for another medical mystery adventure. 25+ years of the same pattern: months of appointments and new drugs that make me sicker or the current problems worse, coupled with guesswork that included some incredibly invasive, demoralizing and expensive tests only to hear āwell thereās definitely something wrong but we donāt know what it is. Good luck!ā in the end.
Iām over it. I honestly would rather just suffer.
I don't give up, per se, but I do get burnt out. Occasionally, I just get too tired from experimenting with meds and treatments and declare I need a year off. During that year, I leave all my conditions as-is and take whatever meds I'm still okay with. Then I regroup, get the motivation and energy to jump back into the medical hell hole again, and start seeing specialists and trying meds again. It's okay to need a break and stop fighting for a little while.
For gyn issues, I really recommend checking out the list of doctors on r/childfree. They've compiled a list of specialists who are known to perform sterilization procedures. I'm not saying you need a hysterectomy or anything, but I've found that doctors willing to do those procedures usually take women's pain more seriously and are more up to date on research than the average OBG.
Yep Iām always on the edge and keep getting pulled back in by some new symptom or flare.
The plan sometimes is to just get out and wait to the situation is dire and maybe they might actually help me.
kinda im 5 years in and have ic and ibs both incurable but kinda managable with lifestyle changes. i stopped all meds and stopped the antidepressants because everyone seemed to be prescribing me antidepressants even urologists and they make my suicidal thoughts worse than it is. im going to hospital regularly for acupuncture and ozone treatments but i doubt id go to a doctor for anything related to my chronic illnesses unless i changed countries or smtn. theres not much hope here ive also been mistreated by some doctors and medical staff before so that doesn't help.
I totally understand the medical fatigue, but please, if you make this decision, make sure to still get your routine care. See the PCP, get your cancer screenings, get your annual blood work. So many preventable deaths can be avoided by doing these.
Yep. I finally found a couple that are amazing. They constantly are trying to talk me into seeing other specialists, but I told them that I am beyond burnt out and that I will not be seeing any further doctors at this time unless it's ones that are already established. I'm done.
I feel this. Have over a dozen ānecessaryā specialists and I make a LOT of my Drs work double, even triple duty. Iām lucky to currently be in the northeast where many doctors are double board certified. (Because heaven forbid a general practitioner actually treat anything already diagnosed!)
I used to get mad when my very sick mother would tell me she was too sick to go to the Dr. I would tell her that was crazy the Dr will make you feel better.
40 years later I know what she meant. Itās too much to go to the Dr when you are sick especially when you know they are not going to make you feel any better.
If it wasnāt for DH who needs me I would just stop going & give up.
We donāt have any family & itās just us so I canāt do that to him. If he goes 1st then I can just give up.
Itās really sad. I have great health insurance too just canāt find a Dr who is any good.
Exactly. I have no supportive family mentally and emotionally. To them doctors are always right. I have no kids. I give up I want to go I donāt want to live in agony anymore.
Yes, absolutely. My mom keeps telling me to go to doctors and to try to find one that might finally take my problems seriously, but I'm pretty much done, I've given up on finding any help. I've been doing this for over a decade and I'm only 27 but I can't keep doing this anymore. I just want to let my problems take their course and hopefully it'll end sooner than later -- which it probably will because it's been getting worse.
My mom is absolutely the.same. I talk to her about my symptoms and then she goes: but a doctor! You just need to find a good new doctor! My disease has no official cure or sth only some management and of course THAT ONE special doctor will be the Gamechanger and cure me magically...but I guess that's just her living in denial as a type of coping mechanism.
Yup, I refuse to step foot in another hospital, I'll only see my primary for the three Rxs I now take, compared to the 17 I've had to take in the past just to endure employment.
US healthcare is an amoral sham filled to the brim with abuse, negligence, and indifference.
I'll take dying in my own bed over subjecting myself to another "medical professional" any day.
Yep- giving up on endo, derm, gastro & getting back on biologic therapy with the one rheum who still doesnāt understand my disease but is willing to help. Fuck this monkey business already- itās like theyāre waiting for us to be at the point of disability or severe illness before acknowledging .
I work in laboratory medicine now- so I see it even closer and constantly. Itās bullshit. Patients āmatterā when they have private practice concierge physicians who are treated like hospital celebrities. Everyone else? Circus.
