Since the beginning of this year I have been experiencing what I think is Proctalgia by it's description but when I get it the anal pain is excruciating where I experience nausea, a cold sweat and dizziness and fainting, I always faint after which when I wake up the pain has gone completely. It happened recently in the GP's waiting room where as usual I fainted and so I got some data to ponder, my blood pressure dropped from around normal 130/70 to 90/70, my heart rate was slightly lower than normal at 64 BPM where normal resting is about 72 BPM and the ECG found nothing wrong. Now I already have Orthostatic Hypotension and this Proctalgia thing seems to come when I experience dizzy spells because of the Hypotension so I feel it is linked somehow but I also think my lifestyle might be causing it because I am mostly sedentary and so I am currently engaged in doing more exercise to see if gets any better. My Gp is aware of it but myself being an XXY male he is reluctant to do anything until he has a report from a geneticist as I don't have the typical endocrine conditions associated with 47, XXY. So does anyone else experience fainting with this thing ?
hi andy. im a 55 yr old male. yes i have fainted during an attack but luckily only 3 times and they have occured when the pain has been at its worst. literally unbearable. so im actually glad when i DO faint if its that bad. like you, the pain has gone when i come round. ive got no data from the attacks but your description fits mine precisely. im not aware that i have hypotension but i did have a heart attack 7 years ago. the proctalgia has been with me for 24 years. i have an attack roughly once a month or so. sometimes after orgasm, or defecation, but normally in the middle of the night . ive had ALL KINDS of examinations with no success. another condition i have is ejaculatory anhedonia - lack of sensation at climax - and i have wondered whether the 2 are linked although ive never found anybody else with the 2 conditions. im currently trying acupuncture with physio from a practitioner who offers both treatments. we are looking at old damage to bones and muscles in the back/pelvic area. ive had a few mini attacks since so i figure i might be in the right area.
Thanks for replying, a clue perhaps which might help yourself with this thing; take quinine in the form of a glass of indian tonic water in the morning, from advice elsewhere on the web others are doing this and reporting less attacks and when they do come they are les severe. my GP also recommended the tonic water for the quinine content and so I do that now, it's cheap, so it's worth a go. Also talking with women who get the levator ani syndrome which is similar, they believe the pain is similar to period cramps and can well understand the fainting I experience and so is it that levator ani muscle at the base of the pelvis that goes into spasm? Mine seems to be triggered by lack of sleep and food, which are also triggers for vasovagal syncope, could there be a link here ? Sex, you are lucky I jave not had intercourse for eight years due to a low to non existent libido despite normal testosterone levels, just one of those xxy things I suppose.
Thanks for replying, a clue perhaps which might help yourself with this thing; take quinine in the form of a glass of indian tonic water in the morning, from advice elsewhere on the web others are doing this and reporting less attacks and when they do come they are les severe. my GP also recommended the tonic water for the quinine content and so I do that now, it's cheap, so it's worth a go. Also talking with women who get the levator ani syndrome which is similar, they believe the pain is similar to period cramps and can well understand the fainting I experience and so is it that levator ani muscle at the base of the pelvis that goes into spasm? Mine seems to be triggered by lack of sleep and food, which are also triggers for vasovagal syncope, could there be a link here ? Sex, you are lucky I jave not had intercourse for eight years due to a low to non existent libido despite normal testosterone levels, just one of those xxy things I suppose.
Thanks for replying, a clue perhaps which might help yourself with this thing; take quinine in the form of a glass of indian tonic water in the morning, from advice elsewhere on the web others are doing this and reporting less attacks and when they do come they are les severe. my GP also recommended the tonic water for the quinine content and so I do that now, it's cheap, so it's worth a go. Also talking with women who get the levator ani syndrome which is similar, they believe the pain is similar to period cramps and can well understand the fainting I experience and so is it that levator ani muscle at the base of the pelvis that goes into spasm? Mine seems to be triggered by lack of sleep and food, which are also triggers for vasovagal syncope, could there be a link here ? Sex, you are lucky I jave not had intercourse for eight years due to a low to non existent libido despite normal testosterone levels, just one of those xxy things I suppose.
i will try the indian tonic water. i have just had another appointment with my physio/acupuncturist. since my previous appointment i have had several ''twinges'' and a full on attack early this morning which woke me. as there seems to be a reaction of sorts, perhaps he is working in the right area
I do not have proctalgia but my symptoms are similar to yours. It sounds like you may have defecation syncope. This is the temporary loss of consciousness upon defecating.
I have experienced this many times - not always fully fainting.
