I am a guy in my 20s. Ever since high school, I have had a condition called chronic pelvic pain syndrome. It’s essentially a constant ache in the pelvic/bladder area, just the way some people have chronic back pain or headaches. In my case it started gradually and without apparent cause.

A hallmark of this condition is that the pain gets worse after orgasm. I have this symptom too; in fact, over the years it has worsened to the point where any sexual arousal (not just orgasm) can cause a flareup. This can include such minor things as seeing a racy picture, having an attractive girl brush up against me, or simply thinking about a girl I like. This is as bad as it sounds. A few seconds or minutes of pleasure can result in hours, days, or weeks of increased pain.

I’ve tried, without success, every pelvic pain treatment in the book, from special diets, to physical therapy/stretching/relaxation regimens, to pain medications, to an implanted nerve stimulator. I have seen the very best urologists, neurologists, anesthesiologists, rheumatologists, physical therapists, psychiatrists, etc. All they can tell is that I probably have some rare disorder or injury to my autonomic or central nervous system.

So, the only way I have found to keep my pain from spiraling is to strictly abstain from all sexual arousal. This means no more sex, foreplay, kissing (or ANY romantic contact with women), or masturbation. No looking at women in a way that might arouse me (this means absolutely no porn, or even seeing women in revealing clothing). When an attractive girl walks by me on the street, I often have to avert my gaze to avoid getting aroused. And the most difficult part: no sexual thoughts. When I break these rules, I usually sorely regret it. The last time I had sex, I was in bad pain for over 2 weeks. So, I have not had sex (or masturbated, etc) in a very long time. My libido is high, so this requires every last bit of willpower I have.

Proof/evidence: I have scanned a few excerpts from my medical records. Can post more if people are interested.

This condition causes me huge anguish. I feel I am in a mental prison, being starved emotionally. It’s tragic because before I got this condition, I was thriving in all aspects of my life and had huge ambitions that were cut short. I also went from having satisfying relationships with women, to hardly being able to date.

There are so many facets to this condition and its impact on my life, so rather than write everything out I’ll see what people want to know.

I’m putting this AMA out there because my rare condition and life situation may be of interest to some, and maybe some connections will be made that will someday help me or someone else.

EDIT: some FAQs:

  • I have tried acupuncture, unsuccessfully.
  • I am not considering chemical castration, because of the various side effects.
  • I do get nighttime/morningtime erections, but they do not cause as much pain as daytime erections. Don't know why. More here.

EDIT 2 @ 3 AM EST: Thank you so much for all the thoughtful messages. I am still reading them all and replying to as many as I can.

Comments: 2243 • Responses: 58  • Date: 

lhwang03202427 karma

OP, I actually have the same condition as you. It took me 5 years to get it treated properly, but I finally found a urologist and physical therapist who have been able to help me.

Here are some tips. I'm no doctor, but I've lived this condition since I was 22, and I'm now 29. The 5 years leading up to my proper diagnosis and treatment were some of the darkest of my life. But you can regain control of this condition (maybe not a "cure") but it is very manageable.

1.To get you started, I would recommend that you read "A Headache in the Pelvis," (http://www.amazon.com/Headache-Pelvis-New-Expanded-Understanding/dp/0972775552). This book was a real eye opener for me, and a bible in terms of treatment methodologies and understanding this condition.

  1. Familiarize yourself with the "Wise-Anderson Protocol" that is mentioned in the book.

  2. Find a urologist and mention this book. Apparently the authors of this book are a huge deal in the field of urology. Any decent doc should know who they are.

  3. Request a prescription for a "Pelvic Floor Physical Therapist." Most hospitals have them, and a good one will be able to help you out.

  4. See if you need an antidepressant of some sort. A lot of the pain and muscle tension associated with this condition is related to anxiety/depression. It's a nasty cycle--each one makes the other worse. You get anxious about your pain, which causes tension in your muscles, so on and so forth.

That's all I have for now. If you wanna PM and chat more, let me know.

Be strong, OP. your condition is treatable, and not as rare as your doctors may have led you to believe.

Edit 1: To whoever gave me Reddit gold, THANK YOU! The 20th was actually my 29th birthday, so it's much appreciated.

