nomorefight

nomorefight

Member
Jul 1, 2019
43
I don't know how much more I can take. I have been sick for 2 months and doctors are still unable to diagnose me. I can't eat and I am almost constantly in pain. I have no immune system so I am dealing with all of this on my own. being told by doctors that I'm wasting there time, nothing is wrong it is just an eating disorder, or that I "shouldn't have gotten sick during a pandemic". I woke up from a diagnostic procedure sobbing when they didn't find anything. The nausea is so bad I spend hours a day laying on the bathroom floor. I am stuck in bed unable to get a doctor on the phone even. I have been poked for IVs and blood draws so many times both my arms are bruised. I have been eating nothing but rice and gatorade for 2 months. My family couldn't care less. I got yelled at for being told by a doctor I can't fly home. Nobody calls to check up, barley anybody believes me. I have tried so hard to accept that it is all in my head but I am sitting here writing this right now feeling like there is a knife in me. Every time a doctor calls I hope so bad for something that will kill me. I don't want to wait for this mystery illness to kill me or go away (whichever comes first). I need it to stop. Getting my hopes up every time my phone rings that maybe it is my mom or my sister checking in but it is only the pharmacy takes more and more of me each time. I have pushed through years of crippling depression for the sake of not wanting to hurt my family, but I have come to realize they wouldn't even care… or notice for that matter. I want it all to stop. I need it all to stop. All the therapy in the world can't fix the neglect from my childhood, the trauma from multiple sexual assaults, the grief from losing someone. I've been able to handle emotional pain I have worked through it and scraped to get by but now adding the physical pain with being told I'm lying and it is not real and being ignored by so many doctors. I would rather die than live through another day of this. I need someone to believe me because I am not sure how much longer I can go.
 
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Alec

Alec

Wizard
Apr 22, 2019
681
I want to hug you SO SO SO BAD right now!!! I'm sorry I can't make it in person, but I'm sending you a very tight hug on some magic waves!

For whatever this is worth, I DO BELIEVE YOU!!! I do! I really do! I don't think anybody would just make this up and further themselves like this while wanting it to stop. And maybe even if somebody would, I believe you when you say it's real, because you say it is, that means it is. I'm so sorry for the doctors that can't find the reason behind it, and I am ABSOLUTELY OUTRAGED at the things they told you like "you shouldn't have gotten sick during a pandemic" as if we control when we get sick especially in our situation, and "it's all in your head" that's so horrible to say when you are struggling so bad and so hard to fix it. AND OF COURSE YOU ARE NOT WASTING THEIR TIME!!! They are wasting YOUR time with their bullshit! It's their freaking job to help people! If they can't help then they failed and that's on them! They should try harder! And I think most of all I'm sorry about how your family has been treating you. Not checking in is just not what a family is supposed to do, they should remember what family is! And getting angry at you for something you can't control is beyond insane! And irresponsible! Because that just adds to your suffering, they really should think more about their actions, words and attitude towards you and appreciate you more! It sounds like you've fought through hell for them, so that you wouldn't hurt them, I would be honored to have you as my family!!❤️❤️❤️

I hope so badly that maybe you will find at least some relief and will be able to breath a little and rest, and get your thoughts together because I know how hard it is to think straight when suffering from physical pain, and in this case it's on top of emotional pain. You are a hero, you are god damn gladiator for fighting so hard!!! I wish I could solve it all for you, and just make it better. Whatever you choose, I support you and I want you to know that I admire you and think you are incredible! I think you are really brave and strong.

I hope you can catch your breath at least for a little while.

Love,
—Alec.
 
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Fragile

Fragile

Broken
Jul 7, 2019
1,496
i've been on a similar situation since at least 4 years, doctors can't find anything wrong with me even when my body is falling apart. most don't even bother and send me home with garbage pills for whatever symptom they find the worst.

the vast majority of doctors are shit at diagnosing anything other than the most common illnesses, but if you suffer from something that they can't clearly see then you are out of luck.
 
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Shero

Shero

Experienced
Dec 19, 2019
274
I believe you. I know it's the internet and blabla, but i truely do.
The problem seems to be that no one who is important to you, or people who could help you alleviate your physical problems, do so. That really must hurt.
With all you've gone through this is the topping of the cake, i can't blame you.

