Mystery Pain, MRI shows nothing

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Mystery Pain, MRI shows nothing

Postby sore_and_confused » 17 Jan 2014, 11:41

Hello All,

I'm desperately seeking alternative diagnoses. For more than two years my doctors have assumed I have had an anal fissure and have been treating me accordingly. I tried nitro and diltiazem ointments, 3 rounds of botox with sigmoidoscopies, and finally LIS, all to no avail. Most recently, I got an MRI and my test results say "No fissure identified." Is that proof?

My symptoms:

I have some pain with/after bowels, but the thing that seems most unique is the pain/discomfort I have after sitting down in any chair other than a recliner. If I never sat in chairs I would say 80% of my pain would be gone. Sitting in a chair doesn't instantly cause acute pain, but the discomfort develops steadily the longer I sit, and it doesn't go away quickly after I stand. In fact sometimes I don't notice the discomfort the sitting created until later. The pain from sitting stays with me until I've had a hot bath or gone to sleep.

Any advice you can give will be greatly appreciated.
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Re: Mystery Pain, MRI shows nothing

Postby Now66 » 18 Jan 2014, 09:21

First question, if no fissure what did they repair with the LIS?

It might also help to know if your are male or female.

Someone on the forum might also recommend a sympathetic doc but we would need to know the country/area where you reside.
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Re: Mystery Pain, MRI shows nothing

Postby Savaici » 18 Jan 2014, 19:17

Welcome to our support forum, sore and confused.

"No fissure identified" suggests to me that it is healed, and this is the reason that it is no longer visible, especially after surgery.

It is not uncommon, sadly, to have chronic pain after the fissure is healed. I did not have surgery but have had pain after the fissure healed, which is only gradually improving. I had pain from my coccyx which has also only now improved. I also have difficulty sitting, though a little different from your description. I am able to sit in the mornings in my car, but after having a BM, have difficulty the rest of the day.

I have done a lot of research into the pain - Pudendal Neuralgia being one thing I was convinced myself was my problem - and spent a lot of money on specialists. In the end though, I changed my diet, used a Sitz bath on a regular basis every day, drink lots of water, found just the right amount of fibre to take, stick to a fairly bland diet with fruit and veg, take milk of magnesia to help things along, and stopped worrying about it all! Doctors don't always know it all, especially with "mystery" pain.

I still have problems, mostly with diverticulosis, but I accept that things are never going to be perfect for me.

Hope someone might come along with some more advice.

Sav
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Re: Mystery Pain, MRI shows nothing

Postby sore_and_confused » 19 Jan 2014, 08:27

Thanks for your replies. I'm a man living in Philadelphia. I only got my MRI 6 or 8 weeks after my LIS.

I should mention that I'm disciplined about fiber and miralax so my stools are good. I developed a terrible sensitivity to nitro and diltiaziem ointments so I can't continue with them. After my ineffective surgery, but before the MRI that couldn't identify a fissure, my surgeon was recommending that he put me under to take another look and probably give me botox. Is there any point (in looking or botoxing?) when there is no fissure identifiable? I wonder if my insurance will even cover it.

Philadelphia doctor recommendations are appreciated.
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Re: Mystery Pain, MRI shows nothing

Postby nesie1963 » 22 Jan 2014, 05:42

I had LIS surgery in March 2012 and still have aching pain after bm. The strange thing is along with the pain in the butt, I also have pain in the toes of my left foot. Anyone else had pain elsewhere, like in their toes? My husband thinks I'm crazy. The only thing that helps the pain is sitting on a heating pad.
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Re: Mystery Pain, MRI shows nothing

Postby ButtQueen » 02 Feb 2014, 05:43

Hi everyone,

The thing is, that our anus and sphincter muscle is LOADED with pain nerves. This is why something like even a small paper cut on there can cause excruciating pain that we are all aware of. For me, the pain radiates to my buttocks and my inner thighs. So this aching pain after BM, even though that the fissure has healed takes quite a lot of time to resolve. The nerve damage in there for some people can take years to get back to normal.

Though, in my opinion, as long as the fissure is healed, the pain should not cause much psychological distress. It would ultimately resolve itself. Nesie, you shouldn't be having that aching pain after two full years. Have you checked up with your GP/CRS again?
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Re: Mystery Pain, MRI shows nothing

Postby Alyssa » 24 May 2014, 01:54

I am also experiencing pain after my fissure is healed with nifedipine after suffering with the fissure just two months; doctors don't have a clue to why I continue to be in pain; they have suggested that I see a pelvic floor physical therapist to see of it helps. This forum has helped me because I know that I am not the only one that is experiencing this, I just wish all doctors were knowledgeable so I don't have to continue to ask for 2nd or 3rd opinions!
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
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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Re: Mystery Pain, MRI shows nothing

Postby Key » 25 Jun 2014, 16:16

Alyssa, just caught this post. What you're experiencing is ok and will go away. I had the same thing. In fact, I went to doctors thinking I still had a fissure and unknowingly, it had healed and left behind a lot of other kinds of discomfort because of the way I babied the fissure-- other muscles (particularly the pelvic floor ones) were worked overtime. Just ignore the discomfort if you can or go to a pelvic specialist for massage to help rebalance everything. It will all go away as the body gets back into a 'normal use' mode.
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Re: Mystery Pain, MRI shows nothing

Postby Alyssa » 25 Jun 2014, 16:55

Key,

The issue is that I have good and bad days and sometimes there is bleeding when I wipe; the dull achy pain (burning worst when sitting for a long period of time, irritation, papercut feeling around my anus) has taken a toll on me.

Sometimes I feel I am having a good week, day and then the pain goes up to 5/ 6 (hot burning) like telling me don't forget about me! I saw another CRS yesterday who suggested that I try Botox but I am scared to try it. I have been to multiple doctors and have received different diagnoses and advice and it has left me confused. I have been to a physical therapist who has told me I have pelvic floor dysfunction, others have suggested that I may have developed an allergic reaction to something I used on my bum. Sometimes, I tell myself it is all in my head, there is nothing wrong but then it flares up...
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
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
Alyssa
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Re: Mystery Pain, MRI shows nothing

Postby Alyssa » 25 Jun 2014, 16:59

Its been two months since the fissure healed... and I had it for two months, how long does it need to repair itself? "Normal use mode" I am nervous every time I use the bathroom... I just cant relax no matter how hard I try.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
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
Alyssa
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Posts: 735
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Joined: 29 Apr 2014, 11:24
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