Edit 2: Wow, people. I am surprised (and glad) at the amount of interest this IAMA has generated. Thanks, OP for bringing this to people's attention. It's a unique and not-so-well known condition that should be addressed.

Edit 3: If you are suffering and have questions, PM me. I've already answered a few, and will try to help out as much as I can.

patient41738 karma

Thanks. I can see you know your stuff. I actually spent a week with Dr. Wise at his clinic in California. I tried his treatment protocol and it did not help me, though I know many people who were helped by it.

CodeBlu286 karma

*Disclaimer: Not a substitute for actual medical advice. Without a physical exam and a proper history it is hard to make a judgment.

Hey patient4. MD in training here. Not a urologist. But I'm into pain management and anesthesiology. I've actually seen a few clinical trials for pelvic pain syndrome. I got to work with this urologist in Switzerland who is publishing this study right now. I'd print this out and show it to your urologist. The only problem is that there hasn't been an RCT (randomized control trial), which is medical speak for sexy study that has great evidence backing it up (placebo vs. treatment). I can assure you that this is not always the case with RCT. http://www.ncbi.nlm.nih.gov/pubmed/23433012

In the acute sense, I am averse to alpha blockers for the sole reason that they suck and can really mess up your blood pressure. And I don't like that. Opioids in excess can actually cause a urinary retention and make it worse. I would drop the Vicodin. More inflammatory pain we're working with here, I'd actually discuss the option of steroids with your doctor, at a high dose, then taper it (Medrol Dosepak). See how that goes. You might be able to wean yourself off the steroids for weeks/months at a time. If you have positive effects from the steroids, you might be able to continue alternating taking them and not taking them for the purpose of being able to function. At least until a better treatment becomes available.

Good luck dude.

patient4289 karma

Thanks CodeBlu. I've tried TENS as well as percutaneous tibial nerve stimulation.

Agree about opioids. And alpha blockers didn't help.

You may be onto something about the steroids. The one time I tried a steroid (dexamethasone), I was able to be aroused without a flareup afterward. Maybe it was just a coincidence. I have a Medrol Dosepak and plan to try it again. But I have so much trepidation about trying these "experiments" because the pain can get really bad. It's like I have no room for error.

CodeBlu179 karma

Damn. The experiments suck, but hey, it's for SCIENCE! Here's my suggestion with the steroids at least. Day 1 dose hard in the morning, I mean 60 mg of Prednisone. Day 2 mid day, 2 hours after you eat lunch, take 5 mg of Dexamethasone. Don't do anything, on day 3 and just see how long this will last. Dexamethasone takes a longer time to be active, but it's half life is longer as well. I really think that you should be good until day 6.

As I'm sure you know, steroid use long term has some nasty side effects. Things like Cushing's type syndrome (moon face, thin skin, stretch marks, bla bla bla). They're very real and very annoying. Be cautious.

Here's to hoping for happy arousals for you!

patient4120 karma

Thanks for the suggestion and info! I appreciate it!

nuclearmonkey21716 karma

Wow! I rarely scan the IAmA subreddit and I can barely believe my eyes! I have been suffering from the same condition for the past 2 years (I am 25 now, the syndrome began when I was 23). I can completely sympathize with your sentiments about it being a dark place. At the peak of my condition I was in the darkest place I have ever been in, and it effects my life each and every day as the pain is constant, and never truly goes away.

As you seem to have found out, anything that makes your pelvis work hard can potentially flare your pain. This can be anything, such as peeing more than normal, any sexual activity (as you've mentioned), or making the muscles work hard. Here are things that have helped me get the pain under control.

