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Hello

Postby msimon » 08 Aug 2014, 20:10

Hi all. I have been lingering on the board here for a few days and decided to join since you all seem so kind and understanding. I could really use some support in dealing with this pain in the tush.

I will try to keep it short but it's complicated so..here we go. I have had IBS and pelvic floor dysfunction much of my adult life but I managed without ever suffering from more than hemmies. Had a hemorrhoid surgery many years back (that was hell) and a few banded since. Never thought I would ever have ongoing pain like this in my backside. It's even worse than the burn I used to get from pelvic floor muscle spasms (and that was bad), which I have been treating with botox injections for 6 years now.

Anyway, my muscles back there were starting to tighten up and I was coming due for another round of botox but for some reason my Doctor declined my request. At this time I went in for a routine banding procedure and warned the Doctor to be very careful as I tear very easily (ironically, I never tore before getting botox injections but since then I have from time to time during even soft BMs but they always healed up within a week) but alas he tore me. That was December 2014 and I have had it since. I got a botox injection into the internal anal spincter (25 units, he wanted to do 50 but I asked for less as I have a weak pelvic floor from many years of botox injections) shortly after as I could not bear the pain. Shortly after, I was having urgent BMs at any time of the day. Could no longer leave my house as I felt like my bottom was going to fall out and needed to stay near the toilet and bathtub. The botox helped with the pain and the fissure healed some but the part that is not visable from the outside persists. I had a second round of botox as I felt it was wearing off in March (this time only 12.5 units) and the urgency returned not as bad and some more pain relief came. Things were feeling like they may be healed back there but then I couldn't get in to see the doc soon enough and I retore and was having urgent loose spastic BMs throughout the day again. I finally found another doc that would treat my pelvic floor with botox, thinking that if I could get the muscles to relax during a BM I could heal. Well, she got the wrong place and it made things so much worse. I now have a second fissure and can hardly have a BM. I wind up with very solid and wide BMs (for me) and have to take so much stool softener/laxatives I am doubled over in pain much of the day, between running to the bathroom. It seems to be the only way to go. I cannot sleep much (this is badly affecting my IBS) as I have to wake up and have a BM very early and often just laying down and relaxing gives me this awful urge to go but I can't move any muscles to do anything (including pass gas). I don't know if this is due to spasm or if my pelvic floor is super messed up. This has me so beaten down I have considered committing suicide. I just don't see how this is possible going to get better. Everything I try seems to make me worse and my anxiety about it all is killing me and my marriage. Anyway, that feels better. Thanks for listening :)
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
msimon
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Re: Hello

Postby jlm1 » 08 Aug 2014, 21:29

Hey there, I'm so sorry you are dealing with all this. Sounds like
You have had a rough road. I wish I could offer some advice
But I have none. I also have an anal fissure, had Botox
2 weeks ago but haven't felt any significant change.
I'm seeing my CRS Monday to talk about surgery Thursday, which
I am terrified of. I'm also getting a second opinion on
Tuesday from a doctor at Columbia Presbyterian who evidently
does some new fissure procedure that does not involve cutting
The muscle.
Anyway, I've been laying in bed crying for several
Hours now, asking god why this happened. My
Partner is wonderful but it's so hard on all of us. And
We have an 18 month old that I can barely care for.
I totally relate to your feelings. I just
Want relief..... Hang in there. I have to believe
That there must be a solution for us all.
fissure May 2014
nitro, diltiazem
botox July
fistula surgery, piece of skin tag removed Oct
fissure declared healed Dec
currently have burning/pain-told it is nerve pain
physical therapy, sitz baths, valium suppositories
hoping I am healing
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Re: Hello

Postby mmklinemm » 08 Aug 2014, 23:09

I'm so sorry that you're both feeling so low. Please just know that you're not alone and that there are a lot of people hoping for the best for you. I have been through some very hard times in my life. But nothing has killed my spirit as much as this ordeal. When I have the dark thoughts, I have to think of my kids and family and remind myself that at least this isn't terminal. Although, sometimes I think I wouldn't mind a cancer diagnosis. At least then there would be a clear cut plan of action, or maybe an excuse for a colostomy. :)

msimon - have you ever seen a pelvic floor physical therapist? I had to after my hysterectomy. Maybe they could help you regain strength in that area?

I'm wishing y'all all the best and hopefully tomorrow will be a better day. Sending hugs!!
Status: LIS 20 Oct 2014, 2nd LIS 05 March 2018.
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Re: Hello

Postby Alyssa » 10 Aug 2014, 19:10

"It's even worse than the burn I used to get from pelvic floor muscle spasms (and that was bad), which I have been treating with botox injections for 6 years now."

msimon,
What symptoms did you have that led to a diagnosis of Pelvic Floor Dysfunction? I too have been diagnosed with this but I have never had chronic pain in the rear (or pelvic area) until I got my fissure 6 months ago (well I had hemorrhoids during my 1st pregnancy 5 years ago then had them removed). My fissure healed within a few months but I continue to have pain during BM (stinging, burning) and lingering dull pain afterwards. I've been to several doctors since I continue to be in pain, and they don't see an active fissure; finally last week the chronic pain specialist said that my pelvic floor muscles were so tight that they could be causing little retears that have not been visible upon examination, I knew that there was something not right about the doctors diagnosis and this last doctor basically pinpointed what I feel has been going on for the last couple of months.

My issue now is that (I feel as though) I am only being treated as having a Pelvic Floor Dysfunction... the doctor stated that if the pain continues I would just have to go back to get more Botox. My concern is that I will have to use botox for the rest of life in order to not have any pain...

I am scheduled to have Botox on September 5....
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: Hello

Postby msimon » 11 Aug 2014, 21:42

My pelvic floor dysfunction began with a hemorrhoidectomy. The post-defecation burning never really ended after the surgery (although it wasn't quite that bad) and I began to have a deep ache in there like a golf ball in the butt and it would move from left to right. Your case sounds very similar. I think the nerves back there have memory for trauma. Where are you supposed to get the botox? In the sphincter or pelvic floor?
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
msimon
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Re: Hello

Postby Alyssa » 11 Aug 2014, 23:47

Pelvic floor...
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: Hello

Postby Alyssa » 11 Aug 2014, 23:49

Has the Botox helped you with the pain? If you stop the Botox, does the pain come back?
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
Location: San Jose, CA
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Re: Hello

Postby msimon » 12 Aug 2014, 00:28

It really made a difference for me initially but then I started to have problems with my sphincter getting tight and fissures (although they always healed right up in days-until the Dr. tore me in a procedure). I kept having to get them over 6 years now but each time things come back much less tight. I did find though that weakening the pelvic floor had a huge effect on the rest of my body. I had some back and hip pain that I think resulted so I had to work on strengthening those areas. I was probably deconditioned from the chronic pain by the time I started that treatment though. I was doing alright until the fissure. Now everything is a mess :(
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
msimon
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Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
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Gender: Female

Re: Hello

Postby Alyssa » 12 Aug 2014, 00:34

Wow... I'm sorry that you're dealing with all this on top of the pelvic floor dysfunction. I can't believe a little fissure is causing me all this grief too although mine is "healed".
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
Has thanked: 136 times
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Gender: Female

Re: Hello

Postby Alyssa » 12 Aug 2014, 00:40

How long did you suffer from it (pelvic floor dysfunction) until you got help?
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
VIP
 
Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
Been thanked: 41 times
Gender: Female


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