Why Am I Still in Pain?

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Re: Why Am I Still in Pain?

Postby pafen » 08 Oct 2014, 18:29

I wonder if we all have some form of pudendal nerve involvement?
Hemroidectomy, anal abscess, fissure, LIS
Pelvic floor Dysfunction since late 2012
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Re: Why Am I Still in Pain?

Postby Alyssa » 08 Oct 2014, 20:16

I asked that to my pt and doctor too! They both touched the PN nerve and I did not react like PN sufferers do...

My pain is only in the rectum though... No other issues.
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: Why Am I Still in Pain?

Postby Alyssa » 08 Oct 2014, 20:34

"Spasms feel like burning to me. Like a hot poker in the butt. Just terrible! When it's not as bad it ebbs and flows over 30-90 seconds where I'll have a minute pain free and then a minute where my butt is burning and so on. This occurs starting after a Bm, worsening for a few hours, then lightening over a few hours till it's gone. When the pain is the worst, I know my butt is tight because of how it feels"

I feel the same as you... I noticed that when the burning is stronger the anus feels harder to the touch. Today I have less burning sitting pain and the anus feels softer to the touch (externally) totally weird.
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: Why Am I Still in Pain?

Postby pafen » 08 Oct 2014, 22:15

Alyssa,

Yeah mine is rectum only as well. My spasms feel like burning.
Hemroidectomy, anal abscess, fissure, LIS
Pelvic floor Dysfunction since late 2012
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Re: Why Am I Still in Pain?

Postby msimon » 09 Oct 2014, 02:31

Alyssa wrote:" I noticed that when the burning is stronger the anus feels harder to the touch. Today I have less burning sitting pain and the anus feels softer to the touch (externally) totally weird.


That so describes mine too. I really think this is the internal sphincter.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: Why Am I Still in Pain?

Postby Alyssa » 09 Oct 2014, 13:39

Msimon,

This is totally weird; I'm going to start to write this information on my bm diary from now on. Soft anus or hard anus (lol)...
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: Why Am I Still in Pain?

Postby queenofpain » 09 Oct 2014, 14:48

Alyssa, I guess I'm going to look into stretching the muscle. Two of my CRSs said you could do it with a candle, and I didn't reply because it terrifies me. I've often been unsuccessful getting medicine in that area - I'm just too tight. But, now I'm getting desperate, so I want to try on my own (NOT in a doctor's office - too embarrassing!).
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Re: Why Am I Still in Pain?

Postby Alyssa » 09 Oct 2014, 23:58

Have you tried using dilators? My pt suggested them a few months ago but I was terrified to do it on my own but now I am open to doing it. I ordered my dilators from amazon, just waiting for them to arrive to try.

I was afraid to use the wand vaginally at first but now I hAve no problem doing it.
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: Why Am I Still in Pain?

Postby pafen » 11 Oct 2014, 15:24

Why are we still in pain? Well I have seen 4 colorectal surgeons, had 3 colonoscopies just to be sure, many proctoscopes. They all tell me that everything looks normal.


Instead of trying too many things at once, I am trying them one at a time then moving onto the next thing. At the moment I have started up daily physical therapy and will see a pelvic floor physiotherapist on a regular basis. I will give this 6 months at most to work.

Next Tuesday the 14th October I will see my pain specialist as well. See what he recommends. He told me that he never used to see a lot of chronic pelvic pain patients except for the the last few years. He sees quite a lot now he said. I am prepared to try what he thinks if the physical therapy doesn't work. Possibility of an injection into my piriformis muscle, Botox into pelvic floor, lastly sacral nerve stimulator.

Alyssa,

He has me on 25mg of endep at night to help with the burning. I also was offered lyrica at 75mg twice a day. I don't really like the side effects of this medication so I take it during the day only when I need it when I am active. For breakthrough pain when it's really severe burning I have 5mg oxycodone tablets.
Hemroidectomy, anal abscess, fissure, LIS
Pelvic floor Dysfunction since late 2012
pafen
Proctosphincteranalogist
 
Posts: 130
Topics: 8
Joined: 18 Aug 2014, 04:30
Location: Queensland Australia
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Re: Why Am I Still in Pain?

Postby Alyssa » 11 Oct 2014, 15:51

I ask myself the same question... I even ask god to give me the answers to this mystery... I have not had any tests done (manometry, MRI)... Perhaps they can reveal some information for me. The issue for me is that there are days that the burning pain is stronger and other days that it is milder; some days my are completely painless and others mild stings, scraping the wall feeling. It's frustrating!!!!
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
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
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Gender: Female


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