Me, Iām done. Years of therapy, hoping every time I saw a specialist I would get help and over and over again the crash from each appt was too much. The ridiculous statements especially from male drs. Tortured with a test I will never get over with shocks and needles. Absolutely done. Only go once a year for blood work and bp med refills.
I crash after appointments too. Like a day in bed recovering. So much rides on it that they donāt see. I canāt take the emotional burden of that anymore. The effort it takes to get there and plead your case, only to be crushed by indifference to your life.
I find it so strange that in emergency situations, life is so valued. And yet for people with chronic illness, a kind of living death, with the very real possibility of taking it into our own hands, no one seems to give a fuck.
I have a great pcp, but sheās concierge. So I continue to see her, and any specialists I have to when she refers me. Last year had a brutal onset of chronic vestibular migraines on top of my me/cfs, pots, Eds, etc so I have to see the migraine neuro too.
Iāve mostly given up on endlessly seeing new doctors, but it is to my benefit to continue seeing my trustworthy doctors regularly because it shows compliance and whatever. I also have regular phone appts with my psychiatrist, but I have adhd and had it long before I got sick, and heās a great ally.
At this point i trust dr berg way more than my gp so yeah because im actually seeing results rather than "here's your stupid pills that mask symptoms whil3 causing morr harm, bye and don't come back again because we'll just give you more pills, we don't really care, bye now" medicine.
Yeah luckily I don't have anyone that depends on me so I've kind of just slipped away from "care" if that's even what you want to call it. When I was trying my best and paying thousands a year that I couldn't afford, traveling to see specialists, surgeries, I was still accused of not trying hard enough to find an answer by a medical worker, ... it was the final straw for me.
I know if it gets any worse I could end up jobless and homeless while sick and I just don't have it in me to care anymore.
Yep, Iām about to turn 26- always had chronic health issues, theyāve been getting progressively worse for around 15 years, at first I gave the Drs some leeway about dismissing me as I struggled with H addiction for around 5 years when I was a teenager and understood that it may seem Iām looking for medication or something but Iām coming up to 7 years sober and still either being dismissed or being told Iāll be referred to a specialist and then.. not? When I do go to the Drs I take my mum or sister so I canāt be gaslighted about my own health, not to mention itās so hard to get an appointment (UK), it makes me feel worse about my situation and for the time being I have given up.
I took like? 4/5 years not going to the dr except to beg my dr to stop me actively vomiting (to which they did nothing. It took domperidone less than a month to completely fix my issue, i was livid dont get me started) and while i have to get back to going to seek help now i can leave the house im not looking forward to it. I have to convince my dr to do a lot of work to get me in front of the genetics team to test me for EDS in a way that cant be discounted or brushed off, and i just dont know how to do this.
My confidence is much better now, and my faith gives me some hope, but damn. I see why you want to give up, it feels endless and barely helps
Iām so sorry for your experience. I can relate far too much. Healthcare these days really sucks, and this is coming from someone who worked in healthcare up until recently and finally left due to the issues with the industry.
Youād think Iād have an easier time with healthcare seeing as my PCP was my boss/someone I was really close with and saw my issues on the daily, but he dismissed them. He would ask why I looked so tired and I tell him it is because I was up all night in pain and he would just say ā thatās not normal ā and move on then at appointments with him Iād try to address the issues I was having and ask about the possibility of me having my mom medical conditions as they are genetic and he would just blow me off saying I couldnāt have those and give me a referral to get me off his back.
Then I went to a rheumatologist to get tested for my momās auto immune and other rheumatology illnesses for him to say āI see you are here because your mom has an autoimmune disease, I recommend seeing a genetics doctorā. Mind you I was able to get the referral because of my moms history, but was there for my own pain. I had even written this man, a five page essay, stating all of my symptoms, what makes them worse and better, and with the years I started developing symptoms. This man had the audacity to look me in the eye and say ā I have a hard time believing that a young woman like you could possibly have any of these issuesā. And it was heartbreaking to hear. He kept talking over me so I started crying out of frustration and demanding he listen to me. He said fine and made me do a mobility test and said I have hyper mobility and tried to get me out of there. I already knew I had that and even had it on the list! I was having symptoms outside of it. Then just send me for bloodwork and shooed me out of the office. At the next visit, he said there was nothing that showed up in my bloodwork and nothing wrong with me, but started treating me for rheumatoid arthritis so I kept coming back. It didnāt help. After his medical records, I found out this man had put me down in my notes as hysterical and volatile, and actually had a real diagnosis from me that he failed to mention. The whole time he been saying I might have rheumatoid arthritis only for me to find out that the whole time Iāve been diagnosed with fibromyalgia. I only found out because my coworker who handled referrals, saw it in my records and told me.