  1. Cut out caffeine completely. It stimulated your bladder and even though you may not have to pee, you will feel like you do and constantly peeing with make the nerves in that area begin to act up.
  2. Cut out smoking. I've never quite figured out the cause, but whenever I smoked (weed, cigarettes or otherwise) my bladder became swollen, which caused the muscles in the area to tense up and flare.
  3. Drink very little alcohol, if at all. Similar to caffeine, alcohol will make you feel the urge to urinate a lot which stimulates the nerves in the area. I've found the affects of alcohol to be less drastic than caffeine so it has been possible to have a drink here and there, but only during times when I feel I am able to risk it.
  4. Similar to what lhwang0320 suggested, I just recently began pelvic floor PT. What they have told me is that as a very skinny guy, my posture is so terrible to the point where I basically use my butt to hold myself up. This puts a lot of strain on the muscles in the area. Improving posture and using your lower back as opposed to your pelvis to hold up your upper body up is immensely important.
  5. I haven't been able to avoid sex completely (I don't have the willpower) so I mostly accept the consequences as far as that is concerned. All I can say to that end is to be smart about it. Know when and where (which is real tough) and what you have going on so you can time things accordingly. For instance, if you know you need to be on the ball tomorrow, don't do anything that could jeapordize that today.
  6. As far as meds. I've taken Lyrica for almost the entirety of these two years and its help has been gradual if anything at all (so gradual its hard to tell if it helps). The problem with Lyrica is thats its really really expensive. What's helped me more is a muscle relaxer called Tizanidine (2mg) which I take at night. It makes me very tired but its affects have been very worth it.
  7. More generally, I can say just find something that you can do that will make you happy and take your mind off the pain. For me it was making music. Ideally it would be something you can do in your room that doesn't involve physical activity. It is crucial to have a creative in the darkest times. TV and movies never really did it for me, it needs to be something involved so you can really escape.

I hope these points help. Don't despair! These things take years to get under control but it will happen!

EDIT: sorry I fired off this response before reading many of the comments, you may already know all these things and more. I at least hope it helps to know you are not alone!

EDIT2: I totally forgot to mention that salty foods like french fries trigger my condition as well. Foods have been a real tough challenge to lock down but this is definitely the case for me. I've read different things for different people though

EDIT3: Thank you all for your (mostly) kind words and suggestions! I certainly didn't mean to steal any of OP's thunder but I do enjoy answering the questions. I rarely get to talk about this sort of thing. As lhwang0320 said anyone can message me if they need help with this, I'd love to chat more.

patient41014 karma

I can confirm from your post that you sound really similar to me. Might send you a message to compare notes further. Thanks for the comment!

PackinIt1650 karma

I just want to say on behalf of the guys on reddit:


patient4908 karma

I know. Thanks.

Eoin741822 karma

So how do you deal with a girl coming onto you? Do you let it happen, or do you try and dissuade her?

Also, /r/fiftyfifty sounds like much more of a gamble for you

patient4906 karma

I will dissuade her, and be nice about it, because often I do like the girl and would want to be with her otherwise.

wanderrlust186 karma

Have you ever had a girl that wanted you MORE after finding out that nothing sexual could happen between you guys?

Also, do you find yourself just trying to stay away from girls altogether (even in terms of just friendship), as to not risk "falling for them" or becoming attracted to them?

edit: So I asked because you could ironically probably get a lot of ass with that line. I have this weird fetish for hot war veterans in wheelchairs who are paralyzed from the waist down. I think the thought that I would have to really try to turn him on and the general struggle and potential victory of trying to get him hard is a turn on for girls. It's kind of like King Midas' touch. Turn everything to gold... but you can't enjoy it. I forgot where I was going with this...

But uh........ I guess other guys can use this tactic :/

patient4248 karma

Yes to the first question.

Yes to the second as well, though more in terms of avoiding physical attraction (not as much emotional). If I find a girl really arousing (e.g. because of her body or the way she dresses), I will often stay away from her. This also applies to certain settings, like clubbing or going to the beach. It sucks, but that's what I've learned to do over the years.

evenisto31 karma

Do you get it clear with people or are you hiding the reason behind this in order not to provoke funny looks or whatever else you might feel bad about? I'm not certain which kind of people you tend to surround yourself with, but I am in fact curious whether a girl hitting on you just gets dumped thinking you don't like her or leaves aware of the problem it might create (granted it isn't some random chick you just met a week ago, of course).

patient461 karma

I used to be very private about it. Now I am being a bit more open. If I have a real emotional connection with a girl I am more likely to tell her.

smalli668 karma

What do you do before you make an important decision then?

patient4659 karma

Clear my mind by exercising, eating, sleeping, going outdoors, etc.

