Proctalgia Fugax

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I have had this problem since my late teens or early 20's. As I get older (now 56) this pain is coming much more frequently.

The pain generally comes when I am sitting or in bed, which is fortunate since the pain is so severe it is very difficult to do anything until the pain subsides. Each episode lasts 5 minutes or so (never actually timed them)

Since my early 20's I have brought this up to my Dr. and have been fully dismissed. Over the alst 10 years or so I never bother mentioning it when I change Dr's because I have not expected an identification.

While watching the Dr. Oz show on TV this morning this was brought up during a question period. This was the first time I heard of others having this and an identifying name for it. I now am able to do research on the internet and decide on further action.

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  • Edited

    those are my symptoms EXACTLY. and after years of fighting it i have had to reluctantly admit it is chronic and i will have to live with it. having passed out a few times with it, it is rather scary though. i wonder if dehydration may have a role to play, or a reduction in mineral levels - it is a muscle spasm like cramp after all. am going to ask my gp for either super strong painkillers or an inhaler to relax the spasms as some have had success with that
  • Edited

    My pain started about about 18 years ago. Fullness in the rectum and pain when sitting. I had all the standard tests...Diagnosis was anal fissure. Two operations later, loads of anal exams, MRI scan, camera up the butt, drugs, lotions, potions, the pain is worse than ever...constant. My dr always said it was Proctalgia Fugax, a loose and undefined term. After surfing the net (on the recommendation of the pain doctor ) I have come to the conclusion that I have Levator Ani syndrome. I have read all there is, and have come to the conclusion that there is no treatment at all. It is crap thinking that I am going to have this pain for the rest of my life...at least it is not life threatening
    • Posted

      Hi, I have just come across your post while looking for some answeres. I hope you dont mind but I was wondering if you had any tips on levator ani syndrome. I have had it for over a year now. I do a lot of different things which do help but today I seem to of gone back to squqre one with pain and have spent the day on a heat pad. Would you please let me know if you can help in any way.

      Thank you in advance.

    • Posted

      I have been suffering from PF from last 7-8 years, it comes once or twice in six months, usually happens during sleep and wakes me up.

      I have discovered that the following exercise always works for me and relieves my pain in about 4-5mins.

      I lay down on my back and move my legs in the air like I'm cycling in the air... It always works for me.

      If I'm sleeping alone I do it on my bed itself, or if my partner is sleeping next to me then I do it on the floor to avoid disturbing partner's sleep.

      I hope it helps you too.

      Regards,

      Prayer

    • Posted

      Wish I read this minutes ago! I would have tried that! I am so glad I found this site! There is an actual name to the pain that I have been getting since my teens! This last episode lasted over 20 minutes which is the longest ever, so I decided to do some research since I was practically paralyzed with pain. All my G.I. doctors just told me I have IBS all these years and looked at me strange when I explained this very distinct pain (not the normal IBS pain I had almost daily). Thank you all for sharing!
    • Posted

      Hi

      Please search this forum for discussions on the punch technique. It totally solved the problem for me so hopefully it will for you as well. I've been using it for well over 10 years to very quickly and immediately stop an attack.

      Jim

    • Posted

      Jim, thank you so much for sharing this technique!!!!!

      I've been writhing in pain for 2 hours just now and decided to Google PF relief, so here I am.... Actually I started with the "pinch the skin between the nose and upper lip" technique that was mentioned here, and that worked too! But I found when I stop pinching the pain came back. So I punched, and now I'm fine! A miracle!

      Thank you all!!!! I can sleep again!!!!

      (My attacks happen maybe twice a year, last an hour or two, and often come on after I've had an episode of diarrhea. Forgive the image! Anyway I also get pain "in the front" like Jo's daughter, just because the spasms are so painful that I can feel a dull ache in my abdomen. Boy I hope Jo tried the punch technique! It's really not a painful punch, more of a firm connection.)

      Off to sleep again! smile

    • Posted

      Most recently, after becoming severely dehydrated I also became severely constipated. After an agonizing 4 days I slipped on a finger stall and physically removed a very hard stool from the rectum.

      Yes it hurt, hurt, and did I say hurt. A couple more over the night hours and then my doctor said get Microlax and give yourself an aenema. I held the substance for 15-20 minutes and with some effort expelled an enormous stool

      followed by many others over a full 24 hours at about two hourly events. In the initial finger events I discovered that the area closest to the tail bone was highly sensitive and initiated the same pain as the proctalgia.Researching I discovered the truth.

      It is a severe nerve spasm of the internal sphincter muscle(s). Hence it can be stopped by activating nerves elsewhere. Also for some a banging action to break the spasm, but care is needed

      to prevent damage to vertebrae. I would expect that there would be other acupressure points similar to those between the nose and lip. The rectum can become full very easily and low down by the Anus the dried out faceal material can no longer be re-hydrated and builds pressure on the nerves.

    • Posted

      Replying to my own post, after a couple of months!

      I've noticed the punching technique doesn't work so well for me anymore, but a MAJOR thank you to the person who suggesting pinching the skin between the nose and the upper lip!!!!  That's my go-to solution now, and it's something I can do anywhere.  (On rare occasions, I get an attack in the middle of the day, at work, and this is a lifesaver.)

      I had an attack in the middle of the night a few nights ago that woke me up (of course), but I pinched and was able to fall back asleep within a few minutes.  I used to suffer for hours.

      This seems to be happening to me much more frequently in the last year... sad

    • Posted

      I had an attack this morning.  Woke me out of a deep sleep.  I will definitely try the "pinch" technique next time!!

    • Posted

      Yea Billie. I get the same type. Once every 6 weeks like clockwork, I'll get an attack around 3am while sleeping. Mine are the excruciating pain type. For 2 hrs (same length of time every time) it's so unbearable all I can do is scream & pray to be dead it's so bad.

      The pinch right under the nose & between upper lip (it's like right where bottom of nose bone is) technique helps tremendously. There's a nerve that runs there that takes the pressure away for some reason. Pinch hard. After a minute the pressure will begin to lessen significantly.

      Sometimes, if I can catch the attack right when it begins, the pinch will deplete it all together. But if it alrdy in full swing, it just lessens the pain by 3/4 intensity.

    • Posted

      how long do you do the exercise?

  • Edited

    I started having this pain after my last colonoscopy and thought it was hemmorhoids, but after describing the symptoms my dr diagnosed PF. I have it EVERY single night, waking up 2-3 times; and also suffer it during waking hours. I had never heard of it and am glad to found a community with whom to discuss it.
    • Posted

      put your feet up on a squatty potty while sitting on the toilet

      pain will subside

  • Posted

    I had never heard of this until it struck me this year at age 65.  When my gastroenterologist told me there is no cure, I just added one more pain to the pain of Lupus that I must endure for the rest of my time on Planet Earth; BUT, I learned of a Chinese pain remedy, called Corydalis, on the Dr. Oz show, and am pleased to announce that it seems to be working! I initially bought the pills (from Amazon.com), but know that ingesting it as a tea is much more efficacious, so purchased the powder and now take it twice a day.  Hope it will help you, too.

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