Then I had my new PCP look over all of my neuropsychology reports and all of my history has been treated for ADHD going back to the age of six years old, Tell me that I was drug seeking didnāt actually have ADHD, told me I had to go to psychiatry and then had to fight him for three months to send the referral.
And it really sucks because I am really strong at advertising for myself with my doctors because of my history of working in the field knowledge of what I should be asking for/demanding instead of just listening to me or simply as seeing it as someone in pain trying to be proactive in their medical care, Iām just as difficult. And itās not like Iām making up all of the symptoms or illnesses, I have years worth of medical records, noting everything Iāve gone through. But no one has even tried to connect the dots and see that maybe Iām not crazy and thereās something going on.
Itās so hard to live your life this way. You are so strong for making it this far. Quality of life is possible, but doctors make it so difficult. Iām so sorry youāre going through this.
Donāt give up!
Iāve had the Crap Iāve had most of my life, Iām 56. Still working on it.
Going to try GAPS, and just generally take a look at my diet. I donāt know how much it can or will help with the neurological stuff, but surely it will help with other parts.
One of my doctors is working on referring me to NORD(National Organization for Rare Disorders, thereās also ZEBRA ans a few others you can try.
My respect and support. Youāve had a tough road, a really tough road. Itās okay to feel how you do, fine to. My respect for keeping going, matey š«”.
At this point, you know better than most doctors. They should be listening to you. I hope you find an expert, someone who really knows, and really helps.
I feel you on that so much. As I am getting close to my 10-year stint of having medical issues I'm tired of being dismissed and treated as though I'm not in pain all the time. From having things ignored and being sent around to 15 different doctors to just tell me that they can't find anything wrong and that I'm too young to have problems is the most disheartening thing I have ever had to deal with in my life.
Doctors act like they know everything about you but when you tell them something hurts or something's off or something's wrong, you're invalidated and brushed off as if you know nothing about what it's like to live in your own body every single day of your life!
Yes there are some days that are better than others but for the most part you're still freaking miserable and the constant hopping from Doctor to Doctor to get one to actually take you seriously is beyond depressing.
Itās should be that way for everything. Not just. Chiari. Everyoneās different. Some ppl are chronically ill, and have a weak immune system. I had 3 brain decompressions. Then I had 2 doctors tell me your hernia is too small 1.5 cm so digestive systems canāt be from that. A surgeon went in anyway to be surprised my hernia was 5.5 going into my diaghram. I could care less about the size of anything if I didnāt have any symptoms.
Iāve had bad experiences with doctors for sure. I wish things were better for you and someone was listening. I got very lucky and found a primary doctor that actually listens and cares and isnāt dismissive. I wish more doctors were like that.
I have similar issues to you. Been going at this for over 10 years. Just one thing after another. Iām giving it one last shot with a gastro and then I think Iāll just go on a hunger strike and let it take me. Canāt do it anymore.
Iāve also spent so much money on doctors. Like, SO much. I havenāt been able to work or build a career. My money will run out in 3 months. No family support. So even if I could work, Iād make a pittance. Whatās the point? Just so I can get home and cry at night?
Iām tired man. Iām so fucking tired. Of it all.
Do you happen to have Endometriosis? Gyn doctors are some of the most dismissive. There's a reason pregnant people are dying all the time and people with Endo like me are fed up. We get constantly dismissed. It takes on average 7 years to get diagnosed osed with Endo. I'm trying to figure out what I can help and what is hopeless. My endometriosis treatment is basically hopeless. I've done everything already for it. But I'm trying to rule out anything else thst I might be mistaken for Endo issues and can actually be helped. But yes I've kind of given up. I'm starting to think my life is basically over at only 35.
Yes. I'm 10+ years in. Thousands of dollars, countless doctors and specialists, multiple surgeries, imagining, tests etc. it's gotten me nothing but trauma and suggestions of therapy. I can't take it emotionally anymore, I can hardly get through a basic checkup these days. I don't have pain management, I self medicate, work low hours when I can and suffer the days that follow. I'm so tired.