Zementid337 karma

Fuck Chuck Norris,... OP is badass.

patient4230 karma

LOL :)

Audevive300 karma

How do you handle 'Wet Dreams"? Do you wake up in pain or is that the only way you can have any sexual thoughts?

patient4353 karma

Good question. Arousal during sleep (including wet dreams) does tend to cause a bit of a worsening of my pain, but not nearly as bad as sexual arousal when I'm awake.

Gravy-Leg__287 karma

Does this make you think your problem may have a psychological basis?

patient4323 karma

I saw several therapists (psychologists, psychiatrist, hypnotherapist, sex therapist) to explore this possibility. I just wish there was some cause we could identify, be it physical or psychological. But no one found any psychological issue. I also have no history of abuse, trauma, unusual/excessive sexual practices, etc.

The overlap between physical and psychological is blurry. Maybe it's in the brain but not under conscious control, like various neurological disorders.

Another consideration is that during sleep, the body's neurophysiology changes (i.e. different levels of neurotransmitters are released), so maybe sexual arousal during sleep has a different neurochemical effect.

EDIT: another quirky thing to note is that the amount of pain I get is related to how I get aroused. Visual arousal causes more pain than tactile arousal, which causes more pain than spontaneous arousal, which causes more pain than arousal during sleep.

After reading about the work of VS Ramachandran, I wonder if there is a way to trick my brain out of the pain response.

Batspiraat163 karma

So what about lucid dreaming? Might this be an option? I mean, if the pain is less when asleep...

patient4232 karma

That is a really interesting idea! Just looked it up. I knew that some people could do this, but I wasn't aware that there are books/websites on how to do it.

iamaredditer282 karma

Oh GOOD LORD. You're a tougher man than me. Think I would have had to end it all.

So are you like in tremendous pain with morning wood? Do you fap at all?

patient4350 karma

Erections during sleep are not as bad as daytime erections.

I don't masturbate or have sex anymore (though the temptation is very strong).

littleazndae55 karma

do you ever have to wake up because nighttime ones? (not wet dreams, just the natural ones because of the sleep cycle)

patient4156 karma

The pain often awakens me at night. But to answer your question specifically, it's interesting because during erection/arousal I feel fine. In fact my pain is reduced. Only after arousal is over does the pain start to worsen.

dekayge19 karma

If the pain is lessened when you're aroused, does taking Viagra or other medications designed for ED help, temporarily?

patient456 karma

Never tried Viagra. I can keep myself aroused pretty easily though. I avoid it because I pay the price afterward.

TenTypesofBread177 karma

I have a ridiculously controversial question.

What's the most radical treatment you have considered (e.g. chemical castration)?

Would you do it if you were guaranteed to decrease/remove the pain?

patient4250 karma

I can keep the pain somewhat under control with a combination of sexual abstinence and Vicodin when the pain gets bad. It still sucks, but I can do day-to-day activities. (When my pain was bad several years ago, this was not the case.) I have researched drugs that would lower libido, but they all have nasty side effects. I wouldn't do any treatment that is permanent/destructive, because there is a possibility that I will find a real cure/treatment someday.

just_drea72 karma

Have you tried, or are you on, antidepressants? Some of those will kill your libido.

patient4104 karma

I tried a few antidepressants but they did not reduce my libido (or help with my pain).

yourotherusername26 karma

Does the vicodin: stop the pain, lessen the pain, or make you not care about the pain?

I kinda get the impression that it lessens and makes you care less about the pain.

How do you feel on muscle relaxers, have you tried flexerol or similar?

When I had nerve pain, from a back injury, the vicodin didn't touch the pain, just my perception of it. The flexerall made the pain much more tolerable as it relaxed the muscles that were bearing down on the nerve.

Any MRIs to look for a pinched nerve?

patient452 karma

The vicodin lessens the pain.

I've tried oral baclofen and a few benzos. They don't do much.

MRI showed an lumbar disc bulge but no pinched nerve.

iamaredditer147 karma

Well I guess you are probably the only straight guy that hasn't been to gone wild or looked at nsfw pics.

Have you thought about becoming a priest? They could use more guys like you.

patient4174 karma

I try my best to avoid looking at any arousing pics.

I don't see myself becoming a priest/monk.

Willb3tray4food141 karma

Aside from sexual, are there any complications with other things like runners high or something along that line that could get your heart rate up and what not?

