3 years post-fissure: permanent pain but no fissure?

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3 years post-fissure: permanent pain but no fissure?

Postby volans » 19 Jan 2018, 03:55

I'll make my backstory as short as possible:

- 3 years ago have a fissure from a hard BM
- typical excruciating pain passing stools, plus difficulty sitting, standing, or being in any position basically.
- colonoscopy confirms a visible fissure several months later
- try non-invasive measures to naturally heal fissure (sitz bath, nitrol cream, etc.)
- 3 months later: CRS anoscope shows fissure has healed
- still discomfort having bowel movements (though better), permanent pain getting worse. can't sit or stand for any extended period of time.
- another CRS does a scope: same results, no fissure.
- see urologist to rule out prostatitis: ruled out by semen analysis and 4 weeks of antibiotics
- see ANOTHER CRS for a scope: at this point they tell me no more CRS referrals and there's nothing wrong with me.
- get x-ray: no issues
- see pelvic floor physiotherapist: 9 sessions later, no results, if not a bit worse.
- chronic pain doctor suggests an MRN: shows no sign of pudendal nerve entrapment
- doctor gives me a nerve block because he can't think of anything else to do: no results
- doctor gives me ANOTHER nerve block: no results
- referred to another pelvic floor physiotherapist
- 4 sessions in and the pain is getting worse

This is where I am now. While it definitely seems like a fissure was the root cause of my pain, it has spread to so many places I can't help but still suspect a nerve may be involved or something beyond just a fissure. I have most of my pain in the sphincter/rectal area generally. But I also have lower back pain, scrotum/testicular pain, penile pain, and i've lost my sex drive by ~80%.
I really feel like something is wrong with my sphincter. It feels like I have no control over it, not in terms of incontinence, but perhaps too-much continence. Every sphincter has a normal resting state and it feels like it's paralyzed in that state permanently. When I need to go to the bathroom, my sphincter muscle doesn't get the signal to loosen and it takes a long time for anything to happen. It's even difficult to pass gas. It's like the proper signals are not getting sent from brain to sphincter, or some scar tissue is preventing those signals from opening the sphincter. And perhaps most notable is when I have an orgasm and my sphincter muscle contracts, I get this AWFUL rectal pain like a nerve is getting squeezed, and the pain shoots through the penis.
At this point two things I haven't tried yet are botox and biofeedback. For having seen 2 pelvic physiotherapists, i'm surprised the topic of biofeedback was never even mentioned. Aren't they the ones who do that sort of thing?
Just thought i'd vent and see if anyone has some ideas. I'm pretty confident there is not a fissure because i haven't seen a drop of blood in 2 years at this point, though i do get rectal pain even with soft stools. It feels like a tear or something serious is going on underneath the surface of the skin. Or that my sphincter has been sewn too tightly and it never fully opens. When you fasten your tie too tightly around your neck, that's how my sphincter feels 24/7.
I feel hopeless. And my chronic pain doctor is at the point where he's just recommending me pain meds that barely make a dent in my pain. For the last 3 years i've been bed ridden. When you can't sit for longer than 30 minutes or stand for longer than an hour, it really limits living any normal lifestyle. This problem, whatever it is, has taken over my whole life.
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Re: 3 years post-fissure: permanent pain but no fissure?

Postby Mypoorbutt » 19 Jan 2018, 10:51

Have you had the resting pressure test, as this would at least tell you and your doctors wether your IS tone is normal. I had a colonoscopy and and 2 CRS’s totally miss my fissure and my last CRS managed to see it and said it was the worst he had seen in 22 years....how the others missed it is beyond me.
Could you get them to give you Botox even if they don’t see a fissure as Botox really did help me...I had major spasms level 10 rolling the floor screaming spasms and Botox stopped those. It also stopped the spasms starting when I had sex, I’m female but reaching an orgasm would set of full scale sphincter spasms that were just as bad as after a BM.
I really hope you find something that works for you because whatever it’s caused by no one should have to suffer the agony of sphincter spasms
Good luck
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Re: 3 years post-fissure: permanent pain but no fissure?

Postby volans » 19 Jan 2018, 13:47

Mypoorbutt wrote:Have you had the resting pressure test, as this would at least tell you and your doctors wether your IS tone is normal.


Is a resting pressure test done by a CRS or pelvic physiotherapist?
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Re: 3 years post-fissure: permanent pain but no fissure?

Postby Mypoorbutt » 19 Jan 2018, 14:20

It’s usually done by a CRS I’m not sure whether a pelvic physiotherapist would be able to do it, it’s called an anal manamotery test.
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Spanking The Monkey...

Postby OttawaMarc1234 » 19 Jan 2018, 16:37

...gives me jolts too. Told the doc..says its probally sore nerve from this weeks biopsy. No results yet. Still suffering with false poos and burning spasms.
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Re: 3 years post-fissure: permanent pain but no fissure?

Postby Deleted User 7033 » 04 Mar 2018, 17:52

Hi, try 100% pure essential Pine Oil or 100% pure gum terpentine.
This is the best remedy you'll ever use. Do the research look into it. It works and fast.
Taken in the morning on sugar cubes. 5ml per large cube. Up to 15ml but do not overdose.
Start low 5ml or 10 ml
Its good, no pain.
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