EDIT: It feels like you're drowning in despair and desperately trying to survive. Im truely sorry you feel that way. That most be horrendous.
 
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nomorefight

nomorefight

Member
Jul 1, 2019
43
I want to hug you SO SO SO BAD right now!!! I'm sorry I can't make it in person, but I'm sending you a very tight hug on some magic waves!

For whatever this is worth, I DO BELIEVE YOU!!! I do! I really do! I don't think anybody would just make this up and further themselves like this while wanting it to stop. And maybe even if somebody would, I believe you when you say it's real, because you say it is, that means it is. I'm so sorry for the doctors that can't find the reason behind it, and I am ABSOLUTELY OUTRAGED at the things they told you like "you shouldn't have gotten sick during a pandemic" as if we control when we get sick especially in our situation, and "it's all in your head" that's so horrible to say when you are struggling so bad and so hard to fix it. AND OF COURSE YOU ARE NOT WASTING THEIR TIME!!! They are wasting YOUR time with their bullshit! It's their freaking job to help people! If they can't help then they failed and that's on them! They should try harder! And I think most of all I'm sorry about how your family has been treating you. Not checking in is just not what a family is supposed to do, they should remember what family is! And getting angry at you for something you can't control is beyond insane! And irresponsible! Because that just adds to your suffering, they really should think more about their actions, words and attitude towards you and appreciate you more! It sounds like you've fought through hell for them, so that you wouldn't hurt them, I would be honored to have you as my family!!❤❤❤

I hope so badly that maybe you will find at least some relief and will be able to breath a little and rest, and get your thoughts together because I know how hard it is to think straight when suffering from physical pain, and in this case it's on top of emotional pain. You are a hero, you are god damn gladiator for fighting so hard!!! I wish I could solve it all for you, and just make it better. Whatever you choose, I support you and I want you to know that I admire you and think you are incredible! I think you are really brave and strong.

I hope you can catch your breath at least for a little while.

Love,
—Alec.

thank you, for your kind words and saying you believe me. whether it is true or not it feels nice to hear. I have been told some pretty unbelievable things my medical professionals throughout all of this, and on top of paying thousands of dollars for no answers and having weeks where I am in the ER twice still to be told there is nothing they can do. I am so tired of having to advocate for myself I don't understand why these people become doctors if not to diagnose and treat. yet here I am, another day where I can't seem to quiet my brain. I want to leave my own body so so desperately.
i've been on a similar situation since at least 4 years, doctors can't find anything wrong with me even when my body is falling apart. most don't even bother and send me home with garbage pills for whatever symptom they find the worst.

the vast majority of doctors are shit at diagnosing anything other than the most common illnesses, but if you suffer from something that they can't clearly see then you are out of luck.

I am so sorry for how long you've been dealing with it. I've also been sent home with so many prescriptions and being told to wait it out even though it is very obviously something that will not go away on its own. It is ridiculous how much the medical community has failed so many people. I am not sure if you have had a similar feeling, but I often wonder how differently this would be treated if I were male and not a 20-year-old girl.
 
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disabledandhopeless

disabledandhopeless

Enlightened
Mar 1, 2020
1,893
I'm in a similar situation too.. for years. I can relate to you so so badly.
Doctors only care about treating acute illnesses from what I see. If you're not "dying" yet, generally they don't care because you're not sick enough. Most think they know it all.. or they will just throw you like a ball to other Doctors to handle. It's very sickening. It sucks even more when you have a unsupportive family.
I understand. It's so difficult for you.
 
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xalltoowell

xalltoowell

Loner, loser and complicated wreck
Nov 3, 2019
56
I really feel for you and can't imagine the pain you're going through. I believe you! Your pain is real and you at least deserve to have validation for that. I wish I had more to say to make it better.
Also, if your profile pic is the background of the Lover album, you rule :heart:
 
nomorefight

nomorefight

Member
Jul 1, 2019
43
I really feel for you and can't imagine the pain you're going through. I believe you! Your pain is real and you at least deserve to have validation for that. I wish I had more to say to make it better.
Also, if your profile pic is the background of the Lover album, you rule :heart:

literally before I read your post I saw ur user and was like omg red. you're the first person to notice lol
 