(sidenote- how careful are you on reddit in avoiding random boobs/sexy pics? Do you use enhancement suite filters?)

patient4198 karma

Very good question. Aside from the sexual and pain symptoms, pretty much all my sensations are normal. I still feel good when I laugh, have a good workout, good food, etc. Getting my heart rate up is not a problem and I can exercise.

I am VERY careful to avoid sexy pics. If a link even suggests possibly sexual content, I force myself to avoid it. It sucks, because sometimes there is something that may look really interesting, and you don't know before you click if it's going to be sexually arousing.

Willb3tray4food22 karma

Are there other medical cases similar to you? I have heard of conditions similar to this but it was usually due to messed up nervous system. Maybe find a solution? ( you deserve a medal or something as well!)

patient459 karma

There are other patients with pelvic pain (both male and female) who have varying degrees of worsening with sexual arousal and activity, but I'm the most extreme I'm aware of because of the hair-trigger sensitivity. Also I have high libido, which makes this harder to deal with.

Willb3tray4food25 karma

Did they have any cure/ improvement?

patient472 karma

One guy on another forum whose symptoms are similar to mine reported that he cured his condition with a Botox injection in his pelvic floor. I am considering that.

Willb3tray4food28 karma

Sounds risky, is there any medical info to back that up?

patient450 karma

There is, though it's a newer treatment:


Willb3tray4food39 karma

Be sure to consult experts and stuff. I really hope this works for you of you end up going through with it. Till then, stay strong!

patient432 karma


NoNameForSteve102 karma

Forgive me for asking an ignorant question, and I don't mean for this to come off as anything other than curious, as I've never heard of this before.

What would happen if you fapped, while in pain - like every day? Ever try the "over doing it method"? (For clarification: Fap tonight, pain starts to build, fap again a few hours later, fap the next day and carry on)

I feel for you. I was paralyzed for a while a few years ago, and still have nerve damage to this day. People don't believe you, people look at you funny/ask stupid shit for the sake of pissing you off/think you're making it up. Stay strong man!

patient4187 karma

Thanks. A couple of years into this condition, after I started abstaining, one urologist told me I was doing it wrong and that I needed to have sex or masturbate every other day. I did this for a couple of weeks despite the pain. It made me a lot worse and the pain stayed with me for months. I have not tried anything like that ever since.

shawmanic54 karma

How about yoga? Mula Bandha in particular. Probably very similar to the pelvic therapy approach but there might be subtle differences.

patient443 karma

Thanks, will check that out.

imagirlimagirl50 karma

Can you have a girlfriend without all the sexual bits (but including snuggling, forehead kissing, etcetera)?

patient4132 karma

I've been trying to find a way to make this work, but the problems I always run into are (1) one thing leads to another, (2) the mind wanders, and (3) even innocuous things like snuggling or forehead kissing can "feel" sexual. It is possible to be with a woman and do some things, but making it really satisfying is not always easy. At one point when my pain was really bad I avoided ALL intimacy with women, but now I am loosening the restrictions a bit and even tolerating some increase in pain because the "cure" sometimes feels as bad as the disease.

SmurfUnunoctium35 karma

So you actually do sexual things?

patient468 karma

Occasionally I cannot help it. I try to keep it nonsexual, like hugging, back massage, etc. My challenge is to have satisfying intimacy without crossing the line into sexual arousal. Last week I did this and got a bit too close and ended up arousing myself to the point where I got pain the next day.

kylsiu45 karma

You could try looking for an asexual woman?

patient477 karma

I don't know any asexual women, but I think there is value to the idea of finding a woman who is prudish or has low sex drive. (Still attractive, just not in a sexual way.)

gururyan44 karma


patient459 karma

I've tried many prescription meds. The only ones that significantly help are opioids, and I use them when the pain is really bad, but try to minimize use to avoid tolerance.

Malusifer37 karma

This will probably be buried and I know everyone likes to play internet doctor but have your ever tried Ketamine infusion therapy OP? My dad has chronic pelvic pain and it is one of the few things hes found that improves his quality of living.

patient423 karma

I haven't; will look into those.

pacific_north_fresh36 karma

When did you first notice this started happening? Had you been sexually active beforehand and all of a sudden a switch flipped, or can you link a specific event to it? Really sorry you have to deal with that, bro.

patient444 karma

Thanks. The pain started mildly one day, no specific trigger (did not start after sex), and it didn't bother me much at first. Only when it got more severe and I realized it was not going away on its own.

