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injured! high flow priapism, now ED

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  • injured! high flow priapism, now ED

    Hello there, I'm glad to find this forum, I'm hoping someone here might have some similar experience [well, I don't wish it on anyone!] and/or knowledge related to my situation. I've been reading all I can online, picking things apart as best I can, going a LITTLE crazy [and driving my girl crazy too!] while I.... wait.

    a little over a month ago, I was out skateboarding alone late at night as I've been doing for a while now, getting back into it after many years, and I had an accident; I caught the deck vertically in the groin . it hit me behind the scrotum, slightly off-center. If you can visualize a skateboard deck, they are thin, and after a while as you grind them against the concrete, they become tapered, actually kinda sharp. .. SO I immediately drop to ground, the whole groin feels like its on fire, i quickly checked my testicles and penis for damage, they are fine, theres no broken skin at the perineum, I guess my jeans helped a little. so intense pain for about 10 minutes, i hobble home and ice it immediately for a while. the pain subsides a great deal so i took some aspirin and went to bed.

    early the next morning, I wake up with a semi, it's usually harder than this, so I get worried, I go to the bathroom and try to get a full erection, I get maybe 90% and at the moment, I guess I was satisfied with this, it still works etc. so go back to sleep and wake up with semi again, and this lasts for the next 2 1/2 weeks.

    the erection was only around 40-50% at most, uncomfortable in jeans but manageable,, I read up on priapism- and self-diagnosed it as a HIgh-flow priapism, in which the penis is still getting plenty of oxygen-rich blood, so there is very little risk of Corporal tissue damage..

    anyways, I start to get worried after 2 days- people convince me to go to the ER. so I went in, they examined my penis, and the perineum and basically confirmed what I had thought. Rest, Ice, compression etc. there is very little pain at this point n the perineum, and no pain in the penis at all.

    At this point, I am not even thinking about ED, I am basically AVOIDing erections and letting things rest/ heal.. So then about a week later, I decide to give it a go with my girlfriend. very dissapointing, maybe 60-70% full, not hard enough for penetration really. I freak the F--K out, go BACK to the ER and am basically told, be patient, these things take time, it's not the BAD kind of priapism, etc.

    so I dive into work, trying not to think about it, and generally feel pretty optimistic about things. I went out of town for work and everything, just being as normal as I can, kind of joking about it with my friends... by the time I got back from out of town, the erection had begun to subside, got thinner basically at first, then shorter, which I thought was odd, as it would seem like it would go down more proportionately. anyways, still major ED.

    can maybe get to 40% on a good try, so I go to the Urologist and he gives me Viagra. I tried it twice, 50mg each time. I really don't like the way it makes me feel, flush, hot, and also, the 2nd time, I got tracers in my vision, which really turned me off of it. a LITTLE improvement, nothing to write home about. So I call the Dr, and get the whole 'be patient' thing from him too. very freaked out at this point- I have had a few 'breakdowns' where Ive gotten so worked up over this, and been reading and obsessing and talking about it non-stop. It's very hard not to react this way for me as I like to be pro-active and not sit and wait. It has caused some turmoil in my relationship, as my girl is very sensitive to my moods and it has brought her down too. I try to be strong and positive, but I am in limbo right now, good days and bad days mentally. thank God for my girlfriend's love and support. I had no idea how fragile I could be emotionally or mentally.


    at this point, my situation is complicated as I am uninsured. I payed out of pocket for the Dr. apptmt, but I know going any further with testing, etc, is gonna be more than I can swallow. So I'm trying to get coverage now, fingers crossed.