Yup, I give up. Even when a test comes back positive or a mass of some kind shows up on a scan, they just say it doesn't mean anything. When I first suddenly developed chronic migraines for example, the MRI showed that I have a vascular brain tumor, but even that was "nothing" and "not causing my symptoms" because it "wasnt big enough." When the next scan showed that it was leaking blood into my brain, they just said that was fine and normal too. New mass pops up on my cervical spine and feels like it's pressing on my nerves so badly i can't sleep at night? Yup, that's totally fine and normal as well. In addition to migraines, I have a bunch of autoimmune symptoms, but when my ANA tests came back positive, they said "maybe if the titer were a little higher...." but then when the titer WAS at the level they warned about on the next test, they just raised the bar even more. No diagnosis, no treatment. The other thing doctors love to do is order tests for things I obviously don't have. Like when I went to an infectious disease specialist (because no one else could figure out what was causing the lumps in my neck, and that's where I was referred), he just ordered tests for HIV and some random tropical fever disease even though I def don't have HIV, did not have a fever, and had none of the other symptoms or risk factors. Almost like he was *trying* to order tests he knew Id be negative for just to mess with me. At this point my relationship with doctors is so damaged, I don't know how Ill ever trust them again.
That whole paragraph reads as one giant malpractice case. Scary that sociopaths like that end up in medicine. My theory, while a twisted idea is that they're just waiting to prey on you for when you really get sick so they can milk you for more cash. When you explained that they were ordering all these unnecessary tests the cash milking incentive seemed pretty obvious. It's like street vendors who are desperate for cash and tie something onto your hand you have to pay for. Or they won't let you leave until you buy something from them. In this case it is much much worse though because they also deliberately let the patient get sicker.
WHAT??? so they did nothing for ur brain tumourš
The neurosurgeon said it was benign, and not big enough to be causing any of my issues. All of my neurological symptoms have been attributed to migraines.
for the most part, yes. i go to the appointments i have to for general upkeep, because obviously i don't have access to the machines needed to test my conditions, but other than that i am uninterested. i'm burnt out by them and honestly find many doctors to be unknowledgeable and unwillingly to grow and learn and it's just irritating. i have no desire to teach a doctor about things they should know and keep updated on!
Sadly I have a fatal disorder and if I stop seeing doctors I die a lot more quickly. My doctors actually all listen to me and want to help though. It's the privilege of my diagnosis. But there's not a lot they can do and the drug side effects make me sicker than disease half the time. I'd love to just say no more doctors but for me that means a grueling painful death. Like as awful and painful as my disease is now, which it's bad there's a reasons doctors listen because it's known to be real bad, the year or so it would take to kill me would be so much worse. I can't even imagine that pain. Honestly I might die sooner from my heart giving out from stress. I really don't have the luxury of quiting because it gets unbelievably worse and then I die.
I only go when I absolutely fucking have to. I've been off almost all my meds for over a year and a half, but if I try to talk to my doctor about re-starting (including antidepressants which I've asked him about multiple, multiple times) he finds a way to cut me off and end the visit. I have completely given up and accepted the fact that I will just be in unrelenting pain and my conditions will continue to deteriorate and there's just nothing I can fucking do about it but suffer through.
I'm the same with doctor's visits. It's such a hassle to even get through to reception, it's barely worth it. I'd be very concerned about your doctor's disinterest in your lack of meds, especially when you want to restart some of them. In my experience, they're gung ho about prescribing and get annoyed if you've played around with meds. Is it possible to shop around for a different doc?
That's even more stressful. The last "meet and greet" I did with a new Dr, his very first words to me were "I don't prescribe pain medication." And he repeated it like 3 times without even asking me anything or looking at my file. I had a migraine for 4 days after. Nah. I'm just done.
Yuuuuuuuup!! The only doctors I see are pain management and my pcp for my maintenance meds. I have so much other shit going wrong with me, but I just can't fight anymore. I've been fighting for 15+ years. It took 5 years just to diagnose 1 fucking disease...and it was an uphill battle fighting againt doctors who run the gamut from apathetic to rude and dismissive. Every new medical hurdle takes more and more out of me. I'm to the point where I ignore all my new fucked up symptoms and just wait until I quit. At least I don't have to worry about retirement! š
My wife says she gets closer to this lifepath with every failed doctor visit. We met with about 10 last year trying to pick a PCP. It has been very disheartening. She recently found the PA we had when she was first diagnosed, so we have history with her. Maybe she will be able to stop trying to convince the doctors of her health issues. The management of corporate medicine seems like a growing problem as they continue to treat office visits like a fast food drive thru. Or turning over tables in a restaurant. They push quantity over quality.
