Hi, sorry im new and ill try keep this short l'm male 2911stone from the UK, for the last 3 years I have been getting:
Right sided flank pain, it is really sporadic, can last all day, or a hour and vanish for days, and suddenly comes back out of the blue. My mobility is good during these bouts of pain, and movement does not worsen the pain or relieve it, this isn't muscular, it feels deeper.
It starts in my upper right back where my right kidney is, and after 30 mins will radiate down my side and end with a dull heavy ache in my right teste. So then I have pain down my whole right side.
Recently I get sudden sharp onsets and it makes me feel extremely nauseous.
I have been back and forth to NHS drs who have done:
-Blood tests
-Urine tests and all was fine, they have done 2x kidney ultrasounds
also fine
The GP then said I need to manage the pain myself as there is no more they could do. Another year of pushing and being a pest they
gave me a testicle ultrasound they found 6-8 calcification in each testes, they said this is a incidental find, no further action,
They then reluctantly said I could have a abdomen and pelvis CT scan with contrast, they found 1 'miniscule' pleural nodule in my right lung, and my bertolotti joint fused to my sacrum. They have said this is incidental and no cause of the pain.
Lying down usually relieves it, or makes it more bearable.
I'm at the end of my tether writing this in pain, the GP has said there is literally nothing else they can do and this will need to be managed by myself, and I've just been left.
I wasn't all to happy with that so now they have referred me to Pain management, my appointment is in June 2025.
Whilst I appreciate the GP doing tests, I do feel a bit ignored now and to even suggest that I just need to manage it myself I thought was disgusting, they are also suggesting mental health. So now I'm too scared to do anything in fear ill be classes as a hypochondriac, which I am not.
does anyone have any suggestions?
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Jclay95
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Jclay95 It’s a long shot, but have you had an early morning (8-9am) cortisol blood test? Are there any other symptoms that you haven’t mentioned? Have you been using steroids (asthma inhaler, nasal sprays, tablets, creams) at all? Alternatively, do you have any unusual skin pigmentation?
It is not uncommon for GPs to suggest “health anxiety” / mental health when they are out of their depth and failing to diagnose a condition. Unfortunately ego gets in the way of patient care sometimes
Hello, no I've not had a early cortisol blood test.
In the past and now rarely I get palpitations and extreme dizziness (almost drunk sensation) I treated this as a separate issue maybe 5-10years ago and I have an arachnoid cyst. Those symptoms have pretty much gone. I'll ask about the bloods
Jclay95 [Edit: I've added a bit at the bottom since first writing this]
Whilst it’s a long shot, and some (but unlikely all) of what you report could be caused by your arachnoid cyst, here’s my thinking as to why an early morning (8-9am) cortisol test may be worthwhile:
(1) “Flank pain” is one of the key symptoms of adrenal crisis. It’s so rare for somebody to use the word “flank” that if I hear “flank pain” adrenals are the first thing I think of. Even before getting to adrenal crisis, the low cortisol associated with adrenal insufficiency can cause flank pain.
(2) The adrenals sit right above the kidneys, which is where you report the pain originating.
(3) That the pain comes and goes, lasting for different durations, could be explained by cortisol levels varying (an even rarer condition that the already rare adrenal insufficiency is a cyclic-ACTH generating cyst, which most GPs will likely never have even heard of).
(4) When I developed adrenal insufficiency, but before diagnosis/treatment, I complained of aches in my scrotum. I also had ultrasound to check it out, thinking it might be epididymitis. They didn’t find anything bigger than some tiny deposits. At the same time, I developed deposits in my ears resulting in what looks like cauliflower ear. The moment I started on hydrocortisone treatment for the adrenal insufficiency, the aches in my scrotum went away (and have never returned) and no further depositation has happened in my ears (or not that I've noticed anyway). This depositation is a REALLY rare effect of a number of conditions, including adrenal insufficiency, so I would not expect any doctor that we are likely to meet face-to-face to know about it.
(5) Nausea is a common effect of low cortisol
(6) Extreme dizziness is a common effect of low cortisol (it was what finally made me get a private blood panel done which was the first step of my diagnosis – GPs are typically terrible at diagnosing low cortisol, and I really believe that had I not had that private blood panel done that I might not still be here now - even once I had my blood test results and a private doctor had provided the diagnosis, I still had to argue with my GP practice to get anything done and eventually ended up in Same Day Emergency Care)
[Edit: Just been reading up on arachnoid cysts - apparently, they can affect pituitary function. Given that the pituitary generates the ACTH that trigger the adrenals to generate cortisol, that may be the link for you. See pacificneuroscienceinstitut.... I suggest getting the early morning cortisol blood test done, both now and when your symptoms are at their worst]
Thank you so much for your indepth response. I finally feel listened to. Will definitely look into a cortisol blood test. Maybe privately.
However I'm doubtful of the cyst, although rare and drs may not pick it up, they surely would see a cyst on my CT?
Some evenings a do feel trembly too, again I've just put it down to tiredness and a nap / sleep seems to put it right. I just get really insignificant symptoms. The painful symptoms though I cannot cope with any longer.
Jclay95 I am not an expert on cysts (as far as I know, I don't have one). However, I regularly read in adrenal insufficiency groups of people with pituitary cysts that were so small that they were missed when first scanned despite having a diagnosis of adrenal insufficiency that was later found to be caused by a cyst.
It varies from person to person, but evenings are when people just prior to diagnosis with adrenal insufficiency are likely to be at their worst. Cortisol follows a circadian pattern - although not as smooth or simple as many would suggest, in very simplistic terms it starts high and reduces as the day goes on. At night, less cortisol is required, so a low level is normal (although obviously not too low), but just before waking the healthy body then produces a surge of cortisol. That's the simplified description
It's a growing problem here in the UK, sadly. Have you considered going private? It's not as expensive as you think, especially for initial consultation (with any subsequent treatment likely to be NHS anyhow). And reasonable cost shouldn't be a problem where health is concerned.
Costs for health shouldn't really be an obstacle. Our strategy is go private for the initial consultation and I'm guessing that's only £150 or so. Then should be on accelerator to NHS treatment - if needed. Is £150 an obstacle?
Up to 500 isn't a obstacle. I don't mind spending the money for my health. But I have been made to feel a nuisance for a few years and it worries me that nothing will be found and therefore a waste. Deffo will speak to some private GP's and enquire, i really appreciate your reply
Have you had a scan on your aeorta as it sounds like the pain I had. I woke up in severe pain one morning in Aug 2015. It was pain like I had never had before. I got my wife to call 111 and they sent an ambulance. I thought it maybe kidney stones. Lucky for me a consultant knew what I had and rushed me straight to theatre tellin my wife and I that I only had 20% chance of survival! It turns out that I had an abdominal aeortic aneurysm better known as tripple A, the eize of mine was 9.5cm which ruptured on the table, I needed 9 units of blood. I tell you all this as it is often misdiagnosed. This can be hereditary but I would ask for a scan for that.
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