CrazyMaxxen33 karma

respect ++

seriously dude, do not give up, im going to come of as a jerk for saying this but sexual pleasure is awesome, and thats why you should not give up. this is probally really depressing but you should keep up hope.

patient441 karma

I agree with you 100%.

the_good_time_mouse30 karma

I have chronic pain syndrome in both hands, have had it for 6 years.

Every year, I got a little better, and now I'm actually interviewing for jobs and (gingerly) picking up my old hobbies (music) where I left off.

I hope that over time, your pain issues will lessen, as mine have.

patient422 karma


videocracy27 karma


patient450 karma

Thanks for the questions.

  • I've seen urologists, neurologists, anesthesiologists, rheumatologists, physical therapists, psychiatrists, and even a gastroenterologist/nutritionist even though I don't have GI symptoms but have concerns that diet could be a trigger.
  • I do keep hope alive that I could have a normal life, pain free. There are always new therapies to try, and medical breakthroughs do happen.
  • Yes, I used to be very optimistic and felt anything was possible. I still see light at the end of the tunnel, but day to day, I am more pessimistic.
  • I don't feel there's a mental health issue brewing, but stress/anxiety are definitely increased.

Messe779927 karma

This sounds like a terrible condition. What do you do when it comes to things like movies and television? Even commercials can have some sexually suggestive stuff. Do you abstain from these completely too?

patient447 karma

Yes, sexually suggestive stuff is everywhere. In general I avoid TV shows/movies/websites that are known to have sexually suggestive content. Even hearing or reading something sexually explicit can cause my pain to get worse. I'm only human, though, so every now and then I can't hold myself back. Sometimes I get away with it, sometimes I don't.

anon500521 karma

Hi Patient4,

This sounds a bit similar to prostatitis, I know it is not exactly the same, but what I want to say about it is that doctors still don't know the cause. But they have managed to cure many cases with high doses of different combinations of antibiotics -- even while not knowing whether bacteria is the cause. Also is it possible you have symptoms of cystitis?

If you have irritation in the bladder/urethra, I wonder if the same type of treatment that works with nonspecific prostatitis or cystitis might help you too.

patient428 karma

Some doctors also call it prostatitis/interstitial cystitis. They are all closely related conditions, possibly the same thing, no one knows yet. I have tried multiple antibiotics.

HumanInHope21 karma

I am truly sorry to hear your condition. I cannot imagine the amount of emotional turmoil you go through everyday and I commend your strength to carry on. I know chronic pain syndrome can be refractory. What treatments have you tried? Also where do you live? Have you tried going to reputed hospital or research centers?

patient440 karma

Thanks for the kind words!

I have been to top teaching hospitals and seen the most respected docs.

Recently I have been fascinated by the work of VS Ramachandran and wonder if a creative mind like his could figure out a way to cure me, but as far as I know he doesn't see patients.

iita-19 karma

My father was in chronic, debilitating pain for the last 10 years of his life. All of my sympathies and good luck in your endeavors to find a cure or at least a working medication.

What if a girl were to fall for you? How open are you about your condition in general? I imagine it's not like you wear a sign around your neck, but I don't know how you'd keep it a secret.

patient417 karma

Thanks. I have mostly avoided relationships with girls who like me. I've told some of them about the condition.

CiD770712 karma

How is something like this contracted typically? What may have caused you to become susceptible to it?

patient417 karma

For some people it starts during a period of high stress, for others after an injury/illness, and for some it just starts on its own. I don't know what made me susceptible.

artegos11 karma

man...I'm really sorry to hear about your condition. it does not sound fun at all. Without fapping, doesn't that build up just get excrutiating(sp) and hard to ignore? I mean...my god man!

I know for me, a few days without some type of release and its all I can think about. good luck man...hope you find that cure!

patient422 karma

Yes :(

Spooky_Electric10 karma

What have the doctors done to try and help??

Is there a medical procedure, like surgery, that they could maybe do??

