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Red

Red

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Apr 10, 2019
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535
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

Shadowrider

Student
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Jan 26, 2021
Messages
188
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. :angry:
Your pain is valid and obviously not psychosomatic.

Is there anything that could make you feel better ATM?
 
Red

Red

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Thanks for your support :heart:

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) :pfff:
 
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LunarPyotr

LunarPyotr

Похорони меня возле МКАДа
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Jul 4, 2020
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401
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 : |
 
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Red

Red

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LunarPyotr said:
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

LunarPyotr

Похорони меня возле МКАДа
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Red said:
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

Red

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LunarPyotr said:
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.
 
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Red

Red

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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 :wink:
 
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FuneralCry

FuneralCry

Living dead girl
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Sep 24, 2020
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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.
 
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Red

Red

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FuneralCry said:
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...
 
M

mineko

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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.
 
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Red

Red

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mineko said:
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 :heart:
 
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