TLDR: how do you, personally, deal with your Proctalgia Fugax or other rectal pain? See below for more information.
I've only just joined CPA to ask for advice on managing severe rectal pain; Proctalgia Fugax. I've been suffering for years but it has only been diagnosed last year after many, many tests, a surgery and consults with GP's, specialists and surgeons. They all say there is no known cause, no known reason for the condition to flare up, and only anecdotal treatments. Basically, they have no help to offer since I appear completely healthy to them.
My experience of the condition is episodes of sever/excruciating pain through what seems to be waves of muscle spasms which also give the urgent feeling that you're about to have a bowel movement, like the feeling of diarrhea, however it's impossible to make any bowel movement during the spasms and any attempt to go to the toilet only makes the pain more intense. The first time I ever had an episode was when I was in my mid-late teens. I thought I was just severely constipated and that it must have torn up my colon, as it felt like someone sticking knives into me. Until recently, the episodes usually hit me around 3am and only while I was sleeping. However, nowadays it came strike at any moment, although the waking episodes are much worse and last longer.
My episodes of pain/spasms last between 30 minutes at least, up to 3 hours on one occasion. It's a very long time to be in such horrible pain. 30 min-3 hours is a much longer duration than most people apparently, so much so that the specialists/surgeons/GP's thought I was exaggerating and didn't really believe me. They would laugh a bit and say it lasts less than 1 hour, usually 5-10 minutes.
I have had minor success managing the pain with heat, usually from kneeling over on the floor of a hot shower while using 'the punch technique', although it seems to get less effective the more I use it. Hardcore painkillers (endone, codeine) which I had leftover from a surgery only seemed to help slightly. The pain gets so bad sometimes that I end up teary eyed, tensing up my whole body and unintentionally make pain vocalisations.
My question is: those of you suffering from this condition or other rectal pain, how do you deal with it? I need to try some new things to deal with the pain more effectively.
I just stumbled across this forum page and read your story after yet another PF attack last night at around the usual time of 2 AM.
Your story seems very similar to mine and I feel your pain and frustration.
I’ve been dealing with it for around 10 years now, it comes and goes seemingly without reason and I’ve tried many different pain relief techniques.
Some work well one time but then not the next so I usually have to go through a few until I hit the spot.
I used to take ibuprofen as soon as it hit then start massage and or stretching. I don’t take ib anymore because i have recently been diagnosed with an auto immune disease called ankylosing spondylitis and take regular anti-inflammatories for that so can’t really double up.
Some of my techniques.
A piriformis stretch helps when it’s just a mild attack ( if you’re unfamiliar just check on YouTube )
A spikey ball from a physio or even Kmart is quite effective but quite painful to dig in and get the right spot. Even a foam roller on the glute or TFL muscle has helped. Sometimes even on the hip muscle. Just between the hip joint and the top of the pelvis.
Just recently I tried and electric handheld ‘homedics’ massager. It was about 2-3 weeks ago and soon as the pain came on i I tried all the usual spots without too much gain. The pain increased so it hit the perineum and amazingly the pain almost immediately stopped. I was so stoked!
Last night when it started again I thought sweet I know the spot to hit but this time the cramp was more severe and the massager wasn’t as effective but still I was able to stop it after about 15 minutes which is around 45 minutes quicker than my usual episodes .
It seems that the cramps aren’t always in exactly the same spot, although the main pain appears to be there the trigger point to help release it is often in a different place.
I don’t know if you’ve tried any of these already, if not I hope I’ve been able to help because I know I haven’t had any help or advice over the last 10 years except for some crazy Doctor Who told me to fill a surgical glove with water, freeze it and when I get a cramp break off a finger and shove it up my arse. I never went back to him
have only joined also so as to add my experience with this and what I’ve done to try minimise the effects.
I’ve been suffering from this since about 15, so the better part of 25 years.
Over that time I’ve found that although It can happen at any time, once after sex, (heterosexual) I’ve been woken up at 2am a couple of times etc, and that it can seem quite random, I’ve noticed some important links to when it happens to me.
By far the most common link for me, it would have to be more than 95% of the time, is if I ever even remotely try expedite going to the bathroom. If I ever try rush the process even slightly, guaranteed approx 48hrs later I will have a movement followed Immediate by crippling pain/spasm in the bowl. For me it always lasts about 15 minutes. The pain comes, eases off after 6-7minutes, returns until about 15 minutes has passed, then eases off within about 15 seconds then gone! Like clockwork.
Don’t drastically change diet (unless it’s woeful of course) but I began having oats and fruit salad every morning for breakfast, I love beetroot etc so more of that, everything within reason without going over the top. More fiber. Foods that I know are going to assist with movement I had a little more etc. Now I might go a year without ever having an episode. Every now and again I might be out somewhere or be in a rush at home etc, I know what will happen if I even remotely force it, and when I do, like clockwork, about 2 days later (guaranteed after going to the bathroom again) I’m on the floor waiting for the pain to pass!
During one episode I sat on the floor hard against the wall, and that seemed to help a little, and once I used the pain to motivate me to run around the block! I tried one suggestion which was have a large ball to sit on and roll it around near the coxic, which I must admit did work quite well, but it’s impractical obviously to rely on an ever ready ball to be at hand!