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
Step101 Guest
Posted
Hello..so I am pretty sure I have this condition..I have so much pain in my bottom area and the only way I can describe it is a great deal of pressure or the feeling of something huge trying to escape..I don't know any other way to describe the pain. It happens about every 6 weeks or so. My most recent episode was last night..I'm usually trying to past stools when it happens but last night I was headed to bed and the pain had me crouched over..I could barely move..this time I also experienced some cramping in my lower belly and pelvis muscles seemed to be tightening up..can anyone relate
Guest Step101
Posted
Yup that sounds familiar to me. ...for me it also started while trying to pass stool but changed into a nighttime thing. Now it wakes me up at night. My prayers are with you, my friend! It's painful as heck but it seems to be benign in nature, doesn't actually harm us.
cory31975 Step101
Posted
Welcome to the awful hell of proctalgia Fugax step101. Pinch very hard just below ur nose in between ur nose & upper lip. There's a nerve there that will dull the pain greatly or sometimes if you catch it while it's starting to come on, it'll stop it dead in it's tracks. That one works best for me. Other people use the punching technique. Try punching the anus to send shock wave up the muscle. It works for some but pinching hard just below my nose works best for me personally... Welcome to the monster the rest of us deal with...
Guest cory31975
Posted
Step101 Guest
Posted
Hello..so I am pretty sure I have this condition..I have so much pain in my bottom area and the only way I can describe it is a great deal of pressure or the feeling of something huge trying to escape..I don't know any other way to describe the pain. It happens about every 6 weeks or so. My most recent episode was last night..I'm usually trying to past stools when it happens but last night I was headed to bed and the pain had me crouched over..I could barely move..this time I also experienced some cramping in my lower belly and pelvis muscles seemed to be tightening up..can anyone relate
fredbloggs Guest
Posted
Half a bar of >70% cocoa chocolate, or a couple of very strong cocoa drinks a day has stopped mind dead!
You could take magnesium malate supplements from Amazon.
I'm 66, and had this since I was 14!
joyce10422 Guest
Posted
So last night, after being woken up by the all too familiar pain in my butt, I found myself on the toliet at 3:00 am. Feeling the stabbing pressure and feeling like I needed to have a bowel movement but knowing that wasn't the problem, I grabbed my phone and started searching for answers.
Like many of you I have been having these episodes since I was about 12 years old. I am now 56. Being a 12 year old I wasn't going to tell anyone about this strange "pain in my butthole".
Anyhow, I was so glad I found this site. I have asked my doctors about it several times and they just stare at you with a blank look. And feeling stupid about even bringing it up I just stopped asking.
My pain does not last just a few minutes. Nope. Mine are excruciating for at least 15 minutes or more. Sometimes lasting several days. The only relief I have found is to get up as soon as I feel it starting, (usually waking up from a sound sleep), grab a wash cloth, get it wet and heat it in the microwave for about 20 seconds. It gets really hot but it has to to bring relief. I roll it up and stuff it in the crack of my butt and climb back in bed. (By the time I get back to my bedroom it has cooled off enough that it won't burn my skin but stays hot enough to work. ) This usually brings enough relief that I can go back to sleep within 15 minutes or so. This time, my pain has remained throughout the day as a dull aching pressure. It's almost time for bed and it seems to be getting worse. Oh joy.
After more research last night I finally think I have found a name for my pain..... "Levator ani syndrome". It is similar to proctalgia fugax but has a different pattern of pain. Unfortunately, there doesn't seem to be a cure. So I guess I will continue to keep a stack of wash clothes close at hand.
I hope this helps some of you still looking for relief. I would love to hear more about other stategies that have worked for you.
Take care all. Here's to being a true PIA. 😊
katie74269 Guest
Posted
Hi! I, too, stopped trying to explain it to my physicians after having suffered since I was about 8 years old (I'm now 38).
I recently relocated to Washington state and I've found that naturopathic doctors are much more common out here than they were back home (Tennessee).
The N.D. I found here has not only heard of proctalgia fugax, he also had a lot of advise about how to manage symptoms.
Sadly, no cure and only guesses about prevention.
Symptom/pain management ideas the N.D. gave me included the usual hot bath and hot washcloth applied directly to anus (which is gross, but works for a few minutes at a time).
He also suggested smoking weed which is heavy in CBD, not THC. (It's legal here and the CBD kind won't get you high, but it will alleviate pain very quickly - edible CBD will work, too, but edibles take a while to "kick in," so smoking it is best for fast relief).
One thing he suggested (and as an RYT myself, I agree) is specific yoga poses.
When performed properly, the poses work wonders.
I hope some of those tips help you out. Good luck!
julie62021 katie74269
Posted
Hi Katie, are you able to give any information about the yoga poses? I'm interested in giving it a go.