    I feel like the priapism was an issue, but now I am thinking of it more like a symptom for the underlying problem.
    my penis is generally around 5-10% when standing or sitting upright, I can get very close to the flaccid state I remember by lying on my back and folding my legs up elevated, which leads me to believe I am still experiencing priapism. I have a lowered libido, and stimulation is not very spontaneous, takes physical stimulation to get going. I can still reach orgasm and ejaculate- tho it takes alot more effort it seems and theres not much velocity behind the ejaculation. I think the main point of impact was the Ischiocavernosus on my right side [this is the muscle that covers the penis crus and is used in erection to pinch off the veins a bit] I obviously damaged an artery, but what Im wondering is, could there be nerve damage that is preventing my Corpora from relaxing all the way or could simply damaging that ischiocavernosus lead to such diminished erection. it has a soft lump on it where it was hit, that is slightly sore still to the hard touch. another idea I have is maybe the vein on that side isnt closing and that leads to not enough force to fully close of all the other veins in the corpora....

    i have noticed the superficial dorsal vein and the circumflex veins in my penis are much more pronounced now than they ever were. .. not sure what that means. the penis is such a complicated thing.


    sorry for the long introduction, but I am hoping someone can empathize or relate, or perhaps find my experiences uselful in their own path to recovery.



    O btw, I am 31 years old, relatively healthy etc.

  • #2
    Anxiety is the most common cause of ed and you have it in spades.
    Of course you may or may not have physical issues as well. Do you have any urination issues?

    Comment


    • #3
      Hi, thanks for reading! yes I know. it's a total headtrip because normally I feel so 'in tune' with it and it's very hard to imagine not having conscious control so to speak.. aside from cold swimming pool etc. I've been with my girl 5 years so I feel like like it's quite improbable that performance anxiety is playing much role here. It seems more like blood supply/ return issue.

      no problem with urination, but I have noticed a change in the other, ie it seems i cant relax things as much when on the toilet, requires more effort. Ive read about pelvic tension and trying to learn to relax it. but still, it doesnt seem like muscle tension could be the main culprit here.

      Comment


      • #4
        Pegasus wasn't referring to general performance anxiety, he was referring to a more acute case of anxiety related to your injury. Two months ago you would have had absolutely no anxiety about getting an erection or having sex. Now, after an injury which has left you wondering if you are still able to function, you do face a huge amount of anxiety about it. Just the thought of getting an erection, or any other related thought, ie checking out a beautiful woman, or intimate contact with your girlfriend is likely to have a huge suppressing effect.

        If it is still sore to the touch the tissue is still healing. The healing process can take months to finish. Ice, heat, massage, compression should all help. Your doctors have told you to be patient, if they felt that the issue was serious and required immediate intervention they would have told you so. If you disagree with their diagnosis and treatment, go get a second opinion. Putting your mind at ease is worth the expense.

        I don't have personal experience with Viagra or other ED drugs so I hope that someone with greater knowledge chimes in, but it is my understanding that the more anxiety is the cause of ED the less effective those drugs are. If you believe there is something wrong with your penis and that you are unable to achieve an erection, you won't. Any morning wood/difference in semi erection level?
        Initial(9-1-11): BPEL: 7.25", BPSFL: 7.75", EG: 4.75", BEG: 5.25", BPFL: ~5.0", FG: ~4.0"
        Current(7-1-16): BPEL: 8.375", BPSFL: 8.75", EG: 5.375", BEG: 5.875", BPFL: ~6.625", FG: ~4.75"

        Realistic Goal: BPEL: 8.5", EG: 5.5"
        Idealistic Goal: BPEL: 9.0", EG: 6.0", BPFL: 7.0", FL: 5.0"

        Comment


        • #5
          There is the possibility of a pelvic floor injury. but anxiety is an issue.
          Try this ,sit on a tennis ball or basketball and carefully massage your perineum area. You should not use your full weight at first. Do this only if you think the initial injury is healed and you are dealing eith adhesions etc.

          Comment


          • #6
            thanks for the advises guys.

