All in your head...

[Red]

Been trying my hardest to get on with life, to push forward n be productive. With wedding planning to focus on I was hoping that this positive activity might provide enough distraction that my pain might fade and it may be easier to pile through. It's made little difference- the fatigue still knocks me out, the pain still rages on.

Today has been very hard.

Saw NHS neurologist who basically told me that the pain is in my head, despite having confirmed endometriosis, suspected adenomyosis and a lesion in my spinal cord.

She recommended a reduction in painkillers and therapy.

I'm livid and tired and basically devastated. I can barely even form words around the disappointment I feel, the way they speak their opinion like it's fact, yet they say stuff in the same sentence that you know to be wrong.

So sick of the constant invalidation it's hard to keep my head above the water today. I can't.

 

[Shadowrider]

No wonder you feel like this! Invalidation - by itself - is bad enough. Hearing such things from a so-called health professional is even more invalidating, I think.
You have legit diagnoses, don't you? Does she think they are in your head? IMHO she should not be practising.
Your pain is valid and obviously not psychosomatic.

Is there anything that could make you feel better ATM?

 

[WornOutLife]

I wonder how on Earth those people managed to get their degrees! Nonsense!

Sorry you're going through this.

Hope things get better somehow.

Hugs!

 

[Red]

Thanks for your support

I don't know what will help me feel better apart from a big sleep, totally exhausted by it all...

I just don't know how these people are allowed to practice this way, making such a snap decision in such a short time. It's so tiresome and disappointing after bearing all by telling all my problems n symptoms, like being slapped when wet n naked (metaphorically)

 

[LunarPyotr]

I'm not a doctor but I would rather recommend you to choose some alternative options instead of using those painkillers.
After taking enough of that crap, you will end up with a lot of nasty side effects. I was taking some after that one accident and now when I take any of them, I just throw up after a while.
Luckily there is just that damage done but it could be more and nope, it doesn't really matter which brand or form I take : |

 

[Red]

I'm not a doctor but I would rather recommend you to choose some alternative options instead of using those painkillers.
After taking enough of that crap, you will end up with a lot of nasty side effects. I was taking some after that one accident and now when I take any of them, I just throw up after a while.
Luckily there is just that damage done but it could be more and nope, it doesn't really matter which brand or form I take : |

Like I haven't tried them after five years of this crap it's very easy for someone not in pain to say, don't take those painkillers but the actual truth is I can barely move without them.
I wish people would stop n think before dishing out clueless advice.

 

[LunarPyotr]

Like I haven't tried them after five years of this crap it's very easy for someone not in pain to say, don't take those painkillers but the actual truth is I can barely move without them.
I wish people would stop n think before dishing out clueless advice.

You're wrong here. I was no so long time ago and sometimes still am in pain because of my leg which got almost ripped off during my last ctb attempt.
And I'm speaking here from personal experience, so it's not clueless

 

[Red]

You're wrong here. I was no so long time ago and sometimes still am in pain because of my leg which got almost ripped off during my last ctb attempt.
And I'm speaking here from personal experience, so it's not clueless

Clueless from my perspective - my diagnosed illness is progressing is all, it's not the same old nerves stuck in a pain pattern. I've researched it extensively and my pain just doesn't fit into that category,
Sorry if it sounds offensive but it just makes me angry when people assume without knowing what's going on.

 

[Red]

Having thought about the interaction with this horrible doctor, I've come to realise that she just didn't want the extra workload - she questioned why I was there and not closer to home and was annoyed when I simply stated that it was my only choice when booking; she had no intention of treating me unless I had full blown, indisputable MS or something equally as severe and irrefutably neurological in nature.

Considering that I have three or four diagnosed conditions, it was easy for her to dismiss me, thinking that some other doctor would pick up the slack!

I've typed up my complaint but am hanging onto it for now - it'll sit in my outbox forever unless she decides to interfere with my ongoing care from my GP.

A few months ago I might've internalised this indefinitely- now I can see it for what it is and can move on.

Personal growth

 

[FuneralCry]

I am so sorry to hear this. I have been told that physical symptoms are just an result of anxiety/are all in my head too. I find medical professionals unsympathetic and it is exhausting having to deal with appointments. They just want to get rid of patients as quickly as possible.

 

[Red]

I am so sorry to hear this. I have been told that physical symptoms are just an result of anxiety/are all in my head too. I find medical professionals unsympathetic and it is exhausting having to deal with appointments. They just want to get rid of patients as quickly as possible.

Bless you, it's so horribly frustrating, especially when they refuse to run tests and just assume they are right!
I don't think the caring professions are all that caring after all...

 

[mineko]

So therapy is supposed to fix your endometriosis? Good grief. That in itself should warrant treatment. My daughter, who becomes incapacitated monthly, is getting surgery next week for that along with ovarian cysts. I'm sorry you are going through this. Doctors are at their best when they can look at a number and prescribe a pill. For some, I think that's all they know how to do. Sadly, some don't seem to give a crap.

 

[Red]

So therapy is supposed to fix your endometriosis? Good grief. That in itself should warrant treatment. My daughter, who becomes incapacitated monthly, is getting surgery next week for that along with ovarian cysts. I'm sorry you are going through this. Doctors are at their best when they can look at a number and prescribe a pill. For some, I think that's all they know how to do. Sadly, some don't seem to give a crap.

