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Proctalgia Fugax -- Part III

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Ides
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Posts : 7198
Posted 7/28/2012 3:00 PM (GMT -8)
This is a continuation of the thread, PROCTALGIA FUGAX - PART II. Feel free to continue your discussions on this thread.
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RonCH
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Posted 8/12/2012 3:57 PM (GMT -8)
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.
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ShaunG
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Posted 8/23/2012 2:56 PM (GMT -8)
Quick update: I had the onset of a PF attack this evening, 2 hours after going to bed. Having read the previous thread, I decided to try my asthma pump which is full of salbutamol. My symptoms died down almost immediately and after 5 minutes I was back to normal again. My attacks usually last upwards of 30 minutes of excruciating pain, so I am eternally grateful for this forum and the salbutamol suggestion. I realise that this might just be coincidence, but I'm fairly optimistic about this after tonight.

Seeing as the attacks come few and far between, it might be a month or so until I can test this again, but for those of you suffering, it might be worth asking your doctor for a salbutamol pump that you can keep with you for this. It's a safe product and luckily where I live, doesn't require a prescription at all.

I hope this can help other sufferers out there at some point. I know I wish I'd seen the PF threads on this forum years ago...
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Momandfamily
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Posted 8/25/2012 10:35 AM (GMT -8)
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)

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Hooded_Dreamer
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Joined : Aug 2012
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Posted 8/27/2012 2:50 AM (GMT -8)
Hello!

I can not describe the relief it has brought me, finding this forum! For about five years now (I'm twenty one) I have had the occasional, stabbing, white hot pain in the rectal and genital area - It was always very sudden, 90% percent of the time at night, and lasted for about three hours. During the past couple months though, I have had trouble laying down without having sharp pain in the groin area, so deep that it feels like it's on the bone. Every single night, mind you.

Has anyone else experienced this? Could this be caused by Proctalgia Fugax as well? I had originally thought it was a pinched nerve, but now I just don't know....

I went to the Clinic a couple months back and was given a prescription for 500 mg Naproxen, which I really think helped. It was when the prescription ran out that I suddenly had one of the worst, and longest lasting, episode. I took two liquid Aleve pills (each 220 mg of naproxen) about an hour and a half before the attack, but it didn't seem to touch it!

What really helped was sitting on one of those aluminum water bottle things (I didn't have a tennis ball) - I placed a sock over it and sat down on it...this had been about an hour into the attack, and I would have stood on my head if I thought it would help. While it still hurt on the upper pubic bone, it was a much, much more manageable pain. In the anal area, the pressure really did help! I also took a shot of my inhaler (albuterol), but I don't think that really did anything.

I have IBS, and noticed that I usually have an episode about a week before my period, and if I was constipated a couple days earlier. I wonder if it could be a hormonal thing, like my IBS seems to be (as I can tolerate far less foods around the time of my period).
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jerry10
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Joined : Aug 2012
Posts : 1
Posted 8/28/2012 2:32 PM (GMT -8)
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
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dovh
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Joined : Sep 2012
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Posted 9/6/2012 2:36 PM (GMT -8)
so i started getting these pains too last week was first.i am 32yo male pretty fit, work out and run fairly regularly. try and eat healthy, drink a lot of water. however mine are connected with a sharp pain in my left upper ribage right below my chest! anyone else have this as well? i have yet to receive it lasting more than a few seconds, maybe 5-8but darn is it painful and just comes out of no where.
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Celtic dog
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Posted 10/14/2012 8:08 AM (GMT -8)
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!!

 

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DiMase
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Joined : Oct 2012
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Posted 10/15/2012 4:11 PM (GMT -8)
I can't express enough how happy & relieved I am to have found this forum!! I'm so glad to see I'm not the only one!

Two months ago, while on vacation, I was awaken in the middle of the night with this intense pain - however, I didn't know where it was coming from. The pain was just so bad, I couldn't pinpoint it. It was like horrible cramping... So I ran to the bathroom and the pain became blinding at that point. I thought I was going to black out! I also felt nauseous and my heart was beating so fast- I swear- I literally thought I was dying. After 10 or so minutes, the pain slowly began to subside. I was then overcome with cold sweats. I mean, I was drenched! I went back to bed thinking, am I starting early menopause?! I'm 45. That's what I believed and chalked it up to that.....

