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Re: New and beyond miserable...

Postby Savaici » 10 Sep 2014, 13:45

I sometimes think we should band together into a "sore bum that doctors say that they can do nothing for" club. Basically that is why I made the Chronic Anal and Rectal Pain sub-forum so that we might be able to gather together those of us who might be rid of the wretched incredibly painful spasms that can linger for 18 months as with me, or for shorter or longer periods with others, which then just turns to chronic dull pain/pressure/feeling like there is a golf ball stuck there and so on and on. There is so little (no?) research done on this, but must be so many out there who suffer with so little recourse to help and understanding.
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Re: New and beyond miserable...

Postby Datura » 11 Sep 2014, 04:57

Thank you Scientist2516. I appreciate the thoughts! It is frustrating but sadly a brick wall I have been hitting for years in all areas of my health. It took me 10 years to finally get someone to send me to a specialist who diagnosed me with fibromyalgia. I'd known for years and years that's what I was dealing with but most GP's just poo poo'd me. Most of them here (Australia) seem to have their eyes glaze over and ignore everything as soon as they realize you have IBS (not sure that's what I even deal with, I have red flag symptoms but because nothing has ever cropped up they ignore those) or anxiety they just switch off.

I have tried high fibre diets in the past and they weren't helpful. More so with the pain than anything. Sometimes they send me to the toilet, sometimes they clog me up so bad I end up with these haematoma's that are all kinds of miserable.

He had nothing useful to say beyond the more fibre spiel. I think I'll head up to the nearest capital city in the next few months and see a professional there that has more of a clue (the joys of living regional, although where I live should be big enough to attract decent specialists, sadly it doesn't).

Thanks again!
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Re: New and beyond miserable...

Postby woundedspirit » 11 Sep 2014, 08:25

So sorry your appointment wasn't more productive for you. I swear some doctors are totally unsympathetic it makes you wonder why they went into medicine in the first place. Try not to despair and keep seeking the answers you need.
Hemorrhoid Surgery
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Re: New and beyond miserable...

Postby Roidsfizzman » 11 Sep 2014, 09:35

Hi Datura,

Sorry to hear that your doctor was unable to find the source of pain. You note a finger exam. Did the doctor do anal exam with a scope? If you have internal hems, the hems can not be seen without the scope. Internal hems are not supposed to cause pain, but my butt did not get the memo as I have had pain from internal hems.
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Re: New and beyond miserable...

Postby Datura » 12 Sep 2014, 04:04

Thank you woundedspirit. Yes, unfortunately most of them these days seem to be! Or once they realize that you're too hard a case to be bothered with just stop bothering. Follow up appointments don't make them nearly as much initial consults do so they're happy to send you away with nothing. And I will :)

Roidsfizzman, that's exactly why I was there! I had a colonoscopy done in May and my GI specialist, when I first woke up afterwards, told me I had an internal hemmie and to eat more fibre (what a surprise). When I had my follow up with him a month later I asked him if that's what was causing my pain and he said I didn't have one! That he'd got some pictures of that area and they showed nothing. He said the pain was from straining and that he couldn't help me and sent me on my way. And that's exactly why I went to see the CRS! No, he didn't do a scope. I only got the finger exam because I reminded him I was there because of pain. Thank you!
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Re: New and beyond miserable...

Postby Datura » 12 Sep 2014, 04:10

Savaici sorry! I somehow missed your post yesterday! Must have been posting around the same time.

My pain is strange. Burns when I have a bm, then continues to irritate all day. I guess an achey feeling is a pretty good description. There was a thread here by Jbl22424 I was reading before I signed up and it described my pain exactly! I'll have to see if I can find it again.

I'm sorry you suffer the same issue. It's a frustrating and painful one for sure!
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Re: New and beyond miserable...

Postby owmybum » 12 Sep 2014, 09:13

I'm sorry to hear you are having so much trouble getting a proper diagnosis. It really does feel like we are banging our heads against a brick wall sometimes doesn't it.
I would consider getting another opinion off of another crs. I have been through at least 3 consultants now... And seen numerous " members of the team" in the last few years, all of whom tell me something different.

I hope you get some answers .... And soon!

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Re: New and beyond miserable...

Postby Ever the Optimist » 12 Sep 2014, 10:50

I totally agree with Sav.........nearly 3 years on, I fall into the category of one of those with the "dull aches, pressure, twinging".......I actually went back to my GP (who is great) to discuss it all this week and asked if I could get another check from a CRS just for some enlightenment!.....The response was "they won't see you unless you are in acute pain". So I got another thorough internal, was advised that everything felt totally normal aside from a couple of small internal piles on my right hand side and possibly scar tissue from the fissure on the left. Basically, there's nothing they can do but told me to go back in 6 months if nothing changes!.....so yes, bang goes the theory that internal piles are painless - rubbish......! There is just not enough being done for us poor bum-sufferers!!.........My GP also advised against any form of further intervention as it can just add to more scar tissue, which can lead to further issues......there just seems no way out! Datura.....I truly hope you find relief sometime soon and someone who can help you as much as possible through all this You are so not alone in your feelings of frustration & misery over this :)
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Re: New and beyond miserable...

Postby Datura » 16 Sep 2014, 01:01

Thank you OMB. Yeah, it does. Sadly I seem to spend a lot of time banging my head on a wall talking to dismissive disinterested professionals who I pay a lot of money to for I'm not sure what reason. I will consider a second opinion if things continue to hurt. Unfortunately where I live is rather lacking in good health care. Most of it involves travel to the city capital which is a few hours away and I have anxiety problems so that makes that a little difficult. Thank you for the support! x


Thanks Ever the Optimist. Ugh, sounds like we are in a similar situation. My GP is generally happy to refer me to people but often seems baffled when I tell him I want a second opinion or that I didn't click with someone. He seems to think professionals are just fantastic and not capable of being dismissive.

How frustrating for you! I can't believe doctors are happy to send patients home to just live with being in pain and not care. Where is the duty of care?!?!

Hmm that's definitely something to consider about the scar tissue and making things worse.

I'm sorry you're right here with me in all this misery :smilyhug: . I guess for now I'll just keep bumbling along and hoping to get the balance right. Always fun with IBS. When I add fibre to my diet I cease to go at all but as soon as I take even half a movicol or half a stool softener I get tummy pains and diarrhea. There seems to be no happy medium with my body!
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Re: New and beyond miserable...

Postby Alyssa » 11 Oct 2014, 15:16

Datura,

I too was suffering from burning pain during bm... I have been diagnosed with pelvic floor dysfunction. I got Botox injected to my pelvic floor muscles and the burning pain with bm has lessened. I still suffer from burning pain with sitting... It's very frustrating when you are the victim of this pain. Some days I give up hope and other days I am ready to fight. I am glad I found this forum because I am not alone suffering from this chronic pain... Wishing you the best
2/14 Fissure developed
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4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
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