Terrible experience with health service
Just here so people can share their experiences. The previous discussion was closed on account of supposedly giving medical advice. Had ongoing problem for ten years that related to a dodgy cosmetic product that was some microbial substance.
Thanks
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@slovinton will explain one last time. I bought an item labelled 'vaseline' off Amazon marketplace. It's clear from the fact that it has been on the skin for ten years that what was in the jar was not vaseline, but this is what I applied to my skin. In hindsight, a yellow microbial slime. I did not apply it 'daily'. I applied it sometimes months apart. It behaved unusually in that it stayed on my skin for a month. Yes, a full month without reapplying anything.
I did managed to remove this 'slime' with a specific shampoo. But, this was when there was less of this 'slime' on the skin. I didn't connect at the time that it related to the slime/dodgy product on Amazon because I was not so mentally well and you get used to questioning your senses.
So several months later I then applied considerably more, of what I've now deduced is a microbial biofilm/thing it form a robust barrier and clung to my skin. It always did this but it was considerably more of it.
And it has remained ever since despite my efforts to remove it. Do you understand?! God.
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I shouldn't have to even go into more detail than I applied this odd microbial substance to my skin. That should be enough. I really did explain that.
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@Ranald this isn't what I asked. They didn't necessarily do it for a good reason. I mean, I don't know. If you believe someone can imagine something on their skin for ten years then they have a good reason. If you think that is unlikely, then maybe not. Believe what you want to @Ranald. What is real doesn't actually matter. Only whether your GP confirms it is real. Then it's real.
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"Despite his research, Semmelweis's observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community. He could offer no theoretical explanation for his findings of reduced mortality due to hand-washing, and some doctors were offended at the suggestion that they should wash their hands and mocked him for it. In 1865, the increasingly outspoken Semmelweis allegedly suffered a nervous breakdown and was committed to an asylum by his colleagues. In the asylum, he was beaten by the guards. He died 14 days later from a gangrenous wound on his right hand that may have been caused by the beating."
It's a lesson.
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Hi Harry, I have an illness which doesn't fit the diagnostic criteria of either IBS or IBD. In the absense of evidence for IBD my diagnosis is IBS. Even though I have symptoms which fit IBD. I saw many Doctors over a number of years.
Eventually I reached a point where I had to decide whether to accept what I'd been told, move on and make the best of my life, or continue to persue a diagnosis which I might never get, and I was in a very unhappy place mentally looking for these answers which could potentially never happen. Drs were getting reluctant to do more tests.
I made the decision to move on and make the best of my life and for me that was definitely the best decision.
Even when my Mum was diagnosed with IBD I didn't return to try and get another look, putting myself through all the tests again. I didn't see how I would get a different outcome.
I'm in a place where my symptoms are fairly settled with the right medication and diet, I'd only ever put myself through the tests again if I was massively symptomatic and couldn't carry on with the activities that make me happy.
After a lot of years I've decided I either have particularly aggressive IBS or the worlds mildest case of IBD!
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What do you feel would help you? You are your best advocate.
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Thanks for explaining your situation again, @harry01 I know this has been a really difficult experience for you. You've been through a lot trying to get recognised and treated and I can understand that it might feel frustrating to have to explain your situation again to new people.
That said, it feels like the community has offered all it can in terms of suggestions. You've already spoken to several doctors, and if you're still worried, the best thing you can do is to try and keep working with medical professionals. They're the only ones who can properly assess and support you with your conditions. You could look into advocacy to see if they can help you access your healthcare and make your needs known to medical professionals.
POhWER and VoiceAbility are two that might be worth looking into, but there may be others in your area that could help.
Unfortunately at this stage it would be inappropriate for anyone here to offer any further advice on a medical front.
Perhaps you'd like to join in with the community in other areas? I know it doesn't take your current problem away but chatting to others on other topics might provide some distraction from it.
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Hi Harry, I remember that you didn't want to upload an image of your complaint citing your embarrassment. You have since mentioned less intimate areas of your body such as the backs of your knees.
Without such an image, it's virtually impossible for members to guess or advise on this complaint.
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😄
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@rosiescope noone has offered advice on a medical front. I think I just asked for someone with a similar experience. If you don't have it, then it doesn't exist. Fine. I've seen Pohwer already, thanks.
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Nature is very complex and there are a lot of surprising mechanisms it presents with. The way it is able to stay on the skin in spite of the skin shedding mechanisms is one of the fascinating elements of this condition. That's how I deduced it was biological. [removed by moderator - relates to removed content]
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Where possible we like all discussions to continue, but we’re choosing to pause this discussion for now so things can cool down and we can review it. For more information, please read our online community house rules.
We will review it and if we are satisfied the discussion can continue, we will hope to un-pause it by tomorrow.
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Following review, we have now unpaused this discussion.
Please remember that all discussions on Scope’s online community should remain civil, supportive, and safe.
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@Yani09 it can be broken down somehow. It's biological. I sometimes think that some further testing would demonstrate what I am seeing as since I can see it with my eyes on the microscopic scale it is massive.
Two clinicians remarked on the 'yellow' but confused it with discoloured pigmentation. But it is evidence of what I am seeing.
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@Ranald This is very fanciful. Why this one thing? Why this one area of skin? Why can I point to a specific event and time and comment on the odour and slimey texture. Why is my reporting of it entirely consistent.
Why suddenly at 30 when I buy this suspicious microbial substance and apply it. Why no other time? There is no record of me complaining of a skin problem on my medical record prior to this. What 'if' I am right?
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@ranald well, I am happy for this to be tested. I have pushed for whatever testing there is.
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Since I can see it, it's pretty massive on a microscopic scale.
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Can you upload an image of what you see through the microscope (drawing if you arent able to photograph it). What have you doctors said about what is visible through microscope?
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