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BPD Barbie

BPD Barbie

Visionary
Dec 1, 2019
2,361
I know how this feels. I went through around a year of stomach issues, being told it was in my head, doing it for attention etc etc. Eventually I got diagnosed with Crohns Disease and had to have 30cm of my intestine removed. KEEP ON PUSHING! Keep on keeping on to your doctors for answers, don't take no for an answer, not when it's your health. Hopefully you will find one, like I did, that takes you seriously for a minute and you can find out what's really going on. Sending you loads of luck and love :heart:
 
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xalltoowell

xalltoowell

Loner, loser and complicated wreck
Nov 3, 2019
56
literally before I read your post I saw ur user and was like omg red. you're the first person to notice lol
I recognized it immediately! Haha I hope you can try and at least stick it out until next Sunday when her Paris concert premieres. I know it'll be tough, but seeing her perform new songs (hello, Death By A Thousand Cuts!) could give you a distraction from all the pain you're undeservedly going through :heart:
 
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GoodPersonEffed

GoodPersonEffed

Brevity is my middle name, but my name was TL
Jan 11, 2020
6,727
I empathize that you get tired of advocating for yourself. I don't know what country you're in or what the medical system is like, but if you can, I'd suggest going to different specialists. For instance, I had a condition a doctor told me there was no hope for, then I went to a physical therapist and she treated it in only a few sessions, no more problem.

Also, a doctor is limited by their specialty. I had a podiatrist tell me one leg was shorter than the other and prescribed orthotics. Of course the same physical therapist figured it out, and exercises fixed it. So I would say to keep trying, maybe talk to physical therapists or occupational therapists who see a much wider variety of issues and can direct you to the appropriate specialist. Or just keep trying different specialists who will approach your issues from different perspectives.

When I was a kid, my mom was sick for a year, it just kept getting worse and worse, and she ended up confined to bed for much of the time. She was told it was in her head, there was nothing wrong, etc. Turns out she had a floating kidney -- it was detached, would float up, go crashing back down. She had to get a slant board, and eventually had surgery to reattach it. So I believe you, others here believe you, and I hope you find someone who believes you who can make a practical difference for you.
 