            "If it is still sore to the touch the tissue is still healing. The healing process can take months to finish. Ice, heat, massage, compression should all help. Your doctors have told you to be patient, if they felt that the issue was serious and required immediate intervention they would have told you so. If you disagree with their diagnosis and treatment, go get a second opinion. Putting your mind at ease is worth the expense."

            definitely, I don't think there is anything urgent about it, except my want for resolution. it's still sore if i massage the impact area, I think I'm going to leave that alone, theres a soft lump there, that seems to get harder when I try to get an erection. I am almost convinced this is related to my right cavernosal artery- the blood is being misdirected, probably why it seems to swell with the added velocity of erection response.

            my plan of attack for the last 2 weeks is try to get improvement each day, if nothing else, to get blood flowing in there. typically not masturbate till orgasm but just massage sort of. but that plan may be hurting the blood vessel by re-opening the wound or something. I've noticed after a really intense attempt at erection, my priapism comes back more than it was before, so it stands to reason. right now its hanging around 15-20%, where I was down to maybe 5-10% a week ago-

            so new plan is to not mess with it for a week, do pelvic relaxation techniques and stretch maybe some yoga/ swimming. I do worry about maintenance of the soft-tissue in the cavernosa, but I think they'll be OK as long there's oxygen.

            the ideal situation is the fistula [hole in my artery] heals on it's own, and the velocity returns as such to overcome the threshold of erection again. but Im preparing for surgery mentally and as much as i can financially. its been 5 wks since and it seems like if the fistula was going to heal properly, it would have by now, but It seems like it has been trying.

            its uncomfortable for me to even sit at a chair for a length of time- so yeah I think i still have a ways to go. not ready for the tennis ball yet LOL but thanks for the suggestion.

            Ill keep u posted, but if anyone thinks of anything else, Im all ears! gonna try to get back to work and take my mind off things again, I have really neglected work lately! ugh..

            cheers

            Comment


            • #7
              Self-diagnosis is prone to error and may be potentially dangerous if inappropriate decisions are made on the basis of a misdiagnosis.[1] Because of the risks, self-diagnosis is officially discouraged by governments,[1] physicians, and patient care organizations. Even physicians are discouraged from engaging in self-diagnosis,[2] because doctors too make mistakes in diagnosing themselves.[3] If the self-diagnosis is wrong, then the misdiagnosis can result in improper health care, including wrong treatments and lack of care for serious conditions.[4]

              You have had two medical professionals look into your case, both of which weren't alarmed enough to order further testing or refer you to a specialist. I would strongly suggest seeing a urologist and having them run a battery of tests. You clearly have anxiety over this issue, anxiety induced ED is very common and right now it is impossible to determine how much of your ED is being caused by anxiety and how much is a physical condition. Having a definitive answer from a urologist is well worth the financial hardship it would entail. This is consuming your life and is not healthy for you or your relationship. As to you having a arteriovenous fistula, I highly doubt it for multiple reasons. Firstly, having such a fistula wouldn't have high flow priapism as a symptom. Secondly, the trauma and consequent damage required would have made your 90% erection the morning after the incident impossible. Any other form of fistula doesn't make sense. If your artery was bleeding out you would have sever bruising or a hematoma(bleeding into an inclosed space) develop; again, those seem unlikely though a hematoma is possible and they take time for the hard clotted blood to fully disappear.

              Seeing a urologist, even at out of pocket expense, could do wonders to setting your mind at ease.
              Initial(9-1-11): BPEL: 7.25", BPSFL: 7.75", EG: 4.75", BEG: 5.25", BPFL: ~5.0", FG: ~4.0"
              Current(7-1-16): BPEL: 8.375", BPSFL: 8.75", EG: 5.375", BEG: 5.875", BPFL: ~6.625", FG: ~4.75"

              Realistic Goal: BPEL: 8.5", EG: 5.5"
              Idealistic Goal: BPEL: 9.0", EG: 6.0", BPFL: 7.0", FL: 5.0"

              Comment


              • #8
                yes, thanks zman, I think I have a clear approach to this now in mind. the worry, anxiety, seems to come and go in waves now. sometimes you're sitting there keeping busy and it just comes over you and it takes a few to regain your focus. I read about the horrible things that happen to people everyday in the news and it makes me feel like a chump for feeling so sorry for myself you know, it could be a million times worse.

                i think for me the reading and trying to decipher the symptoms etc has been therapeutic at times, but its a double edged sword and after certain reads my worry level has skyrocketed. so my next step is to actually GET an ultrasound. it's been 3 days since I have stimulated myself, and the priapism is definitely subsiding again as I expected, so this is perhaps a good thing.