Thank you x

Good luck to your daughter for her surgery

 

[Cryptonite]

Been trying my hardest to get on with life, to push forward n be productive. With wedding planning to focus on I was hoping that this positive activity might provide enough distraction that my pain might fade and it may be easier to pile through. It's made little difference- the fatigue still knocks me out, the pain still rages on.

Today has been very hard.

Saw NHS neurologist who basically told me that the pain is in my head, despite having confirmed endometriosis, suspected adenomyosis and a lesion in my spinal cord.

She recommended a reduction in painkillers and therapy.

I'm livid and tired and basically devastated. I can barely even form words around the disappointment I feel, the way they speak their opinion like it's fact, yet they say stuff in the same sentence that you know to be wrong.

So sick of the constant invalidation it's hard to keep my head above the water today. I can't.

Doctors tell you it's all in your head and you need a therapy?

No, this is definitely not the experience of 90 percent of patients with chronic disease. Screw doctors. Two of them misdiagnosed me and ruined my life.

 

[Red]

Doctors tell you it's all in your head and you need a therapy?

No, this is definitely not the experience of 90 percent of patients with chronic disease. Screw doctors. Two of them misdiagnosed me and ruined my life.

Oh dude the saga continues, this was quite some time ago…

Now they write all my notes with the spin that I'm "anxious", despite being cleared of it via an assessment I sought off my own back. That assessment reads in my notes, "first episode of anxiety".

Not only invalidated and dismissed by my whole GP surgery but my credibility elsewhere is knobbled as these are the notes they will all see if I ever manage to get another referral. Even asking them to definitively rule out malignancy due to alarming symptoms that they keep explaining away with unsatisfactory answers turned into a huge confrontation and a bunch of outright lies written on my medical record concerning the appt.

Once they've made their minds up, there's no fighting it. Thoroughly effed now.

Sorry to hear you've suffered due to big medical egos too, it shouldn't be allowed.

 

[Cryptonite]

Oh dude the saga continues, this was quite some time ago…

Now they write all my notes with the spin that I'm "anxious", despite being cleared of it via an assessment I sought off my own back. That assessment reads in my notes, "first episode of anxiety".

Not only invalidated and dismissed by my whole GP surgery but my credibility elsewhere is knobbled as these are the notes they will all see if I ever manage to get another referral. Even asking them to definitively rule out malignancy due to alarming symptoms that they keep explaining away with unsatisfactory answers turned into a huge confrontation and a bunch of outright lies written on my medical record concerning the appt.

Once they've made their minds up, there's no fighting it. Thoroughly effed now.

Sorry to hear you've suffered due to big medical egos too, it shouldn't be allowed.

:-D Haha, I have actually experienced the very same thing. I told my GP about having been cured from a personality disorder (I underwent an innovative treatment as one of the first patients in my country). I wanted to share this huge success with him, but he instead wrote everything down, said it was impossible to get cured and now no one takes me seriously with my spinal disease.

Such rage I can feel it in my bones. Sometimes I fantasize about scenarios where I punish them. But hey, it's all ok. We will escape by CTB. No problem, let's calm down.

https://iai.tv/articles/medicines-bad-philosophy-threatens-your-health-auid-2225

 

[Red]

:-D Haha, I have actually experienced the very same thing. I told my GP about having been cured from a personality disorder (I underwent an innovative treatment as one of the first patients in my country). I wanted to share this huge success with him, but he instead wrote everything down, said it was impossible to get cured and now no one takes me seriously with my spinal disease.

Such rage I can feel it in my bones. Sometimes I fantasize about scenarios where I punish them. But hey, it's all ok. We will escape by CTB. No problem, let's calm down.

https://iai.tv/articles/medicines-bad-philosophy-threatens-your-health-auid-2225

Lmao gotta say I have briefly considered using that online service that used to be about a few years ago to send them poop in the post… Doubt that would do much to put them right on the whole mental health thing though so ultimately decided against it

But seriously it's so demoralising to have the only people able to help you refuse to do so. The actual percentage of people who actually turn out to have illness of psychogenic origin AND all malingerers put together are fractional, not at all proportionate to the true amount of people they dismiss with not a moment whatsoever of self doubt; I know that this situation is not specific to me but that honestly doesn't make me feel any better, as none of us should be treated this way. If anything it makes me despair even more for humankind.

My revenge will be my ultimate diagnosis, whether pre or post mortem; I believe it will surface undeniably within the next year or so for my symptoms are progressing enough that it will surely be impossible to ignore before too long.

In the meantime, I have begun to record my interactions with them, have screenshotted parts of my online medical records (despite several requests they've not even sent me the form to obtain a full, tangible copy of my own) -for I don't trust them not to go back and amend them once they are proved wrong- and getting all my consultant letters from the past six years of this bullshit in chronological order; preparing to litigate on the very day that my true diagnosis comes.

Hoping m still active when we finally pin it down - kicking up a real storm about this will fuel me to want to fight harder for life, if only to deal a meaty, metaphorical blow to their smug, arrogant faces at long last after the years of torture they've had me endure. MY RAGE SHALL BURN LIKE A THOUSAND SUNS or whatever he says on Always Sunny

…But in the meantime, swinging wildly between resolute rage and defeated resignation