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Suez

Suez

Experienced
Feb 27, 2020
279
I don't know how much more I can take. I have been sick for 2 months and doctors are still unable to diagnose me. I can't eat and I am almost constantly in pain. I have no immune system so I am dealing with all of this on my own. being told by doctors that I'm wasting there time, nothing is wrong it is just an eating disorder, or that I "shouldn't have gotten sick during a pandemic". I woke up from a diagnostic procedure sobbing when they didn't find anything. The nausea is so bad I spend hours a day laying on the bathroom floor. I am stuck in bed unable to get a doctor on the phone even. I have been poked for IVs and blood draws so many times both my arms are bruised. I have been eating nothing but rice and gatorade for 2 months. My family couldn't care less. I got yelled at for being told by a doctor I can't fly home. Nobody calls to check up, barley anybody believes me. I have tried so hard to accept that it is all in my head but I am sitting here writing this right now feeling like there is a knife in me. Every time a doctor calls I hope so bad for something that will kill me. I don't want to wait for this mystery illness to kill me or go away (whichever comes first). I need it to stop. Getting my hopes up every time my phone rings that maybe it is my mom or my sister checking in but it is only the pharmacy takes more and more of me each time. I have pushed through years of crippling depression for the sake of not wanting to hurt my family, but I have come to realize they wouldn't even care… or notice for that matter. I want it all to stop. I need it all to stop. All the therapy in the world can't fix the neglect from my childhood, the trauma from multiple sexual assaults, the grief from losing someone. I've been able to handle emotional pain I have worked through it and scraped to get by but now adding the physical pain with being told I'm lying and it is not real and being ignored by so many doctors. I would rather die than live through another day of this. I need someone to believe me because I am not sure how much longer I can go.
Unfortunately Im not suprised to hear you say that Doctors suck. I would have to agree that there most certainly is Doctors out there that suck. I hope though that you havent been too tarnished by a few bad doctors to totally dismiss the profession all together? I am a Dr and I would like to think that I have always treated the people I have seen over the years with nothing more than the utmost respect and dignity that they deserve. I think because of my background that I am perhaps more sympathetic to the diversity of people and the kinds of issues that I see. I am more than aware of how some Drs are so quick to dismiss patients who challenge their views about various different things like sexuality, religion, racial equality, gender, OMG the list goes on and on. I just recently had to make an appt with a GP and at the appt i didnt say that I had an MD because I didnt feel at that point that it was relavant. I mentioned that i had already done some research on the particular medication that i was interested in obtaining and the dosage at which i thought would be best for myself and the reasons why i wanted to follow the dosage regime that i had chosen. So i explained this to him and because I had already done this at home and printed it out, I just handed him a copy of what i had done for his records. As he started reading my print out, which was just as I had already explained to him, he was already shaking his head, at the time, i could see that he was dissaproving of what i had done. I was trying not to talk, I wanted to give him the benefit of the doubt, give him time to read what i had written and think about it. Once he had finished he put the note down and turned to me and said "I like that your obviously interested in finding a better medication solution, but we as Drs as professionals study many many yrs to understand medicine & pharmacology. Imagine for instance if I said to you... I think you should use 10 scoops of washing powder for a load of washing because i read on google that was the best thing to do. Imagine the catastrophe you would have in your laundry? He was laughing, thinking what hed just said was hilarious. I was absolutely fucking insulted. Not only was he treating me like i was stupid and not capable of making some decisions for myself and being a part of my own medical decision making process (which you should be), but he was also treating me like the subjugated washer woman waiting on her man to tell her how to work the washing machine correctly, before she goes and put his dinner on the table for him. I must admit, this one really flawed me. I have not come across a Dr quite this bad for a very long time. Luckily he wont be with us for much longer either. My point it though, that you do not need to put up with this kind of care, or lack there of. Doctors are not gods either. GoodPersonEffed pointed out that there are also other medical professionals out there that could also equally be of benefit to you. For instance if you were wantng to follow a Biomechanical approach then you would see a Physical Therapist who works in diagnosing physical abnormalities, restoring physical function and mobility, maintaining physical function, and promoting physical activity and proper function. Or if your the kind of person that prefers a more Hollistic Approach, then you could see an Occupational Therapist. An Occupational Therapist has a role that is essentially similar to that of a Physical Therapist, except that they treat the whole person. I did have one question for you. You said that your symptoms, pain, nausea, not wanting to eat had been happening over the last two months is that correct? The reason why Im asking is that you also mentioned that in those two months all you have been able to consume is rice and Gatorade. One of the things about Gatorade in addition to the sugar it contains is that it contains electrolytes like sodium and potassium. Sports drinks like Gatorade can help replace what we lose during longer duration exercise, especially the heat. Electrolytes are minerals that maintain your bodys ionic balance. This balance is essential for nerve, muscle, and brain functioning. However, when there is an imbalance this may lead to an electrolyte disorder. Not all electrolyte imbalances cause the same symptoms, but many share similar symptoms. Some of the more common symptoms you would see in an electrolyte disorder would include nausea, vomitting, diarrhea, abdominal pain and cramping, muscle cramping, fatigue, lethargy, confusion. At least some of these symptoms seem similar to what you say you are also experiencing, so I wondered whether maybe this could also be a factor in what is going on at the moment? Its something worth thinking about i guess?
 
autumnal

autumnal

Enlightened
Feb 4, 2020
1,950
I don't know how much more I can take. I have been sick for 2 months and doctors are still unable to diagnose me. I can't eat and I am almost constantly in pain. I have no immune system so I am dealing with all of this on my own. being told by doctors that I'm wasting there time, nothing is wrong it is just an eating disorder, or that I "shouldn't have gotten sick during a pandemic". I woke up from a diagnostic procedure sobbing when they didn't find anything. The nausea is so bad I spend hours a day laying on the bathroom floor. I am stuck in bed unable to get a doctor on the phone even. I have been poked for IVs and blood draws so many times both my arms are bruised. I have been eating nothing but rice and gatorade for 2 months. My family couldn't care less. I got yelled at for being told by a doctor I can't fly home. Nobody calls to check up, barley anybody believes me. I have tried so hard to accept that it is all in my head but I am sitting here writing this right now feeling like there is a knife in me. Every time a doctor calls I hope so bad for something that will kill me. I don't want to wait for this mystery illness to kill me or go away (whichever comes first). I need it to stop. Getting my hopes up every time my phone rings that maybe it is my mom or my sister checking in but it is only the pharmacy takes more and more of me each time. I have pushed through years of crippling depression for the sake of not wanting to hurt my family, but I have come to realize they wouldn't even care… or notice for that matter. I want it all to stop. I need it all to stop. All the therapy in the world can't fix the neglect from my childhood, the trauma from multiple sexual assaults, the grief from losing someone. I've been able to handle emotional pain I have worked through it and scraped to get by but now adding the physical pain with being told I'm lying and it is not real and being ignored by so many doctors. I would rather die than live through another day of this. I need someone to believe me because I am not sure how much longer I can go.

