Proctalgia Fugax -- Part III

I've suffered from Proctalgia Fugax for decades. I've been fortunate to have never passed out but came close in the past.

A couple things have worked for me, that I more or less stumbled into and more recently I may have found what will stop an attack.

First, I found that when I was awakened from sleep with the pain I rolled onto my back and pulled my knees up a foot or so. That seemed to relieve the pressure and the attack would subside most of the time. If I wasn't where I could lay down, I was in trouble.

Second, I started going to a chiropractor for neck and lower back pain. Treatments have helped those conditions but also seemed to reduce the frequency and intensity of the attacks.

Does anyone else have lower back issues along with P.F.?

And third, the most exciting for me, is yet to be confirmed but I want to get it out there. I have to have nitro glycerin tablets handy for reasons unrelated to my heart. A gastroenterology nurse friend of mine suggested that I try one ( they go under the tongue if you aren't familiar ) next time I had an attack.

Yesterday was the first time in a long time, a couple months maybe, that I began to have a severe attack of P.F. I put a pill under my tongue and by the time it had desolved, just a minute or two, the attack stopped cold.

Need to do it again before I can be reasonably sure but I wanted to get this out there.

Check with your doctor! Please let me know if anyone else has experienced this.

It was such a relief to find this thread! I was in the midst of excruciating rectum pain yesterday late afternoon, a sudden "attack", and I had no idea what was happening to me when I found your testimonies. Thank you everyone for sharing! Once I had read your posts I grabbed a heating pad, started slowly pacing, calmed myself to stop crying and to breath through the pain like I did for child labour. In about 30 minutes it was over. I and my husband were shocked to find in a few more minutes I was more or less okay.

Here is my story. Six months ago I had smaller version of a PF attack but I did not know that then so I thought I had brought on internal hemorrhoids. Given my mother had colon cancer I had already had two prescreening colonoscopies so my Dr scheduled me a third. Though my first two were completely normal this 3rd one did indeed show a few small IH. I was already on a high fibre, high water diet so I continued with that.

However I kept feeling annoying waves of pressure in my rectum for months after. My family Dr thought it was likely just the IH but had no idea how to help me as the Proctosedyl was not helping and said it should pass. Finally on a vacation I went to an ER for pain management and was prescribed Diltiazem 2% compound in a petro jelly (this is heart pressure pills ground down to a powder). Though used for anal fissures the ER Dr had had good success with patients with symptons like mine. It worked really well to reduce the pressure in the rectum so I could function more comfortably. Within 2 weeks the nagging rectal pressure was completely gone. I also applied it after my recent full blown PF attack (next time I have a PF attack, if there is one, I will apply it asap during).

Internet research on my own as well as assistance from a massage therapist has led me to think I suffer from Levator Ani Syndrome. Seems to me that PF fits in with LAS. I would encourage if you suffer PF to try massage of the LA muscles (the most current research on LAS suggests internal rectum trigger point massage as the best prevention, a medical award winning device has been designed to do this at home yourself, as the majority of MT won't do internal massage, understandably). I get a trigger point lower back and external bum massage every 2-3 weeks.

I am going to ask my Dr for puffer next week in case I have any more PF attacks, as I cannot imagine what I would do if one came about while I was working.

Again what a relief to find a name to something so suddenly painful without a long drawn out visit and testing at the ER.

Post Edited (Momandfamily) : 8/25/2012 1:22:24 PM (GMT-6)

Hello,

I have had this condition for about 20 years. I have received very little from the doctors I have reported it too. The only thing I can compare it too is the pain my wife went through given birth without any medication. It can create anxiety about when it will occur as it is so incapacitating, and i don't have a clear trigger.

I believe that diet and stress may make it more likely to occur, but it appears directly related to dehydration.

What works for me.......

as soon as I feel it coming on (anal aura?)- resist the urge to defecate- seems to make it worse

drink as much water as I can- quickly- easily drinking 48 ounces or more.

sit on floor- hard service- applying direct pressure- rocking if needed - drink more water if needed

read or watch TV to distract self

deep regular breaths maintaining consistent rhythm for inhalations and exhalations

-significantly decreases duration and intensity of pain-water is the key ..... though it still sucks

Finding this forum is a life saver. I've had PF for probably almost 20yrs now ( I'm 42) and similar to many other sufferers my attacks mostly come at night. It's been so hard explaining to my husband just what they are like. For me, it's like no other pain I've every suffered ( and that included child birth).