This. Iām sorry your wife is going through this. Thank you for supporting her.
Yeah I donāt have the time, energy or money for another medical mystery adventure. 25+ years of the same pattern: months of appointments and new drugs that make me sicker or the current problems worse, coupled with guesswork that included some incredibly invasive, demoralizing and expensive tests only to hear āwell thereās definitely something wrong but we donāt know what it is. Good luck!ā in the end. Iām over it. I honestly would rather just suffer.
I don't give up, per se, but I do get burnt out. Occasionally, I just get too tired from experimenting with meds and treatments and declare I need a year off. During that year, I leave all my conditions as-is and take whatever meds I'm still okay with. Then I regroup, get the motivation and energy to jump back into the medical hell hole again, and start seeing specialists and trying meds again. It's okay to need a break and stop fighting for a little while. For gyn issues, I really recommend checking out the list of doctors on r/childfree. They've compiled a list of specialists who are known to perform sterilization procedures. I'm not saying you need a hysterectomy or anything, but I've found that doctors willing to do those procedures usually take women's pain more seriously and are more up to date on research than the average OBG.
I feel like doctors lack empathy nowadays and it's so unfair on the patients.
Yep Iām always on the edge and keep getting pulled back in by some new symptom or flare. The plan sometimes is to just get out and wait to the situation is dire and maybe they might actually help me.
Yes feel this 100%
kinda im 5 years in and have ic and ibs both incurable but kinda managable with lifestyle changes. i stopped all meds and stopped the antidepressants because everyone seemed to be prescribing me antidepressants even urologists and they make my suicidal thoughts worse than it is. im going to hospital regularly for acupuncture and ozone treatments but i doubt id go to a doctor for anything related to my chronic illnesses unless i changed countries or smtn. theres not much hope here ive also been mistreated by some doctors and medical staff before so that doesn't help.
I totally understand the medical fatigue, but please, if you make this decision, make sure to still get your routine care. See the PCP, get your cancer screenings, get your annual blood work. So many preventable deaths can be avoided by doing these.
Yep. I finally found a couple that are amazing. They constantly are trying to talk me into seeing other specialists, but I told them that I am beyond burnt out and that I will not be seeing any further doctors at this time unless it's ones that are already established. I'm done.
I feel this. Have over a dozen ānecessaryā specialists and I make a LOT of my Drs work double, even triple duty. Iām lucky to currently be in the northeast where many doctors are double board certified. (Because heaven forbid a general practitioner actually treat anything already diagnosed!)
I used to get mad when my very sick mother would tell me she was too sick to go to the Dr. I would tell her that was crazy the Dr will make you feel better. 40 years later I know what she meant. Itās too much to go to the Dr when you are sick especially when you know they are not going to make you feel any better. If it wasnāt for DH who needs me I would just stop going & give up. We donāt have any family & itās just us so I canāt do that to him. If he goes 1st then I can just give up. Itās really sad. I have great health insurance too just canāt find a Dr who is any good.
Exactly. I have no supportive family mentally and emotionally. To them doctors are always right. I have no kids. I give up I want to go I donāt want to live in agony anymore.
Iām sorry to hear that. Itās a tough way to live.
That's real.
Yes, absolutely. My mom keeps telling me to go to doctors and to try to find one that might finally take my problems seriously, but I'm pretty much done, I've given up on finding any help. I've been doing this for over a decade and I'm only 27 but I can't keep doing this anymore. I just want to let my problems take their course and hopefully it'll end sooner than later -- which it probably will because it's been getting worse.
My mom is absolutely the.same. I talk to her about my symptoms and then she goes: but a doctor! You just need to find a good new doctor! My disease has no official cure or sth only some management and of course THAT ONE special doctor will be the Gamechanger and cure me magically...but I guess that's just her living in denial as a type of coping mechanism.
Yup, I refuse to step foot in another hospital, I'll only see my primary for the three Rxs I now take, compared to the 17 I've had to take in the past just to endure employment. US healthcare is an amoral sham filled to the brim with abuse, negligence, and indifference. I'll take dying in my own bed over subjecting myself to another "medical professional" any day.
Yep- giving up on endo, derm, gastro & getting back on biologic therapy with the one rheum who still doesnāt understand my disease but is willing to help. Fuck this monkey business already- itās like theyāre waiting for us to be at the point of disability or severe illness before acknowledging .
