Proctalgia Fugax
Posted , 123 users are following.
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
carriosity Guest
Posted
Ok, kindred sufferers....I have a question for you. How many of us are SERIOUS coffee drinkers?
I saw a recent post about dehydration possibly being a catalyst for our tearful midnight wake-up calls. This comment really got me thinking about my coffee consumption. I am truly a coffee-holic. I have, at least, a pot of coffee every day. And I like it STRONG. The reason I bring this up is that coffee is well known for its dehydration effects on the body. I am pretty bummed out about the possibility that my life-long love, coffee, may be the cause of my (almost) life-long distress. I have been dealing with this unbearable, debilitating condition for upwards of 30 years now and the older I get, the longer the episodes seem to last.
Also, in response to a recent post about warm enemas being the 'cure', I have tried this several times over these years, as well as the punching technique just recently, and while these methods did dull the intensity a bit, they did not come close to ending the pain. I think we are all unique and what works for some will not necessarily work for others. But if dehydration, in my case due to over-consumption of coffee, is a possible cause of this nightmarish condition, I'd really like to attack the problem from that end of things. No pun intended.
I just wonder how many of us
itsapain carriosity
Posted
carriosity itsapain
Posted
I wonder about general dehydration, too. My husband never drinks enough water and he gets foot and leg cramps frequently. It's seems clear that these spasms we suffer from are muscle related. But wow...who knows? This is such an overwhelming problem to have.
itsapain carriosity
Posted
francis6696 Guest
Posted
Here's how I deal with it: over the last decade I had kept detailed calendars noting common details to try and get a handle on the pain which can literally make this grown man cry. For me, this is how it goes:
ONE: It all depends first on how satisfied I am with my life; this is the first phase and most crucial aspect affecting me. The more dissatisfied with life the stronger my second phase; the happier I am the less severe and fewer number of episodes I have.
TWO: Level of dissatifaction causes an enormous elevation of testosterone which causes a moderate to severe increase in aggression causing me to cuss, tell, and honk in traffic and verbally confront others when otherwise I would ignore them. I used to self medicate with massive amounts of dark chocolate and one girlfriend used to stock the freezer with chocolate ice cream. Sex drive also hits the ceiling within a couple days of the pain arriving.
THREE: During this day in my cycle, pain can be triggered by different things; It can occur seconds after having sex, minutes after a bowel movement, while sitting and watching tv late at night, or around 3am while sleeping. Occasionally at odd hours during the day.
FOUR: I've learned not to ignore the earliest of pain. I used to grab a handful of ibuprophen, chew and swallow fast, but now I immediately sit on the edge of a solid surface (counter edge, footboard of bed) rock back and forth and side to side until I find the exact spot which will act the same as a deep muscle massage and dispell the pain. This might take 5 - 10 minutes before I am confident the pain is gone. Sometimes if I'm not quick enough or stop too soon the pain will migrate from one side to the other either during the rocking or after I lay back down and drift off tho sleep waking me up again. The pain is still present while rocking but is held back and pushed farther away all through the rocking.
FIVE: The next day I am uncharacteristicly happy with zero sex drive and no morning erection. My guess is that the pain corresponds to the highest level of testosterone which bottoms out after the pain episode. A few days later I am back to being a normal guy.
SIX: The chocolate ice cream girlfriend noticed that my cycle perfectly synced with her monthly cycle so if you you live with a woman you might want to check her calendar out of curiosity.
Finally, I feel that my state of life satisfaction is the primary key in my pain experience. I was extremely unhappy with the chocolate ice cream girlfriend which happens to be when my pain first appeared. When I left I was pain free for over a year.
itsapain francis6696
Posted
seriously though, i find it a bit chicken and egg. what comes first, the attack or the unhappiness? which is the cause, which is the effect? i myself have general and chronic anxiety depression, but who wouldnt with this damned condition? ! i also found out the power of the subconscious when i had symptoms identical to my heart attack on a crowded train, couldnt breathe, quietly told my mate i was on my way out (who informed me i was a nice shade of green), and collapsed. only after tests did i realise that it was the anniversary of my heart attack to the very day. in other words, i had had a panic attack of the first grade. the mind can do some powerful sh%t!
im seeing a physio now who specialises in conditions of the male pelvic floor. yes, us men have pelvic floors too!!!!!!!! he believes that over - tension in the pelvic floor causes the spasmic reactions and we are working on finding trigger points - yes, painful but if it sorts it, i dont care. i have fainted from the pain of an attack before, so someones finger up my passage is a price im prepared to pay. combined with exercises to relax the muscles internally, i hope to find the solution. after 30 years there must be one out there somewhere.
in short i think while we have the same symptoms or similar, the causes may well vary from person to person
Mags19 Guest
Posted
I've had this problem for years and only last year mentioned to my gastroenterologist as I thought it must be something to do with the fact that I'm coeliac and have had bouts of colitis in the past. He know exactly what it was and offered me medication for it, but I declined as it happens so sporadically.
the only relief I get is to walk up and down the stairs until the spasm subsides. It is really difficult to force my self out of bed and to move, but otherwise I lie in bed writhing in agony which seems worse! Sometimes as the spasm subsides I pass wind which also helps. Bathing the area with a facecloth and warm water, is soothing too. But it's an effort when the pain is intense. You have my sympathy.
best wishes
lovemuffin Mags19
Posted
Hello Previous People
PF has got to be the painfully debilitating condition there is. And me, food allergies are my. triggers. In addition to pf, I'll get a host of other allgeric reactions.