It is caused by a vasovagal reaction that makes the heart slow down, the blood vessels in your legs widen, the heart puts out less blood, blood pressure drops, the brain is deprived of oxygen and you become light headed and sometimes faint.
All this happens to me while the bowels are having a major spasm causing severe bowel pain.
Your pain location sounds a little different to mine as yours is more in the anus area and mine is more in the lower bowel lhs.
The pain:
For me, the pain always arrives in the night between 1am and 4am. I am awoken by signs of mild bowel pain and an urgency to defecate. Pain increases rapidly and in 15 to 30 minutes I am in agony and sometimes unconscious. After I regain consciousness the bowel pain is completely gone.
The solution :
For me, as soon as I detect the first signs of bowel pain I drink a large glass of water and take two peppermint oil 0.2ml tablets. These tablets take 20-30 minutes to dissolve and reach the bowel. If the pain comes on slowly the peppermint seems to ease the spasm. If the pain is fast the peppermint does not arrive to the spasm area in time and I just have to bear the pain and suffer the consequences.
I have had this problem for almost 30 years. The number of attacks is increasing as I get older.
I hope you find a solution to your problem.
Try peppermint tablets and peppermint
tea. Reduce stress in your life if possible and carefully watch foods you eat.
I have had vasovagal response aka reaction aka syndrome since I was in my early 30's. The first time it happened I was diagnosed by my doctor over the phone. After that when it happened it was always misdiagnosed as a panic attack. Which I thought odd, since it would usually happen in the middle of the night while I was sleeping. This false diagnoses caused me a lot of distress, as my children thought I was a head case.
In the past year I was diagnosed with Levator Ani Spasms. Your Levator muscle is what lines your pelvic basin and holds all your innards.
Three weeks ago during one of these Very Painful spasms I had a bad vasovagal reaction. No amount of lying flat would make my blood pressure come up. When I went to the ER my blood pressure was at 67/44 and then it dropped even lower. That's when they gave me the atropine. I ended in the hospital for three days. I followed up with my internal medicine doctor and he immediately said it was a vasovagal reaction to the pain I was in.
I will also add that I once had this happen with orgasm, which kinda sucked the fun right out of that. I also have issues with lightheadedness when defecating and being in the heat makes me very ill as well.
I read there is genetic component to this, which makes sense. My nephew had issues fainting when defecating.
Anyway, there's my two cents worth. Best advice, read, learn, be your Own advocate and don't be bullied by doctors with bad bedside manners 
Dear 1andy16 you are not the only one that suffers with both conditions. I am a type1 diabetic but not through obesity or alcohol. I first suffered with proctalgia approx 5 years ago after my pancreus just packed up due to a pseudo cyst the size of a golf ball on my pancreus. Approx 6 weeks into my hospitalisation i started getting this pain in my rectum. Its got worse over the years and this morning i had an almighty one with gidiness and a terrible sore throat and cold sweating. I checked my blood sugar which was fine. I took 2 paracetomol along with a strong pain killer called oxycodone. That eventually shifted the pain after about 40 minutes of hell. I have spoken to my doctor about this and he has said its one of those mysterys that they have no cure for. I too suffer with anhedonia. My testosterone is virtually nil and another symptom of diabetes im afraid. I also suffer with ejaculatory problems where i get the build up then when i ejaculate it just drips out rather than shooting out like it used to.
Dear 1andy16 you are not the only one that suffers with both conditions. I am a type1 diabetic but not through obesity or alcohol. I first suffered with proctalgia approx 5 years ago after my pancreus just packed up due to a pseudo cyst the size of a golf ball on my pancreus. Approx 6 weeks into my hospitalisation i started getting this pain in my rectum. Its got worse over the years and this morning i had an almighty one with gidiness and a terrible sore throat and cold sweating. I checked my blood sugar which was fine. I took 2 paracetomol along with a strong pain killer called oxycodone. That eventually shifted the pain after about 40 minutes of hell. I have spoken to my doctor about this and he has said its one of those mysterys that they have no cure for. I too suffer with anhedonia. My testosterone is virtually nil and another symptom of diabetes im afraid. I also suffer with ejaculatory problems where i get the build up then when i ejaculate it just drips out rather than shooting out like it used to.
I had the sweating and fainting with my first Proctalgia Fugax attack, about 8 months ago. I was so scared, I thought it was a panic attack. Ive had about 3-4 more attacks randomly since. They are all when I'm sleeping.
Hi Andy,
I have recently started writing about my experience of this strange anal/pelvic pain as I have had it for 30 years now. A dr recently mentioned the proctalgia word so I have come across your post via a google search. wow! it is weird reading that other people have this happen to them.