Generally I find that it will subside after about 20-30mins after taking ibuprofen and sitting doubled up on the loo waiting for something to happen ( that never actually happens!). I like the suggestions I've read earlier about the hard tennis ball onthe toliet seat. I'm definitely going to try that and if nothing else at least it'll be a conversational point when guests  come to stay ( not that they'll see me using the ball..I meant that the tennis ball will be remaining on display in the bathroom!)

I've not yet been to the doctor about it but i intend to go soon after a bout of PF today. It's really unusual for me to get it during the day but today I was running in a half marathon. I was with my hubby and we were aiming for 1.55 hr time ish!

11.5 miles into the run and it struck with vengeance! I couldn't believe it. Bang went my chance of a sub 2 hr time. I had to stop and walk for a good few mins and catch my breathe...I was gutted!!

 

I originally thought that this was directly related to my menstrual cycle but since guys are getting this too I am pretty sure I am wrong. With that said, does anyone have any idea why this mainly happens at night? I have had it during the day as well but not even half as much as I have in the middle of the night.

I am a 63 year old male and I have suffered with PF for 23 years, occur about 8 to 10 times a year, usually at night (2 to 4 am) but occasionally during the day. Day time episodes are usually lighter, but night time episodes have frequently resulted in cold sweats and loss of consciousness. Attacks typically last about an hour if I dont pass out sooner or take my " Remedy". My attacks are pretty surely stress related.

Be careful with this - but it works for me. A single glass of wine or shot of whiskey will stop my attacks in minutes. Be careful; because alcohol dehydrates I would guess it could make the problem worse if you "Over Indulge"; but in a moderate dose it is a good CNS depressant and muscel relaxer.

"Over Indulging" is actually not a temptation for me waking up at 2 am in excruciating pain and cold sweat. The last thing I "Want" when I am in the middle of one of these things is a shot of alcohol, I have to take it like unsavory medicine. I stumbled on to this remedy when I read that alcohol sometimes helps women with menstrual cramps (is it true?) and decided maybe it would help me with my problem. Immediate success.

Since I am not a heavy drinker I don't know if this would help if the spasm was brought on by alcohol induced dehydration. Maybe not. My problem has always been stress related, and for my situation, it works quickly and effectively.

So sorry to see so many of you here. I had another attack last night for about 30 minutes. This has been going on for about 20 years now averaging 4 to 10 episodes a year. Sleeping, walking, in the middle of a tennis match, teaching my class. This pain does not care what I am doing. It comes when ever it darn wants to. And....it lasts how ever long it wants...I just breathe through it (well, I try).

When I finally asked my doctor about this pain he took my hand and said "I am so sorry. There is only 5 percent of the population that has this and there is no explanation and no treatment."
Good luck with that! (he didn't say that...I did)

So...Thank you all for posting. It looks like more than 5% are on this message board.
So far I have read that; Magnesium & potassium are good supplements and that Ventolin (Inhaler) and Symax (antispasmodic/sublingual) are what has worked for a few.

I have often thought that this condition was related to my back. Not that my back is real bad but it seems that every time I wear shoes with a 1 1/2" heal, for most of the day, I get the pain. And that's what I wore yesterday.

I am going to do more research and find what really works for this....I do NOT want to have it again.

-SunShine-

Hallo all the way from Denmark :) stop eating meat it seems to do the trick, that helps me, i still eating eggs without any problems :)
you kan also put a finger up in your anus an massage the rectum Muscle.

PEACE TO ALL :)

Thanks to all. Not alone any more.

same symptoms as most although i collaps due to the pain and low blood pressure from shock i guess. The numbness is severe and freightening.

will try the Mg and potasium treatements. Doc has been of little help.

Does anyone have a theory as to why this happens mainly at night for many of us? I have had it happen only a few times during the day but mostly out of a sleep. Any ideas?