I think it would be more fair to say that life sucks, rather than doctors. They have made the effort to run diagnostic procedures in an attempt to find answers, but found nothing. That isn't their fault. Medical professionals are always busy and hard to reach outside of scheduled appointments, even more so during a pandemic. This doesn't mean they are uncaring.

Do you also have an eating disorder, or have in the past? Is there any chance that your current physical symptoms are psychosomatic, as a result of the massive and unfair amount of past trauma you have experienced? This doesn't mean 'all in your head' in a dismissive or insulting sense. Rather, it means that the emotional trauma is genuinely causing the physical symptoms. Often this is because the events are so traumatic that they would totally disable anyone who tried dealing with them mentally and consciously.

What would it mean for you personally if your symptoms were because of trauma? Would it change how you saw your chances of recovery? Would it make you feel less or more justified in considering suicide?

P.S. My comments are only regarding the OP's situation as they described it, and are not intended as commentary on the conditions of those who also responded with their own situations.
 
nomorefight

nomorefight

Member
Jul 1, 2019
43
I think it would be more fair to say that life sucks, rather than doctors. They have made the effort to run diagnostic procedures in an attempt to find answers, but found nothing. That isn't their fault. Medical professionals are always busy and hard to reach outside of scheduled appointments, even more so during a pandemic. This doesn't mean they are uncaring.

Do you also have an eating disorder, or have in the past? Is there any chance that your current physical symptoms are psychosomatic, as a result of the massive and unfair amount of past trauma you have experienced? This doesn't mean 'all in your head' in a dismissive or insulting sense. Rather, it means that the emotional trauma is genuinely causing the physical symptoms. Often this is because the events are so traumatic that they would totally disable anyone who tried dealing with them mentally and consciously.

What would it mean for you personally if your symptoms were because of trauma? Would it change how you saw your chances of recovery? Would it make you feel less or more justified in considering suicide?

P.S. My comments are only regarding the OP's situation as they described it, and are not intended as commentary on the conditions of those who also responded with their own situations.

whether or not i had an eating disorder in the past does not change that the physical pain I am feeling is real. to be told by doctors that something I am literally feeling is wrong doesn't help me either. ok so lets say the symptoms are psychosomatic (which I am not opposed to and have tried to have a conversation about with doctors) it doesn't change that my entire digestive track is inflamed that can be seen on scans. or that my blood cell count is so off it is reccommended I dont leave my apartment at all. I am sitting here typing this right now with the same stabbing pain in my right side that has been there since march 8th. I am still unable to keep any food down or get out of bed without being extremely lightheaded and falling over. all those symptoms are real and so if they are psychosomatic it does not mean doctors get to tell me Im lying. why would I be wanting to pay for all these procedures and scans. these symptoms being a result of trauma doesn't change a single thing about how I feel. if anything it makes things worse because the thought of dealing with this for any longer is killing me. being talked down to is killing me. being ignored and pushed aside is killing me. i wish i had my method prepared right now because I would ctb in a heartbeat all i want is to pull the trigger but of course that is not allowed because the world is terrified of death and so I sit and suffer silently until 2am when it is quiet and I am allowed to feel all my feelings because no one is around and I can turn to having my mental breakdowns on the internet where no one actually knows who I am
 
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autumnal

autumnal

Enlightened
Feb 4, 2020
1,950
Are doctors actually saying you are lying, or are they just saying there is no identifiable physical cause behind the symptoms? Because there is an important distinction.
 
