Proctalgia experiences

Thanks for your accounts Jen.

I was diagnosed with PF early this year. Reading other accounts on here, at the mo I appear to have be getting off quite lightly. I had my last major attack during a period in Jan. I went back to work soon after but suffered bad attacks while at my desk. This was so bad as I was gripping the desk, sweating and trying to put a brave face while talking to someone. These attacks weren’t as bad as just before other wise I would have been on the floor in front of my workmates, huddled up and clutching somewhere on my backside, although as its inside its hard to know where to grab!

Since then, I have had feelings where I believe it’s just going to kick off again, but thankfully don’t. Even sitting here as I type, I can feel murmurings like it could go. I was told the spasm was to do with a levator muscle. The muscle apparently builds up energy and when enough is in there, it releases itself in these spasms that go on until it’s worn itself out. In time, it will build again until the next lot of energy is released through spasms.

You are right as this is so scary and there is no control over it. You try to describe to others what is going on and what it feels like, but how can they actually realise what intense pain this is unless you have experienced it. Quite why we have been the ones chosen to experience this kind of pain?

With no clinical remedy for this, believe there are a number on here monitoring and trying all sorts of things to find out what causes this, and what the best relief is.

Since the last attack, I have stopped eating nuts, or try to as there are a number of surprising things that contain nuts. All I put this down to was doing something out of the ordinary and that was binging on a tub of nuts left over after Christmas.

As for investigation for science to find a remedy, I would put it quite high on the list. Although you think you might die as on a scale of one to ten of pain, it must be a nine, it’s not life threatening, although there are a number of accounts on here of people passing out which is potentially fatal depending on where you are, or what you are doing. The women on here have said it’s worse than childbirth.

There should be a national PF day to make people aware of this. What fun the rest of Joe public would have through hearing about this condition. We would be classed a pain in the bums.

Best of luck everyone. We feel quite alone, but if it helps we can continue to communicate between ourselves on here as we understand what each other have or are going through.

Hi, just wanted to add my thoughts on this. The anti-depressants may have worked for you because this particular kind works on the nerve endings. My consultant has recently prescribed this for my pain, but as yet it hasn't helped. But I'll persevere!

Posture is one thing that brings it on for me so I avoid sleeping on my stomach and don't fold my arms over my stomach. But these are not the only triggers. When away from home I always carry a hot water bottle, soluble paracetamol & codeine, and a Ventolin inhaler. Together, with a hot drink, these are the best course of action, and I've had years of this to test things out. As I said on an earlier post, I've also found that Ginkgo Biloba has halved the number of attacks for me.

I have had a few episodes of Proctalgia Fugax (self diagnosed) and I can't imagine having an episode in the daytime while trying to hold a conversation!!

In doing some research recently I came across a reference to PF as being a possible symptom of Coeliac/Celiac Disease. (I have only seen one reference to this in an article written by a GP). Seeing that Coeliac/Celiac Disease is now reputed to occur at much higher frequencies than was previously thought (UK/Italian studies 1:100; US studies about every 1:133 people) it's feasible that some of the sufferers of PF who frequent this forum may have Coeliac/Celiac Disease/Gluten intolerance. May be worth looking into!

I don't think that anything can be ruled out, and it's clear from experiences on here that some suffer far worse than I do, and mine is bad enough. But for me it's definitely about posture as 'everything else' seems ok. One other thing does make me wonder, and that's the fact that my appendix was removed when I was nine years old. I wonder if invasion of the abdomen causes some long term damage to the nerves, which could also be relevant after childbirth.

I did not have any attacks prior to that operation but can't be certain when they started, other than my late teens. In the beginning, the attack always began on the toilet, and very occasionally still does. But now it will start anywhere and any time of day. Not easy when at work or commuting!

Take 120mg of verapimiil daily. You will never have another attack.