Hello, I am 57, female and have had episodes of this proctalgia fugax pain as long as I can remember. I have found the cause! In my case it is an allergy to corn and all corn products including corn syrup which is used to sweeten soft drinks. The pain comes on 3 days after eating a corn product so it's very difficult connecting the pain with the food. The pain is more severe after eating cornflour than after eating fresh corn. If I eat lots of corn I also get symptoms typical of an ulcerative colitis sufferer. The pain has often come on after stress or during a brisk walk but it most often happens at night. It typically lasts a few minutes. However - it NEVER happens if my diet is free of all corn products. I can't even eat tinned soup as it is thickened with maize.
Typically the pain crescendos up until it is unbearable, then I feel nauseated and faint. I feel most relief sitting on the toilet so I can fully relax the anal muscles. It usually lasts a few minutes - but those few minutes are pure agony. Only fellow sufferers will understand.
Hope this helps someone.

Here is your definitive answer regarding Proctalgia Fugax.
I have suffered it for more than 50 years.
Ever since puberty. Does this tell you something?
And most doctors will not discuss it or somehow imply they've never heard of it. Actually, many probably haven't. So much for the medical profession.

When I was 15 or so, we lived in a very drafty and cold house. You needed those blankets at night. And for a schoolboy, it was a real ***** getting up, getting dressed and going off to school in the winter cold.
I began to experience these pains and/or urge to have a dump, in the middle of the night. And as folks here already understand, I would go sit on the john for an hour or two. Oh yeah- with an erection. But I didn't really feel like doing much about this condition. I just wanted the pain to go away. And/or have a dump.
As an impressionable 15 year old, I began to think that.. OMG- I might have cancer (A few of my uncles and aunts had already died of this).
Two hours of suffering, then an hour of sleep, and then soon it was time to get up and go to school. No wonder I always slept on the warm schoolbus.

Well, cut forward 15 years or so- I had just been hired at some company, and got a medical exam. It was pretty complete. For the first time in my life, and I was still in my twenties, I got a prostate exam.
Afterwards I told the doc about these periodic pains. He recognized the condition immediately and told me not to worry. And he then gave the Latin name. I forget what it was, but I bet it was "proctalgia fugax".
He even said that Hippocrates had described the condition more than 2000 years ago.
Here's the kicker: This job was with a tobacco company! That doc knew his stuff. Presumably tobacco companies, with all their money, only hired the best lawyers, AND doctors.

So cut forward another 5 - 35 years. Invariably, whether in bed alone, or with some wife or girlfriend, I would experience the pain, usually when the bed covers had been pulled off of me. (women are like that)
A few times, when staggering into the bathroom and then sitting on the toilet, the pain became SO INTENSE, that I actually fainted, and woke up somewhat later on the bathroom floor.
When I would finally crawl back into bed, tired and exhausted, the woman would ask "Huh? Where were you?" and I'd mumble something like "oh.. just reading in the bathroom. You know- insomnia?"
Eventually I would tell the wife or girlfriend about these peculiar pains. They sometimes thought I was hypochondriac.

The last time I had such an extreme attack was about 8 years ago.
I fainted on the toilet, and when I woke up on the floor, no woman was around. Only my faithful dog was patiently waiting for me on the bed.
And now the dog is dead. ;-) Of old age, of course.
As far as I know, all ex-wives and girlfriends are still alive. Life is not fair.

Almost always during these attacks, I WAS COLD. COLD! It was as though the blood had drained out of my body. Does this tell you something?
I would occasionally take to sitting on a radiator, or our wood stove, being careful not to get burned. But I did not care about burning my ass- , The PF was easily worse than any bum-searing.

Now. I'm 71 and have very few attacks of PF any more. In my estimation it is intimately linked to sexual "tumescence" which I obviously do not have much of at this age.

My uneducated guess is that there is some sort of erectile tissue in the lower intestine, and when it is engorged, it... ah, hurts.
And the rest of the body becomes very very cold, due to lack of blood.

What do you think? Do your experiences vary?
Any MD here? Supply me with a script for some testosterone (patch or cream) and I'll work with you to prove my theory. ;-)

ADDENDUM: I have never "used" Viagra - no wife or girlfriend in sight these days - but I wonder if this stuff would induce a episode of PF. An interesting experiment: Take blue pill, go to bed, and make sure it's cold and my feet are uncovered... No, no.. I don't wish to try. Unless some med student (preferably female) wishes to pay me.

Post Edited (fugax) : 3/6/2013 9:54:48 PM (GMT-7)