nomorefight

nomorefight

Member
Jul 1, 2019
43
Are doctors actually saying you are lying, or are they just saying there is no identifiable physical cause behind the symptoms? Because there is an important distinction.

one of the many doctors I am seeing (or was seeing before she said this) said that I am "wasting [her] time" and that I "need to stop making up pain when the real problem is [I am] just looking for a reason not to eat"
 
yetme

yetme

Arcanist
Oct 20, 2019
486
I don't know how much more I can take. I have been sick for 2 months and doctors are still unable to diagnose me. I can't eat and I am almost constantly in pain. I have no immune system so I am dealing with all of this on my own. being told by doctors that I'm wasting there time, nothing is wrong it is just an eating disorder, or that I "shouldn't have gotten sick during a pandemic". I woke up from a diagnostic procedure sobbing when they didn't find anything. The nausea is so bad I spend hours a day laying on the bathroom floor.

It's started the same way for me about 3 years ago. I just coudn't eat. Almost anything except liquid food caused so much pain. I was finally diagnosed last year with chlamydia infection. It totally ruined my guts, then went into my lungs, joints, heart and into the brain.
I personally think that if you suddenly get very sick then there's a pathogen behind this. Doctors tell you that eveything is in your head or it's an autoimmune disorder or smth else because they don't want to deal with you. You're on your own now. Nobody will help you except yourself.
Try antibiotics for a couple of weeks, see if your symptoms change.
Also check if any of your symptoms are similar to those mentioned here: http://cpnhelp.org/
Check your blood for Lyme, Chlamydia, Mycoplasma, Toxoplasma, Bartonella etc..
 
D

Deleted member 1465

_
Jul 31, 2018
6,914
I can relate. Fours years of symptoms, disbelieved by doctors and family, finally proved it and they cant find out what's wrong.
Secondary care is shit. The specialists are glorified GPs with a specific interest. If they can't instantly diagnose something with the nail on tests, then they give up and blame it all on mental health.
It's more complex. MH plays a role but there are often physical causal factors too and it's often not an easy process of diagnosis in complex cases.
They know this, they understand co morbidities, but they cba looking into it because it's unlikely they can help and they effectively triage - they help those who are the easiest to help.
I don't know the details of you situation, but if appropriate, I would suggest insisting on a referral to a tertiary care specialist - these guys often lecture and are at the forefront of their specialism and up to date with current thinking. As such, they tend to be more copacetic in the diagnostic procedure. You can research online for a specialist in your areas, and then (depending on how it works locally) request a referral to that specific specialist.
 
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nomorefight

nomorefight

Member
Jul 1, 2019
43
I can relate. Fours years of symptoms, disbelieved by doctors and family, finally proved it and they cant find out what's wrong.
Secondary care is shit. The specialists are glorified GPs with a specific interest. If they can't instantly diagnose something with the nail on tests, then they give up and blame it all on mental health.
It's more complex. MH plays a role but there are often physical causal factors too and it's often not an easy process of diagnosis in complex cases.
They know this, they understand co morbidities, but they cba looking into it because it's unlikely they can help and they effectively triage - they help those who are the easiest to help.
I don't know the details of you situation, but if appropriate, I would suggest insisting on a referral to a tertiary care specialist - these guys often lecture and are at the forefront of their specialism and up to date with current thinking. As such, they tend to be more copacetic in the diagnostic procedure. You can research online for a specialist in your areas, and then (depending on how it works locally) request a referral to that specific specialist.

I agree with them only helping the easy patients with clear-cut symptoms and diagnoses. Meanwhile I haven't been able to relieve this pain that will supposedly "go away on its own" at least according to my doctors. I had never even considered tertiary care but it is definitely something I will bring up at my follow-up. Although a large part of me is ready to give up on this all together and just accept that eventually I'll become malnourished and likely dehydrated enough that my heart just quits on me.
 
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D

Deleted member 1465

_
Jul 31, 2018
6,914
Maybe if you look for a specialist tertiary care gastroenterologist in your area. It will probably be at a teaching hospital. Might be hard to find though. Or ofc you could bring it up at your next appointment. Be warned though, they could be resistant, you might have to be persistent without being too forceful.
 
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