JEdwardsUS Guest
Posted
I suffered my first episode about 2 months ago and I'm 57 years old. The pain was excruciating and I was virtually incapacitated. Being a prostate cancer survivor, I was terrified that it was colon cancer. But after blood work, stool samples, CT scan, an attempted rectal exam (too painful!!), and normal results for all the tests, my gastroenterologist suggested, by process of elimination, that it might be proctalgia fugax. My wife looked it up on her iPhone right in his exam room, and it described what I had to a T. He mentioned that there were a number of reports that indicated albuterol (inhaler) was effective for some patients (and he actually had a patient that tried it and it worked). My wife has a prescription for an albuterol inhaler, so we decided if the pain came again I'd give it a try. Well, tonight I started having another episode. My wife showed me how to use the inhaler, I took 2 puffs since that is the dosage she uses, and I'll be darned -- the pain subsided within 3-5 minutes. I can still feel a bit of tightness, but the pain level is about 2 compared to the 7 it had been before using the inhaler. I wish I had known this 2 months ago - my pain level was a 9 and the episodes lasted from several minutes to 4 hours. Over the course of two weeks, I lost 10 pounds and was in bed for a week straight. Using the inhaler tonight and getting relief is a godsend. I hope there are others out there that will discuss albuterol as a treatment with their doctors. Botox injections are also being used successfully for proctalgia fugax, so that is another treatment to discuss with your doctor. But if albuterol would work for you, it beats an injection in the butt! I'm going to call my gastroenterologist tomorrow and let him know the inhaler worked for me.
jim77426 Guest
Posted
Hi JEdwards
I'm glad you found something that works for you. No one should have to live with that kind of pain. My own solution is a thing I called the 'punch technique', whereby I strike my anus with the back of my fist, primarily with the first knuckle to focus the impact. The aim is to neutralize the painful spasms, which it does immediately every single time after about 40 strikes. So it takes about a minute and the pain is completely gone. At least that's been my experience since I developed this technique about 15 years ago. Everyone has a different experience with PF so we each need to find a way that works for us. Please keep us up-to-date with your progress.
Thanks and good luck!
Jim
JEdwardsUS jim77426
Posted
Hi jim77426,
I wanted to let everyone know that I have experienced 2 more episodes since my last post. Before they reached OMG-level pain, I took two puffs of my wife's albuterol inhaler -- BOTH TIMES, the pain (and spasms) subsided within a couple of minutes. I have done some more research and have found a fair amount of information in legit medical studies that mention albuterol (aka salbutamol and marketed as Ventolin) has successfully provided relief to some people experiencing a PF attack. As is the case with all treatments, albuterol will not work for everyone. However, it does have antispasmodic properties and is being used successfully by many PF sufferers.
I would suggest to everyone that they discuss albuterol as a potential treatment and have their doctor prescribe one inhaler just to give it a try. It will not have an adverse effect on your lungs if you don't have lung disease of some type (asthma, bronchitis, COPD, etc.) and it is not habit forming. If it works, it surely beats (no pun intended) wailing the crap (sorry, again, no pun intended) out of your rectum. And, if you have an attack while engaged in an activity that prohibits you from an alternative relief attempt, like driving or sitting in a meeting, you just have to whip out your inhaler and take a couple puffs.
I've read the speculative comments about what sufferers THINK might be the cause, but all the medical data I've read agrees that there is no know cause nor treatment. That said, further research may find a number of causes. So I guess the best you can do from a preventative approach is eat healthy, take vitamins if you're so inclined (just don't take too many - that can cause all kinds of issues), manage your weight, get an appropriate amount of exercise, and take care of your soul.
One of the challenges we face is that most general practitioners have never heard of the condition, and many specialists apparently haven't either. Were it not for my gastroenterologist, who arrived at PF by process of elimination of other conditions based on my symptoms, I would still be scared spitless that I have cancer again.
Here is a link to the results of a medical study, performed in 1996, on the effectiveness of albuterol as a treatment for PF: https://www.ncbi.nlm.nih.gov/pubmed/8677929
Another treatment that has shown great results in clinical trials is botulinum toxin, more popularly known as Botox. While most people think of celebrities with unmoving faces when they hear the name, Botox has been successfully used for a number of medical conditions. A friend had a Botox injection in his esophagus after suffering for years from Achalasia, and it provided immediate relief. Here is a link to a clinical trial that showed NO RECURRENCE of PF, albeit with a limited number of patients, for 2 years after treatment with Botox: https://www.ncbi.nlm.nih.gov/pubmed/16597379
So in the meantime, we need to do our best to educate our medical professionals and, hopefully, in the process, help more sufferers be correctly diagnosed and successfully treated.
Good luck to all!
JEdwardsUS
Owl555 Guest
Posted
*IT WORKED!!!!!!!!
Thank you
cory31975 Owl555
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Owl555 cory31975
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Owl555
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