Began to examine everything you ingest ....everything!!!
y66059 Mags19
Posted
Hi Mags,
I also suffer from this sporadically and it goes when I get up and pace round in a circle. I figured it feels like a cramp so if I can get oxygen to whichever muscles they are it will go away. It happens to me a few times per year and it seems to happen when I'm dehydrated and have had caffeine and alcohol late in the day. The last few times I've had those things I made sure I had a glass of water before bed and I didn't get the pain. I tried the punching method but can't convincingly punch myself while I'm in pain! I've also mentioned it to 2 doctors in the past and they've brushed it off. You seem to be one of the few people who've had a sympathetic reaction from their doctor! All the best for managing this and your ceoliac.
adam72140 Guest
Posted
Thank god I have found this discussion.
I am currently lying on my bed and have been for 45 minutes in immense pain, thinking I'm dying once again by this ghost that likes to dry fist me! Luckily it seems to be dissipating.
I've had this for years now and never knew what it was until now. My doctor had no clue and basically told me to deal with it (armed forces doctor). I will try the punch method as mentioned before and the vitamin B thing is definetly worth a shot.
It scares the hell out my wife and daughters when their husband/dad literally has to stop everything and lay down before I collapse through the instant pain it causes.
A lot of people seem to struggle with this and I'm surprised it's not recognised by a doctors quicker than it is.
Thank you for all the advice above and will see if it all helps with future episodes
cory31975 adam72140
Posted
My case is bad Adam. It'll happen in dead of night. For 2 hrs minimum I'll sit on the toilet screaming. Sometimes the pain is so intense it'll knock me unconscious. I'll wake up on the bathroom floor.
Try the punching method...
Skazie adam72140
Posted
Hi Adam and all people in here. I just received notification on my email and I said I will stop posting here as I have already mentioned in this post that I have found a cure. For the last 5-6 episodes I have used this method and it worked within a minute.
I highly suggest this method and forget about the rest.
The method is basically simple..ENEMA with the shower hose. it is not messy as other people they haven't tried and commended. luke warm water not very powerful pressure, hold the water in and empty your boweels in the toilet..you will calm down in a minute.
Please try as I suffer for over 30 years and I am only 37.
I don't know why it works but probably it triggers the muscles they have spasm and there is immediate relief. If you try please let me know..
Alex
cory31975 Skazie
Posted
Skazie, what's a shower hose?
Skazie cory31975
Posted
Check online Cory..
The hose is attached to the shower head in your bathtub or shower..just unscrew the head and use the hose...then clean it of course... don't insert the hole think in your rectum..just a bit in order to let the water flow freely inside your rectum...then hold the water inside and empty your bowels in the toilet...
Skazie
Posted
lee44646 Skazie
Posted
During my last attack I found that while laying down, pull your legs up as close to your chest as possible and hold. Arms wrapped under your knees. This stretches the area where the spasm is occuring and for me it almost instantly made it go away. I tried this after the punch method didn't work.
Mags19 cory31975
Posted
Hi, your pain sounds much worse than I experience. I am usually reduced to tears though. I find the pain excruciating and far worse than even giving birth!
can I suggest that you don't sit on the toilet for two hours, it doesn't help and you risk developing haemorrhoids. Also if you faint you have further to fall and risk injury.
Try kneeling on all fours and rocking backwards and forwards, holding in your sphincter muscles as tightly as you can then relaxing them.
'I think it's better to keep moving, although it's very difficult when you are in so much pain. But I've found that I'd rather concentrate on movement than curling up and crying in pain.
i spoke to my gastroenterologist (I'm coeliac and have bouts of colitis).
he knew the problem immediately, he was really sympathetic and said he could give me medication for it. I declined it though, as I don't really want to take another tablet, especially for something that occurs irregularly.
hope even a bit of this helps.
regards
cory31975 Mags19
Posted
Cory
grazey Skazie
Posted
Hi Skazie, I too use the emema treatment for years with outstanding results. As I travel away from home at odd times for convenience I take a plastic syringe with a 6 inch length of soft plastic tube attached. The syringe is about 40 ml and is available from chemists. It's very portable and is dead easy to use in any bathroom. I fill the syringe with warm to hot water and soap up the anal area to ease insertion. I am trying to work out what brings on a Proctalgia episode and am convinced that diet is of no consequence. I contend that he pain is associated with the Pudendal nerves in the rectum.
itsapain grazey
Posted
hi grazey
?to be frank, if an episode gets into anywhere near its full strength, i wouldnt let anybody within a mile of the anal area, let alone insert a syringe. i have to either catch it as soon as i notice it starting, take my valium ( to relax the muscles spasm ) and try the punch technique. if that doesnt work its a case of walk, or hop, or do whatever i can to help ease the cramps. a comic scene i admit, but the pain can so overwhelming that what i look like is irrelevant. while the number of attacks is the same as ever, the intensity does seem to be less on average, so perhaps my approach has benefits. but im sure it isnt ''one size fits all'' and we all have to do what works best for us individually.
?i agree, diet is doubtfull as a cause, but i do wonder about dehydration. a counsellor i saw suggested it is after times of stress when the adrenalin starts to subside.