                "As to you having a arteriovenous fistula, I highly doubt it for multiple reasons. Firstly, having such a fistula wouldn't have high flow priapism as a symptom. Secondly, the trauma and consequent damage required would have made your 90% erection the morning after the incident impossible. Any other form of fistula doesn't make sense. If your artery was bleeding out you would have sever bruising or a hematoma(bleeding into an inclosed space) develop; again, those seem unlikely though a hematoma is possible and they take time for the hard clotted blood to fully disappear."

                well the way I was thinking about it, it could be short-circuiting straight to the cavernosum, then draining straight out the veins, causing the priapism, the thing is dont know/ understand is- if that were so, wouldnt i still be able to get fully erect? or does having the blood go thru the proper channel, the nerve-controlled cavernosal artery, fill the spongy tissue in a different way somehow, that enables the veins to be pinched off, as in a normal erection, causing the overall pressure to rise past a certain 'threshold'. there is a physical resistance that the artery and the corpora and sheath all have, and thinking of it like a tire tube, if theres not enough pressure, you couldnt get the tissue to stretch as a result of its material resistance.

                as for something visible thru the skin, bruising etc, if the fistula is in the corporal tissue, in the penis crus, that might make it hard to see, as its under a layer of muscle as well. as i understand it the artery comes into the penis crus at the top side, between it and your pubic bone.

                the clot theory sounds like it could be viable as well, and from what I have read, a good clot can take a while to fully dissolve.

                anyways- my next step is get a good ultrasound asap, and go from there. I was denied insurance coverage I was as honest as possible on the application, as I figured theyll find out about my Dr visits thus-far anyway, so not way surprised, but bummed nonetheless.

                so ill pay outta pocket for that and see where Im at, then I may try the high-risk pool If they feel I need an angiogram or something, I think those tests are quite expensive. Ive also heard about "medical discount programs" which ehhh sound maybe like scams?? i dunno. more reading reading reading to do.

                thanks again for the advice

                Comment


                • #9
                  update: i had a bad night last thursday, kind of freaked out. went to a new uro friday morning and was given totally different advice. DONT try to stimulate myself and DONT take viagra! i was like whaaat? the dr. said let it rest completely and it could take months to heal. this was the opposite of what I had heard before. he perscribed pentoxyfilline (sp?) or "trental" and told me to start taking vitamin E, in an effort to prevent scarring, as i still have firm corpora.. this kind of thing is very frustrating, different advises from different docs. ugh.

                  anyways- after a couple days on the pentox i noticed my penis was getting softer when flaccid, not 100% normal still but better than it was. i still have hope that if there was any scarring done in my 2 weeks of partial erection, it can heal up. there have been studies where pentox and E supplements together actually reduced scarring as well as prevented progression o scarring. so thats good, but I was confused as to why, if I had a high- flow arterial priapism, that has gone down remarkably, I would be at risk for scarring? anyways whatever, it cant hurt.

                  so "months" hmm.. if it were that simple, I could live with that, but the fact is, I had ED immediately after the accident, not just now after the priapism. so I still wanna dig deeper. I am going to go see Dr Tom Lue at UCSF as soon as I can, as I feel like i anybody has something more concrete to tell me a this point, its him. I guess he actually does his own US's so thats a definite plus.

