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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.

7 likes, 261 replies

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  • lee44646
    lee44646 Guest

    Posted

    I have suffered from this since my early 20's and since no Doctor seems to care, how about we figure out what causes it so we can find out how to avoid attacks?  I see like most everyone else the bulk of attacks occur when sleeping.  So something is happening - relaxation? Bad dream? Nerves? Stress?  I must add that I can go months between attacks so perhaps its diet or physical activity related - or maybe a cause by a group of things?  I just want to know what causes an attack and what happens for it to decide to stop within 20-30 minutes on its own.  So messed up. 

    • itsapain
      itsapain lee44646

      Posted

      im late 50's and have had this 30 years. first one was middle of the night, on holiday, after sex. doctor was useless. anyway, there is no pattern i can see, . ive tried diet, all kinds of treatments. it usually happens in the night but can be triggered in my case by urination, or orgasm. my physio reckons its hyper tension in the pelvic floor ( yes ladies, us blokes have them too! ) so i am following an exercise programme to see. my therapist thinks its more emotional, and  as the body relaxes in the ngiht and adrenaline lowers, the spasms kick in. he has prescribed me very low dosage valium to take only when a spasm occurs. it relaxes the muscles and seems to work really well. as for the actual cause......im still looking and the best in harley st came up with sweet fa . i do wonder about dehydration though as a possibility. i empathise about gp's not caring. if they felt as if they were giving birth to a rugby ball thru their rectum, they might pay more attention!!!!!!

  • conniejoa
    conniejoa Guest

    Posted

    I read quite a bit of this thread but not all of it. Has anyone discussed any trigger food possibilities. Maybe it is just coincidental, but my attacks wake me in the night and are often a 20 - 30 hours after eating either movie theatre popcorn (with that disgusting oil added to it) or fish & chips or cake with frosting. I don't always get the attack after and probably eat one of those foods more often than I'd like to admit , so possibly just a fluke but it is consistant enough to make me think twice before I eat those 3 things.

    • itsapain
      itsapain conniejoa

      Posted

      i tried removing lots of things from my diet many years ago. it had no effect im afraid. of course, we are all different and in your case it could be an allergic reaction. my first ever attack was on holiday, in the middle of the night, and it is quite possible i was dehydrated. my therapist feels it is a natural bodily reaction to stress/adrenalin. my gp has no clue! i wish doctors could be made to feel the pain somehow, and then they may be more pro active in looking for a cure!
  • Merrymary
    Merrymary Guest

    Posted

    I've had this since I was in my 30's. Used to hit when I would be sitting on the couch and just be a strange pain. As I got older, it hit in the middle of the night almost every time. Very rarely do I get this at any other time. I sit in a heating pad until it subsides. I went to a new gynecologist and brought it up to her. She told me she has the same thing! It was so nice to have a doctor who has this also. She offeeed no advice on how to deal with it, I didn't ask for any. In fact I told her to sit on a heating pad and she was thankful for that advice lol. I still get this pain more frequently maybe once or twice a month.

  • cass51154
    cass51154 Guest

    Posted

    Hi, I have suffered from this over many years, I have IBS and suffer depression and anxiety as well, so I don't know if they are related. I found drinking a tonne of water would help and also I have a bidet toilet so the warm water flushing onto there would ease pain. The best solution I have now found is Magnesium oil spray, spraying directly onto there where pain is, helps immensely and pain eases in seconds - lifesaver. I hope this helps.

    • donna58019
      donna58019 cass51154

      Posted

      That is interesting as I have been taking a magnesium supplement for a few months and my attacks have dwindled to nothing for now!
    • itsapain
      itsapain cass51154

      Posted

      hi cass. thats interesting. i have looked online at magnesium sprays and there are several. can you be more specific as to what type or brand please? incidentally i also suffer from anxiety and depression, although my therapist seems to think that attacks are more likely AFTER anxiety or stress, as the body gets rid of the adrenalin it produces during stress attacks. ive had this for 30 years, and i also suffer from a lack of sensation at orgasm. doctors say there is no link, but they are the same people who usually say that proctalgia is all in the mind
    • cass51154
      cass51154 itsapain

      Posted

      Hi itsapain, I'm in Australia and the brand I bought is Amazing oils Organic Magnesium oil in the spray bottle. I originally used it to help my tennis elbow pain which it did, but I read somewhere that Magnesium helps eliminate pain, muscle spasms etc. so tried it when I had a PF attack and couldn't believe the results (www. amazingoils.com.au). I have not tried any other brands before but I would assume that they would do the job. I have also read that other people with IBS and anxiety issues also suffer from PF and have read that they could be related but I don't really know indefinitely. I hadn't heard about the adrenaline theory and that could be the cause. I have had this for years, I'm in my mid thirties now and only stumbled onto the name Proctalgia Fugax a few years ago as I was desperately trying to find out what caused these random, rare attacks. However, they have increased in occurrences in the last few years too when my depression and anxiety also increased. I do also find the attacks dissipate when I'm on anti depressants which is also interesting. They are worse when I'm dehydrated and I believe food allergies and possibly dairy is a trigger for me also. It's all a learning curve...

    • itsapain
      itsapain cass51154

      Posted

      hi cass. thanks for the info. i will look into that supplier over here. the dehydration aspect i can agree with . my first ever attack was late at night on holiday after a long hot day during which i probably hadnt taken on enough liquids. I have found that taking valium as soon as i feel an attack coming on helps, as it is a muscle relaxant. my doctor though is very reluctant to prescribe in case i start taking them for my anxiety.
    • cass51154
      cass51154 itsapain

      Posted

      No worries itsapain, I hope you can find a good supplier and it helps you like it does for me. Yes, I'm sure now that dehydration is a probable cause as well. I don't have any experience with Valium, but that makes sense that it would help - I suppose stress is also a probable cause. Good luck!

    • conniejoa
      conniejoa cass51154

      Posted

      This group is so helpful. It never occurred to me before that the common thread between movie popcorn and fish and chips might be dehydration instead of the oil. They are both very high in sodium. Not sure how frosting fits this pattern, but maybe it's some combo of the fats and dehydration. Maybe the hydrogenated oil increases dehydration? Don't know but I do know if I eat any of those foods again I'll be drinking s TON of water too!

    • itsapain
      itsapain cass51154

      Posted

      i take the valium only when i feel an attack coming on. i had to give my word to my doctor that i wouldnt take it regularly to combat my stress anxiety and depression. if the oil is as effective at stopping the attacks as the valium i will use that instead. i will also take magnesium supplement daily.
    • itsapain
      itsapain

      Posted

      update..........tried the magnesium oil but sadly it did nothing for me. except irritate the skin around my butthole! im sticking with the valium, taken at the first sign of any spasm, and the punching if i can get to doing that before it gets just too damn painful to try. that, and walking around the living room occasionally standing on one  leg like a constipated flamingo.  i am using the magnesium oils on my legs at night though - im told its good for sore joints. 
    • itsapain
      itsapain cass51154

      Posted

      just noticed your comment about how the incidence increases with higher stress levels. my consultant thinks that it might be linked to stress , but not at the time. rather, AFTER the stress levels revert to normal, and adrenalin drops back down. I went through a terrible time many years ago - separation, not seeing my kids,business going down the tubes, having to lay off the workforce, living in a single rented room (cue violins!) - and didnt have a single attack. only after, when things got a little bit back to normal can i remember having them start up again
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