I have found that placing a heat bag on the coccyx and a kind of meditation can alleviate the panic when the pain starts. I have had seizures and feinting with mine and numerous surgeries and mri/xrays that show no visible pathology.
I have given mine a name as it visits me more often than most friends and family. It has taught me of the transience of sensation and the desire to allow awful things to pass. Quite often I experience a post episode dysphoria and when I had a prep for a colonoscopy I had two massive seizures and woke up with red eyeballs.
What is this xxy? I have always thought I was male even though I am female and have lived a normal heterosexual life with two offspring and no plans to change gender.
My tailbone is always sore to touch so I am wondering if a colorectal and neuro surgeon could maybe determine whether I have nerve problems that need surgery(?)
I would give anything for it to not exist.
It happened this morning in a public place, twice whilst singing and dancing on stage and once when I was driving.
No pain killer is strong enough. would there be an injection at the site that may stop the pain?
It's diabolical. Worse than childbirth
I had this happen to me a few times, one being last night. It woke me up and the pain was severe. I tried changing positions, but nothing worked. It last about 15 to 20 minutes. Today i have stomach cramps...wonder if they could be related?? I tried explaining this to a few people and all i get are crazy looks.
Yes, I've fainted a few times. I had lots of tests done on my heart, only the tilt table test was positive; in a second my blood pressure dropped and heart rate halved to below 50 during this test. It seems I faint because my parasympathetic nervous system over compensates when I'm stressed out by the pain. Something similar has happened when I had pre menstrual pain. I soon come round and any pain has completely vanished! Instead I feel nauseous for the next few hours as a result of blacking out.
OMG, I am shocked and happy at the same time. I've been suffering from such episodes for over ten years. They come and go. The whole nine lol.. Waking up to the pain, crazy cramps, feeling that have bowel movement, running to the toilet and nothing comes out and then fainting. I used to wake up on the toilet floor every time. It took me a good 20 episodes to understand what is happening and why I'm fainting. The fainting is caused by the enormous pain. What I have learned over the years was to stay in bed and not get up as that would cause me to drop to the floor and hit my head.
When it first happened, it was diagnosed as a panic attack and then as hammerheads. Either way, the only solution that worked for me was pain killers. My doctor prescribed a muscle relaxer methocarbamol 500 mg tablet (ROBAXIN). At this point when i wake up into it, i know the routine: stay in bed, take a pain killer and wait for it to pass. It does happen once in a while during the day as well. I was never able to pin point the cause but i do think, stress is a factor as it happens more often when i'm swamped (not always though)
Lay on your back with no pillow and raise your feet 10 inches off the ground by resting them on a stool or something. This has stoped my previous fainting from proctalgia fugax. It also takes the edge off the pain. Lay down as soon as you can as remain laying in that position for 5 mins after the pain has gone. Painkillers and drugs for the nervous system ( pregabalin ) have had no benefit for me, only this. Good luck folks.
HI Amy. I am 57 and have suffered with extreme attacks since my early 30's. Tried everything to no avail. 6 months ago I came across a blog describing the "punch method" to eliminate pain. I tried it and it worked immediately. Since then I have been awakened 4 or 5 times and it worked on all occasions within seconds. My episodes were extreme and could last hours. This works with no drugs or passing out. Kevin
I have very similar experience. 56yr old male. Had first episode a few years ago. Now happens every few months. Usually at night have severe rectal pain, i try to go to the toilet to no avail. Faint when returning from toilet and wake up feeling better but not perfect. Had a colonoscopy that showed nothing other than Diverticulitis.
I am now 64 years old. This has happened to me around 4/5 times since I was in my 30's. Always in the evening or when I'm awakened during sleep. Intense rectal pain, feinting and profuse sweating. I've also had a very dull ache in my pelvic floor for many years and painful orgasms. It happened to my again last night. Hence my coming across this site. It seems hopeful to at least come across others who experience this.
**Hate hearing of others with this issue, I've been dealing with this since my early 30's now 50. started out with severe pain which would last 20 to 40 minutes with later episodes increasing in pain to finally passing out, which for me was a great thing for pain was totally gone when i came to. however I learned the hard way of once i feel this to get to the floor and crawl to bathroom. if not you may do as I did. I passed out hitting my head on footboard of bed, which required a trip to ER for stitches. I have found no treatment for this although I think hydration has something to do with it and maybe high blood pressure which I've dealt with my entire life. so my only words of wisdom is stay low to ground!