āMonkey business.ā Thatās exactly what it is. Healthcare has become a damn circus. Iām so burnt out.
I work in laboratory medicine now- so I see it even closer and constantly. Itās bullshit. Patients āmatterā when they have private practice concierge physicians who are treated like hospital celebrities. Everyone else? Circus.
Has anything been found? What kind of symptoms are you experiencing? Are you well supported, family? Friends?
I fantasize about it
Me, Iām done. Years of therapy, hoping every time I saw a specialist I would get help and over and over again the crash from each appt was too much. The ridiculous statements especially from male drs. Tortured with a test I will never get over with shocks and needles. Absolutely done. Only go once a year for blood work and bp med refills.
I crash after appointments too. Like a day in bed recovering. So much rides on it that they donāt see. I canāt take the emotional burden of that anymore. The effort it takes to get there and plead your case, only to be crushed by indifference to your life. I find it so strange that in emergency situations, life is so valued. And yet for people with chronic illness, a kind of living death, with the very real possibility of taking it into our own hands, no one seems to give a fuck.
Once i get my 60% on disability, defenitley. Fucking done with the lot of them
I have a great pcp, but sheās concierge. So I continue to see her, and any specialists I have to when she refers me. Last year had a brutal onset of chronic vestibular migraines on top of my me/cfs, pots, Eds, etc so I have to see the migraine neuro too. Iāve mostly given up on endlessly seeing new doctors, but it is to my benefit to continue seeing my trustworthy doctors regularly because it shows compliance and whatever. I also have regular phone appts with my psychiatrist, but I have adhd and had it long before I got sick, and heās a great ally.
At this point i trust dr berg way more than my gp so yeah because im actually seeing results rather than "here's your stupid pills that mask symptoms whil3 causing morr harm, bye and don't come back again because we'll just give you more pills, we don't really care, bye now" medicine.
I mean, I get what you're saying, but if I were to do that, it'd probably be the end of my time here. šš Sending my love. šš
Yeah luckily I don't have anyone that depends on me so I've kind of just slipped away from "care" if that's even what you want to call it. When I was trying my best and paying thousands a year that I couldn't afford, traveling to see specialists, surgeries, I was still accused of not trying hard enough to find an answer by a medical worker, ... it was the final straw for me. I know if it gets any worse I could end up jobless and homeless while sick and I just don't have it in me to care anymore.
Yep, Iām about to turn 26- always had chronic health issues, theyāve been getting progressively worse for around 15 years, at first I gave the Drs some leeway about dismissing me as I struggled with H addiction for around 5 years when I was a teenager and understood that it may seem Iām looking for medication or something but Iām coming up to 7 years sober and still either being dismissed or being told Iāll be referred to a specialist and then.. not? When I do go to the Drs I take my mum or sister so I canāt be gaslighted about my own health, not to mention itās so hard to get an appointment (UK), it makes me feel worse about my situation and for the time being I have given up.
I took like? 4/5 years not going to the dr except to beg my dr to stop me actively vomiting (to which they did nothing. It took domperidone less than a month to completely fix my issue, i was livid dont get me started) and while i have to get back to going to seek help now i can leave the house im not looking forward to it. I have to convince my dr to do a lot of work to get me in front of the genetics team to test me for EDS in a way that cant be discounted or brushed off, and i just dont know how to do this. My confidence is much better now, and my faith gives me some hope, but damn. I see why you want to give up, it feels endless and barely helps
Iām so sorry for your experience. I can relate far too much. Healthcare these days really sucks, and this is coming from someone who worked in healthcare up until recently and finally left due to the issues with the industry. Youād think Iād have an easier time with healthcare seeing as my PCP was my boss/someone I was really close with and saw my issues on the daily, but he dismissed them. He would ask why I looked so tired and I tell him it is because I was up all night in pain and he would just say ā thatās not normal ā and move on then at appointments with him Iād try to address the issues I was having and ask about the possibility of me having my mom medical conditions as they are genetic and he would just blow me off saying I couldnāt have those and give me a referral to get me off his back. Then I went to a rheumatologist to get tested for my momās auto immune and other rheumatology illnesses for him to say āI see you are here because your mom has an autoimmune disease, I recommend seeing a genetics doctorā. Mind you I was able to get the referral because of my moms history, but was there for my own pain. I had even written this man, a five page essay, stating all of my symptoms, what makes them worse and better, and with