                  the only progress i think ive made in 3 weeks is that I can get aroused alot easier now than I could then. now I can arouse myself mentally whereas before it took porn and lots of manual stimulation. so thats progress. also, I went to a hottub and go nude with my girl and couldnt stopmmyself from getting a constant semi. it felt like it wanted to go all the way, but i didnt push it.. i dont think it could anyways. its nice to feel that kind of stimulAtion tho..

                  btw, ive been reading a bit at the "hard flaccid" forum, alot of those guys have extra pronounced superficial dorsal veins since having the HF. I have one too now, since the priapism went down. a huge vein- there most of the time, not all the time. also, the circumflex veins on the right side of my penis are bigger than ever before.. weird stuff. the arteries I can see near the surface have gotten darker since all this too. i wonder what he comnection is??

                  thanks for reading, best luck to all ed sufferers out there. any hints or similar experience would be great to hear.

                  Comment


                  • #10
                    um question: I just noticed this actually, kind of weird- thinking about the possibility of nerve damage. I cant feel ICE on the sides of my penis, around the middle of the shaft! is this in any way normal?? I can't tell that its cold. as i get closer to the head or the base, the feeling comes in a bit, but for 2/3 of my shaft, no temperature perception. the top is a little better. I can feel pressure and pinching but not much else. wtf. this is nuts. anybody?

                    Comment


                    • #11
                      Originally posted by boarded View Post
                      um question: I just noticed this actually, kind of weird- thinking about the possibility of nerve damage. I cant feel ICE on the sides of my penis, around the middle of the shaft! is this in any way normal?? I can't tell that its cold. as i get closer to the head or the base, the feeling comes in a bit, but for 2/3 of my shaft, no temperature perception. the top is a little better. I can feel pressure and pinching but not much else. wtf. this is nuts. anybody?
                      I'm confused. Do you have hard flaccid? Do you have a priapism? What exactly have you actually been tested for and DIAGNOSED with by a doctor? We have people on the HF forum who got hard flaccid after similar accidents to yours, but it sounds like you have been trying to diagnose yourself.

                      If you do indeed have hard flaccid, you don't need to worry about scarring or taking vitamin E or any of that crap because hard flaccid is nothing more than the smooth muscles of the penis being constricted. This is a reaction to damage in muscles nearby in the perineum, likely the Ischiocavernosus muscle for you. It can be fixed with pelvic floor physical therapy. That's the only advice I have to offer. It works.
                      Last edited by obitoo; 10-27-2011, 08:05 AM.

                      Comment


                      • #12
                        Try some omega 3 fish oil to help healing and some l-arginine for some blood flow.

                        Comment


                        • #13
                          Let it rest for a while and recover. It will take sometime. If you are really horny and need sex, it will come up.

                          Comment


                          • #14
                            I'm confused. Do you have hard flaccid? Do you have a priapism? What exactly have you actually been tested for and DIAGNOSED with by a doctor? We have people on the HF forum who got hard flaccid after similar accidents to yours, but it sounds like you have been trying to diagnose yourself.

                            If you do indeed have hard flaccid, you don't need to worry about scarring or taking vitamin E or any of that crap because hard flaccid is nothing more than the smooth muscles of the penis being constricted. This is a reaction to damage in muscles nearby in the perineum, likely the Ischiocavernosus muscle for you. It can be fixed with pelvic floor physical therapy. That's the only advice I have to offer. It works.
                            Hi, thanks for the reply. I have seen around 5-6 doctors throughout the course of all this. 2 ER visits while half-erect, and 2 different Urologists after return to a *mostly* flaccid state. was diagnosed as having a high-flow priapism based on the trauma and appearance/ feel. Unfortunately, nothing can conclusively prove that diagnosis but a blood-gas analysis/ ultrasound which was not done at either visit.