...Until last night. In the middle of the night, I was awoken by an UNBEARABLY SHARP PAIN in my rectal area. I'm like, what the hell...?! So I got up and hobbled to the bathroom. Then comes the faint & extreme dizziness, feeling like I'm gonna pass out sensation. I'm still experiencing that excruciating, wanna die feeling in my rectum. I mean, I gave birth naturally (twice!), no drugs. And THAT IS PAIN!! This was very similar!!
I'm on the floor, praying for the pain to go away, as I thought it would soon considering I experienced the same thing just 2 1/2 mos ago.....and finally, after 20 min, it did.
Then comes the cold sweats. I was drenched. And spent.
I go back to bed, telling my sleepy husband what had occurred. Thank goodness he took care of the girls in the morning so I could sleep and recover.
I called my gyno this morning, again thinking it was pre menopause related, only to have her say it wasn't. That I should contact my intern. Instead, I went on line just to SEE if there was anything on what I experienced, and amazingly, I found out it was this proctalgia fugal that others have experienced as well.

I'll still make an appmt w/ my intern, but its refreshing to hear how all of you have dealt with it and that I'm not alone! I will take the suggestions all of you ( I've read parts I & II already!) and I hope it's a long time before I have to use them!

Ugh!!!!
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Tinlou
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Joined : Jun 2010
Posts : 396
Posted 10/16/2012 11:19 AM (GMT -8)
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.
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Krumsmum
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Joined : Oct 2012
Posts : 2
Posted 10/21/2012 11:10 AM (GMT -8)
I am 67 years old and have had off and on PF for 45 years. It began after birth of 2nd child. It is unbelievable how bad the pain can get. I get it during the day as well as night, but mostly during the night. Over the years I have been prescribed creams, suppositories and oral medication. Nothing worked. Had negative colonoscopy. Went to proctologist and Praise God!! He taught me to use my thumb vaginally to massage directly over the area where the cramping occured and like magic it relieved the pain. Usually within a few minutes the pain is gone. Hope this helps some of the ladies out there.
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2morecents
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Posted 10/30/2012 8:32 PM (GMT -8)
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.
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Jackals
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Joined : Nov 2012
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Posted 11/16/2012 7:10 PM (GMT -8)
I have been suffering from Proctalgia Fugax for almost a decade. Since being diagnosed with this condition, I've monitored what triggers the episodes of sharp anal spasms. I've found that caffeine (coffee, soft drinks), stressful periods and processed foods (fast foods, processed sausages like hot dogs, salami, peperoni etc and overly sugary foods) set it off. 90% of the time the pain comes a few minutes after ejaculation or in the middle of the night and lasts anywhere from 5 minutes to an hour. I have had the odd occasion where the pain has come during the day while at work, but this has been rare.

Now, over the years I've found that the pain can be treated with a variety of the above mentioned strategies. Too often I've just rolled up in a ball and 'waited out the pain' in total disbelief that I now have to live my life in this way; for example - enjoying a great meal and the having to suffer for it for the next two nights or being rewarded for great sex with what feels like a knife in my arse.

Over the last month I have found what could be a permanent solution. Over the past few months, the episodes have increased to a point where I could expect to have a proctalgia fugax episode two or three nights per week. I read on one of the forums that MAGNESIUM SUPPLEMENTS could relax the body and the muscle tissue n the body, including the anus....so I thought I'd give it a go. Since taking the Magnesium tablets around 2 hours before bedtime every day, I have not had one single painful experience. I'm still very careful with what I eat, and I try to monitor my stress and how many coffees I have per day, but I feel there is a MAJOR difference with the Magnesium. These supplements have not only erased the chance of all pain, but now I am getting to sleep faster and I'm sleeping longer - feeling more refreshed each morning. I can enjoy having an orgasm without having fear of what might happen next in the back of my mind. And I've even tried fast food and processed food while taking the Magnesium and have found that there is no pain after eating this also.

