Proctalgia fugax is ruining my life

Posted , 27 users are following.

Hello everyone,

I'm just hear really to see if I can find some support to help deal with this god awful disease and also to find out if others are experiencing the same thing I am really. The attacks started about 5 years ago now it's pretty standard and the attacks are always the same, I awake in the middle of the night with severe pain like a burning feeling, when I make it to the toilet I am saturated in sweat and coming in and out of consciousness, I try to tell myself I'm not dying (but the pain is so bad I don't really convince myself lol) and normally end up with 3 or 4 waves of diarrhoea. I usually faint and the last time I cracked my head open on the doorframe and needed seven stitches in the back of my head. I had a bowel perforation when I was 19 (I'm 28 now) and to tell you the truth I hate self pity but I am so fed up right now. I had a daytime attack 2 weeks ago and ended up in hospital for 3 days which is where I was actually given a name for this total pain in the butt, I'm still in pain now and I just don't know what to do, is this normal? I'm not sure what I really need but a friend would be nice who understands as I dont really feel all my family and friends as supportive as they are can really understand the terror that this thing causes especially in the middle of the night when no one is around etc.... I'm so sorry to ramble, I'm just so relieved I'm not the only one and that I finally have a name for this thing and perhaps I can now start to accept this is something I have to live with even though it is horrific lots of love and best wishes to u all ashley xx

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  • Posted

    Hi Ash,

    I'm a 41 yr old male who has suffered w/ this since I was 12 yrs old. Every 4-5 weeks I'll be awakened in the middle of my sleep by the worst pain you can ever imagine in my rectum. Ill sit on the toilet for 2-3 hrs screaming in pain. Sometimes to wake up on the bathroom floor because the pain is so intense, it knocks me unconscious.

    I feel your pain trust me. Try punching your rectum 20 times or so to send up a shockwave up the sphincter muscle. It really works to stop it in its tracks. Or a warm enema works also.

    But the "punching" technique works best for me

    Cory

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    • Posted

      Hi Cory,

      Thank you so much for the reply and thank you for the recommendations I am so sorry you have to suffer this too!

      I will definitely try the punching method although I have to say it sounds an awful thing to try when the pain is so bad but hey if it works it works! The doctor prescribed me an inhaler today so I will also try that the next time I get a visit!

      Do you also get diarrhoea with your attacks as it doesn't seem to be a typical symptom so I'm a bit confused! There doesn't seem to be any rhyme or reason to this thing and I can't think of any triggers that set it off.

      Thank you again for your reply

      Ashley

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    • Posted

      Potassium helps w/ less triggers. I also notice an episode will come when I am dehydrated also. No diarrhea tho for me.

      Stay hydrated. This helps. And takes alot of energy from me to have an episode. The next day I'm out of it

      Cory

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    • Posted

      For some people on this site, the punching technique makes their episode worse.

      But try it for urself to see if it works.

      If not, buy a enema bottle from Ur local pharmacy & shoot warm water up there, hold it in for a short bit & expel the water into the toilet. A warm water enema does nicely also

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  • Posted

    The punching technique makes some peoples episodes on this forum worse for them.

    So if this makes it worse, try stopping at Ur local pharmacy & grabbing a self enema kit. Fill w/ warm water when an attack arises, hold it in for 20 seconds, expel the water into that toilet, & usually within a minute or so it'll subside.

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  • Posted

    Hi Ashley i to have suffered with this but to a lesser degree than most of the people on here Try taking a magnesium tablet every day it is supposed to relax muscles .Since taking them the attacks are less severe and less frequent.Hope this helps .Good luck Gordon
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  • Posted

    You poor thing, it sounds like your attacks are pretty hardcore! Mine started at around the age of thirty, soon after I had my children. I also get pudendal neuralgia which affects the frontal area and both conditions, among others triggers, get set off by orgasm but often there is no obvious trigger as it happens in the middle of the night during sleep. I get a feeling of dread when I wake and feel it coming on. Now though, there are a few solutions to try! Yippee! I wish I'd had all the information from this forum years ago. The punch is a new one to me but I have tried it a few times and it has alwys worked. I use the end of a baseball bat, it's just the right size. This is best done in private as I think a partner waking up to see you doing this could traumatise them! I haven't tried the enema thing, I'm not too keen on asking for one in the chemist but I will keep it in reserve if the punch stops working.

    i don't feel bad the next day, and I don't get diarrhoea but I sometimes think if I've had a bout of it beforehand, it might trigger an attack later that night. I do sometimes get it come on during the day while out walking or if I've been sitting for a while. There's no real rhyme or reason, just another thing sent to try us! Horrible, horrible condition, I hate it! Good luck with the techniques suggested here.

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    • Posted

      Hi everyone thanks so much for all your advice I will definitely buy some magnesium and Perhaps a baseball bat haha! To be honest I'm going to try anything next time, luckily I haven't had an episode for a few weeks but it is that dreaded TOM so if it's going to happen it is usually about now! I'm going to be more positive about it now though and I'm just relieved I finally have a name for this thing although it's not exactly something I really want to explain to people! 'Oh yeah my anal muscles like to spasm!' Lol! I'm going to try and see what the link is with the diarrhoea, although to be fair it probably makes no difference. This thing really is a total pain in the arse!! Happy days love ashley xxx

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    • Posted

      Hi Ashley, it's Cory again. If you have noticed in a lot of past posts by quite a few of the peeps on this forum, they mention dehydration being a potential trigger for bringing the attack on.

      I never used to drink hardly anything during a day. About 5 months ago, after reading those posts about being hydrated, I began being strict about drinking half my body weight in ounces of water per day.

      Since then I haven't had a single attack. And I used to get a major attack about once every 4 weeks since I was 12 yrs old.

      So hydration does, in my case play a huge part in my attack frequency.

      When our cells aren't hydrated, our neurotransmitters cannot relay signals correctly back & forth which control our muscles.

      So good hydration will deplete episode frequency...

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    • Posted

      I also endorse what Cory said about magnesium and drinking more water. I've noticed a real decrease in attacks since I started taking magnesium an hour before bed and drinking more water throughout the day and especially before bedtime. I guess it's hard luck if you have a weak bladder.. It is worth it though, to not have that feeling of dread when you wake up at 2 am!

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    • Posted

      Hmmm.... After saying all this the other day, I woke from a deep sleep the following morning at 5 am with the worst attack I've had in months! It lasted an hour and I tried everything in my armoury to try and get rid of it, to no avail. Eventually resorted to paracetamol and it went but probably would have just gone on its own anyway. Talk about famous last words or tempting fate! I think I'll just keep quiet in future 😖😖😫😫😢

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