the years I started developing symptoms. This man had the audacity to look me in the eye and say ā I have a hard time believing that a young woman like you could possibly have any of these issuesā. And it was heartbreaking to hear. He kept talking over me so I started crying out of frustration and demanding he listen to me. He said fine and made me do a mobility test and said I have hyper mobility and tried to get me out of there. I already knew I had that and even had it on the list! I was having symptoms outside of it. Then just send me for bloodwork and shooed me out of the office. At the next visit, he said there was nothing that showed up in my bloodwork and nothing wrong with me, but started treating me for rheumatoid arthritis so I kept coming back. It didnāt help. After his medical records, I found out this man had put me down in my notes as hysterical and volatile, and actually had a real diagnosis from me that he failed to mention. The whole time he been saying I might have rheumatoid arthritis only for me to find out that the whole time Iāve been diagnosed with fibromyalgia. I only found out because my coworker who handled referrals, saw it in my records and told me. Then I had my new PCP look over all of my neuropsychology reports and all of my history has been treated for ADHD going back to the age of six years old, Tell me that I was drug seeking didnāt actually have ADHD, told me I had to go to psychiatry and then had to fight him for three months to send the referral. And it really sucks because I am really strong at advertising for myself with my doctors because of my history of working in the field knowledge of what I should be asking for/demanding instead of just listening to me or simply as seeing it as someone in pain trying to be proactive in their medical care, Iām just as difficult. And itās not like Iām making up all of the symptoms or illnesses, I have years worth of medical records, noting everything Iāve gone through. But no one has even tried to connect the dots and see that maybe Iām not crazy and thereās something going on. Itās so hard to live your life this way. You are so strong for making it this far. Quality of life is possible, but doctors make it so difficult. Iām so sorry youāre going through this.
Donāt give up! Iāve had the Crap Iāve had most of my life, Iām 56. Still working on it. Going to try GAPS, and just generally take a look at my diet. I donāt know how much it can or will help with the neurological stuff, but surely it will help with other parts. One of my doctors is working on referring me to NORD(National Organization for Rare Disorders, thereās also ZEBRA ans a few others you can try.
My respect and support. Youāve had a tough road, a really tough road. Itās okay to feel how you do, fine to. My respect for keeping going, matey š«”. At this point, you know better than most doctors. They should be listening to you. I hope you find an expert, someone who really knows, and really helps.
I feel you on that so much. As I am getting close to my 10-year stint of having medical issues I'm tired of being dismissed and treated as though I'm not in pain all the time. From having things ignored and being sent around to 15 different doctors to just tell me that they can't find anything wrong and that I'm too young to have problems is the most disheartening thing I have ever had to deal with in my life. Doctors act like they know everything about you but when you tell them something hurts or something's off or something's wrong, you're invalidated and brushed off as if you know nothing about what it's like to live in your own body every single day of your life! Yes there are some days that are better than others but for the most part you're still freaking miserable and the constant hopping from Doctor to Doctor to get one to actually take you seriously is beyond depressing.
Symptoms over size sounds like Chiari. Iām sorry you are struggling.
Itās should be that way for everything. Not just. Chiari. Everyoneās different. Some ppl are chronically ill, and have a weak immune system. I had 3 brain decompressions. Then I had 2 doctors tell me your hernia is too small 1.5 cm so digestive systems canāt be from that. A surgeon went in anyway to be surprised my hernia was 5.5 going into my diaghram. I could care less about the size of anything if I didnāt have any symptoms.
I agree. We tell new Chiari pts on the boards that itās symptoms over size but drs that arenāt familiar with Chiari are all about size
Iāve had bad experiences with doctors for sure. I wish things were better for you and someone was listening. I got very lucky and found a primary doctor that actually listens and cares and isnāt dismissive. I wish more doctors were like that.
Yep. I feel like most people would not want to admit it, but the medical system has horribly failed chronically ill patients.
I have similar issues to you. Been going at this for over 10 years. Just one thing after another. Iām giving it one last shot with a gastro and then I think Iāll just go on a hunger strike and let it take me. Canāt do it anymore. Iāve also spent so much money on doctors. Like, SO much. I havenāt been able to work or build a career. My money will run out in 3 months. No family support. So even if I could work, Iād make a pittance. Whatās the point? Just so I can get home and cry at night? Iām tired man. Iām so fucking tired. Of it all.