                            I went out of town for work, by the time I came back, the erection had largely subsided. At the first uro visit I was very much in a 'hard flaccid' state, in my opinion.. it was pretty stiff, stiff enough to where it wouldn't lie down when I did. This guy tried to compress the tissue, to no effect, and told me it was simply residual swelling, and should go down soon. He also hypothesized that this 'swelling' was the reason I couldn't get it up, even though I told him that I hadn't SINCE the accident. He prescribed Viagra and told me to be very patient, and would not do any further testing, as it wouldn't change the treatment plan, in any event. Pretty cold.

                            So needless to say I sought a 2nd opinion, and now have sought a third. Still waiting for that appointment. The 2nd uro I saw was more proactive, I posted about this stuff earlier.. anyways, they both suggested Dr. Lue in SF so that's where I am headed next.

                            In the meantime- the stiffness comes and goes, in the flaccid state. Though I will say, even at its most supple, it's still not quite what I remember before all of this. But it has improved a bit. The right corpora was larger and more firm than the left for a couple weeks, that's since evened out. I have NO idea what it all means. If I find that it's stiff, a little gentle massage seems to relax it again. I've been getting as erect as I can each day or so [skipped a day or 2 here and there]

                            -One thing though- and it really bothers me for some reason- after a good 20-30 minute try, my corporal tissues will be pretty tender to the touch after it goes back to flaccid. like it's still a little rigid, and if i tap it or move it too quickly I feel a bit of soreness, like muscle soreness. I have no idea what that could be, first thing that comes to mind is scar tissue. I am not rough at all with him, very very gentle. I've never done any PE excercises or anything like that, never had a sore penis like this before. Also- I seem to have developed a very subtle S-curve. honestly I don't care as long as I can get hard again.. and, apparently, if that's indicative of Peyronie's, I'm already taking the meds that they prescribe for it.

                            I've been taking Pentoxifylline 1200mg /day, L-Arginine 2G/ day, Fish Oil 2G/day, a multivit, E 400IU, C, B-complex, and recently added Nattokinase [expensive!] and a little Viagra every other day or so. just doing whatever I can trying to cover all the bases I guess. I have serious doubts that any of this is actually *helping* anything but it makes me feel proactive or something while I wait for some answers. My erection can get pretty full these days, MAAAYbe 70%, but still shy of being able to have sex. It stays pretty floppy, not rigid enough at all. I'm worried that all signs point to corporal fibrosis- but the fact that I am not getting morning wood points to bloodflow still, trying to keep my head until I KNOW something.

                            yes you're right I have done ALOT of self diagnosing/ guessing, but after realizing how little guidance there is for me with these Dr's, that's all I've had to go on. I've never been in a position like this.

                            Once I fiugure out why I can't get it up, I will certainly work on any pelvic floor issues that remain. It seems like it's very likely I have constant tension- sitting for a while is uncomfortable, restricted feeling on the toilet, etc. thanks for the advice, and that forum. I tried to join, but never heard back BTW.

                            Comment


                            • #15
                              I should add a little to the hard/flaccid issue. it seems like the corporal tissue literally has a mind of its own. I can lie back and relax, and the tissue will get very very soft, almost *too soft*, then a minute later, after maybe bending it to one side, the muscle seems to involuntarily contract, and can get very stiff, not shrink up really, just harden, then, 30 seconds later, back to soft. I can manage to repeat this numerous times while laying back in a relaxed posture. I have no idea what is going on. it's like the nerves are firing like crazy, at the wrong times. I should add also that sexual stimulation doesn't factor into this mechanism for me. in the stiff state, it can be sore to palpation. when soft, its not at all sore.

                              Last nite, something really strange happened- I went to bed and all of a sudden my entire penis spontaneously became stiff and sore [flaccid sized], it almost felt as if it was 'thawing out' or something, like if you've been outside in the cold too long, then run your fingers under water feeling. kind of scary. I was afraid to sleep, but it went down after about 10 minutes. This has never happened before.

                              also, i don't know if it's related, but my glans is slightly cool to the palm of my hand these past few days. this could be normal though, never thought about my penis this much before lol.

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