All in all, in my experience over the last few weeks I personally believe that Magnesium supplementation is the cure for me, and could be the cure for everyone suffering from proctalgia fugax. turn

Post Edited (Jackals) : 11/16/2012 8:15:45 PM (GMT-7)

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Sunshine!
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Posted 12/5/2012 6:53 AM (GMT -8)
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-
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Tinlou
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Joined : Jun 2010
Posts : 396
Posted 12/5/2012 8:35 AM (GMT -8)
I got this god awful pain just the other night but instead of getting it in the middle of the night like it usually does it came right before bed around 10. It was so odd, it just came out of nowhere. I was just relaxing watching tv. got up and moved to another chair and boom it came. I wasn't stressed out or anything and didn't eat anything that day that was different. So weird and i am now more confused than ever.
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freeofpaine
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Joined : Dec 2012
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Posted 12/8/2012 10:51 AM (GMT -8)
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 :)
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antox
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Posted 12/12/2012 10:55 AM (GMT -8)
I also suffer with PF. Its the worst. Ive actually suddenly screamed in public before due to the completely random and sudden pain. I found that if I eat a lot of garlic too close to bedtime, it sets it off. So does ice cream too close to bed time and on one or 2 occasions eggplant also did it. During an attack, my feet get quite swollen and hot too. It sounds soooo odd but hey, thats what happens. Dont know what the connection is. IM 36 year old male. Also have diverticulitis.
Be great ful if anyone has a solution.
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GilG
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Joined : Dec 2012
Posts : 1
Posted 12/21/2012 8:15 PM (GMT -8)
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.
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darkandlight
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Joined : Jan 2013
Posts : 1
Posted 1/22/2013 2:31 PM (GMT -8)
Agree with previous posters. Main two causes:

Stress
Dehydration (wonder whether this also explains those who have suffered whilst running?)

Treatment:

Hot baths
Ibuprofen
Stretching

Will try:

Magnesium

I've also got IBS and Prostatitis. I personally believe that IBS, Prostatitis & PF must be linked.
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Tinlou
Regular Member
Joined : Jun 2010
Posts : 396
Posted 1/29/2013 3:23 PM (GMT -8)
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?
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aja518
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Joined : Feb 2013
Posts : 1
Posted 2/14/2013 11:38 PM (GMT -8)
I am 22, female, and totally freaked out. Two days ago I woke up in the middle of the night, severe pain you know where, sweating, fainted into my bathroom door on my way to the bathroom because I thought I was going to puke, and lay there on the floor until I could stand up again. I have spent the past two days researching and I think I might have proctalgia fugax. I really don't want to experience that again. Any suggestions or things that have worked for you?
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cornfree
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Joined : Feb 2013
Posts : 3
Posted 2/22/2013 3:31 PM (GMT -8)
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.
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redadrian
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Joined : Mar 2013
Posts : 2
Posted 3/1/2013 12:27 PM (GMT -8)
Hello there everyone I'm new on here but amazed to find this forum and a possible name for this pain I have suffered on and off years.

I'm 48 now and I usually suffer when I am out walking so I dont know if it is related to my gait or posture or what causes it.

I dont suffer at night from it at all tho I do have hip pain which stops me lying on my right side for very long and extends over my buttock and down my leg but it probably unrelated.

It is a dull throbbing pain which usually clears up on on its own tho I take Nurofen or massage it which helps but can look odd so would have to be careful where I am.

I also have IBS and asthma so I have a Salbutamol inhaler already, even more excuse to carry it if it helps.

Does this sound right for PF?

I would appreciate any advice on controlling it though most days I am cycling rather than walking as it is easier now tho I did have this pain on my bike on Sunday.

Many thanks :)
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fugax
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Posted 3/6/2013 7:26 PM (GMT -8)
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)

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redadrian
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Joined : Mar 2013
Posts : 2
Posted 3/7/2013 12:17 PM (GMT -8)
Ouch I've never had it nearly that bad tho painful enough and going to the loo and even just straining cleared it up.

Tho being female I dont know about the erectile tissue link tho funnily enough it happens sometimes when I am carrying a rucksack and its loaded and maybe pressing on my lower back region somehow or if I wore tight jeans which I dont do anymore.

Or as I have wallking/posture problems I dont know if the way I walk brings it on, not sure.
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A No-Nonsense Guide To Irritable Bowel Syndrome

A No-Nonsense Guide To Irritable Bowel Syndrome


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