This has to suck man. BIG TIME.

patient414 karma

Thanks for the sympathy. I have tried so many treatments. I have seen some great docs who really wanted to help. The most radical treatments i tried were injections into my bladder and an implanted nerve stimulator.

Some people get their prostate/bladder removed, but those surgeries have a poor track record.

ismellpeanuts9 karma

What is the pain feel like? Is it a stabbing/sharp pain, achy? Does it get worse when you sit down?

I have heard of this condition, obviously, but I never really thought about the fact that it would have an effect on sex. I am now imagining never being able to have again and feel like I need to leave work and go find my boyfriend..

I sympathize with you. I hope you find a cure!

patient415 karma

Yes, like an achy/burning feeling. Body position doesn't affect it.

Thanks for the good wishes!

RunicGuardian7 karma

Is the pain physiological or tied to your anxiety/heightened emotions during arousal?

patient416 karma

I don't know. Arousal is pleasurable, the way it always was. It's afterward that I pay the price.

The_Puntificator7 karma

I'm sure you have tried this, but I thought I would put this out there anyway. I have had problems with epididymitis and an irritated bladder for a long time now. The both seem to be linked, and one seems to compound the other. The first makes me feel like I have been hit in the nuts. And it dosn't stop, sometimes for weeks. The second makes my pelvic area hurt similar to what you described, and I have to urinate waaay more than what is really needed. But I also sometimes have brief, intense pain after masturbation. To my point. It seems that the irritated bladder was caused by acid in my diet, and I am convinced that the bladder issue somehow affected me and caused the flairs of epididymitis. I cut anything with acid out, and after a while I had no pain whatsoever. I was kind of shocked, because I had not realized it was constant before it was gone!
So no alcohol at all, juice,coffee,soda,tomatoe of any kind, vinager, etc. Was this kind of comprahensive ban part of the diatery plan you have tried?

patient47 karma

Yes, tried eliminating acid. Didn't notice any effect.

retoupin7 karma

Do you have nocturnal emissions? If so, do they acerbate your condition at all? In what way?

patient45 karma

Yes, see here in the thread.

littleazndae6 karma

how do you feel about eventually wanting to have children?

patient418 karma

Maybe eventually but for now I don't want to take on more responsibility/stress.

pixelbits3 karma

Has this severed any close relationships with friends? Are you still able to go out often without experiencing the pain?

patient411 karma

I am quite sociable by nature, but have socialized less since getting this condition because (1) it's not as much fun to go out when I'm in pain, (2) it's much harder to find people whom I can truly relate to and activities we can do together, and (3) a lot of my time is spent researching and trying different treatments.

Shaitan233 karma

I'm assuming this means you can not masturbate as it will hurt too much. HOW THE FUCK DO YOU LIVE?

patient47 karma

The hope that things will be better someday.

Kimsatyyello2 karma

So do you have mean doctors too? I feel like they should be more sympathetic to your condition and help with pain medication. Not all the time but know what your facing and help you with pain occasionally. It seems like if they can't see it, it doesn't matter.

patient46 karma

I've only had one experience with a doctor who was rude to me. Maybe he was insecure. Most doctors are actually very sympathetic.

cuntpuncherexpress2 karma

Is there any hope that it will go away or at least you can overcome it?

patient46 karma

I do have hope. Maybe someone I will receive a proper diagnosis someday, or try a treatment that works. Or maybe I will wake up one day and the pain will be gone. Has happened for some people.

villitriex2 karma

What do you do if arousal occurs? Change what's on your mind?

patient47 karma

Yes, I distract myself, talk to a friend, play video games, go play sports, have a meal, etc. I can't will away sexual desire, but I can distract myself to some degree.

masterburn921 karma

Time to fap just goes to show you can never take it for granted. Feel for you bro.

patient42 karma


polypythates1 karma

Has writing this AMA brought back the pain, along with the replies?

patient42 karma

No, the pain is at its usual level.

jpop23mn1 karma

Is it contagious?

patient42 karma


MauledByManbearpig1 karma

Have you ever been able to use any sort of pain medication to nullify the condition? If so, did you ever develop an addiction?

patient42 karma

Opioids (e.g. Vicodin, OxyContin) help but I try to use them as rarely as possible. No issues with addiction.