Discussions By Condition: I cannot get a diagnosis.

ED, Please Help

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • February 4, 2008
  • 10:01 PM

I'm a thirty year old male who has been experiencing ED for nine years. The situation has gotten progressively worse starting about three years ago. Now, I am generally unable to get a erection. I have seen some of the best urologists in the country to no avail. Following extensive blood tests for hormone levels, MRIs, CT Scans, Doppler studies, RigiScan studies, and nerve studies, I still have no diagnosis. The problem is not psychological, so please do not suggest that it is. Part of the difficulty I'm having is in proving that there is something physically wrong with me, because it is easiest for a doctor to say that this is all in my head. In fact, five days ago my urologist performed a Doppler study on me, complete with the injection to induce erection, and it failed to create an erection for the first thirty-five minutes. After that point, a weak erection was sustained. The urologist said there is definitely something physically wrong, but he also not able to make a diagnosis. Is there anyone out there who can help me? These last three years have been miserable for me. I've actually lost my will to live.

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  • It sounds like they did a thorough work up, but not thorough enough to give you an answer. There must be something that they haven't thought of yet. They probably screened for diabetes or pre-metabolic syndrome, sickle cell or thalassemia (if applicable), low testosterone, low thyroid, high thyroid, adrenal dysfunction, prolactin excess, tabes dorsalis, intervertebral disc disease, autonomic nervous dysfunction, high blood pressure, vasculitis, veno-occlusive disease, multiple sclerosis and other nervous diseases, and drug side effects if you are on any medications. There are probably more things that aren't listed above. Is there any way you can get a second opinion from another urologist- maybe someone who subspecializes in ED?I am sorry you are going through this.Remember that you are not your illness.
    Anonymous 42789 Replies
    • February 5, 2008
    • 07:59 AM
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  • Thank you for the reply. It means a lot to me. In response to your question about a second opinion, I've seen three urologists in the my local area, all of whom made weak attempts to help but were more interested in passing the buck to another urologist, blaming psychological causes, and admitting that they don't specialize in treating ED in ways other than offering the usual medications that don't really help my situation anyway. I've also seen a psychologist locally, two urologists hundreds of miles away who specialize in treating ED, one of whom is world-renowned in that area, and three neurologists, one of whom performed an extremely rare nerve-conduction and reflex study on the area (including an extensive bulbocavernosus reflex test, which he said showed adequate signal).The urologist who most specializes in this condition performed a Doppler study himself and noted that my response to the enzyme that causes erection was not normal at all, although a very weak erection was achieved. However, he also said that my blood vessels looked good, and that he believes that while there is something wrong, he is not sure what it is. I can tell you that I have had at least the following work-ups out of the list you provided: diabetes, low testosterone, low thyroid, high thyroid, prolactin excess, intervertebral disc disease (not sure...), autonomic nervous dysfunction, high blood pressure, and multiple sclerosis and other nervouse diseases. I'm not taking any medications and never have. I've never had surgery other than a tonsillectomy, and am of great wait and otherwise in great shape for my age. I can tell you that in 1999, I noticed that my erections had become ever-so-slightly weaker, but it was nothing of concern to me at the time. The problem increased in earnest in 2005. I specifically remember having normal, good intercourse with someone on that one particular night. It lasted for perhaps an hour or two, but I did not climax on purpose because we had no birth control. I don't believe I injured myself, but it seems that I may have. I woke up the next morning, again with a very strong erection. That was the last time I remember having a normal erection. Since then over the past three years, they have progressively gotten weaker, always with longer, specific periods of stable function followed by a day following which it is clear to me that my sensation and functionality has declined. In fact, I believe that an almost four-hour erection I had following my last Doppler study has further worsened my condition.Other symptoms include a very slight curveture to one side when erect. This was never present until about two years ago. But, no, I do not have Peyronie's disease. We've checked for that. I've also noticed that the overall girth of my penis, particularly at the base, has increased. It's almost as though I've stretched myself out somehow and that's the reason that I can no longer achieve a firm erection. There's not enough blood to fill it, or I've somehow damanged the functionality.Based on the way this is progressing and the symptoms I'm showing, I believe that there is in fact something wrong with my blood vessels or my corpus cavernosa. I'm wondering if there is such a thing as a tissue specialist, or a circulatory system specialist, instead of a urologist, who might be able to give a diagnosis. I apologize for the length of this posting. Do you have other thoughts for me based on this additional information?
    Anonymous 42789 Replies
    • February 6, 2008
    • 07:43 PM
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  • No other thoughts except to tell you to trust your gut. It's your body and it sounds like you have already been through the ringer here going to all of those different doctors and not getting any answers at all.Your theory sounds pretty plausible. I'm not sure what kind of doctor would be able to investigate your theories.Does anyone else have any thoughts on who would be a suitable doctor to approach? The last thing you need is yet another doctor who can't figure it out.By the way, I hardly ever watch Oprah, but on on of her Dr. Oz shows (for men) they said that it is possible to break your penis. Have they ruled that one out, too?
    Anonymous 42789 Replies
    • February 6, 2008
    • 11:32 PM
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  • Perhaps a Preventative (new type of doctor) doctor may help. They seem to want to check dozens and dozens of hormone levels and glands that other doctors don't. Perhaps you got a really bad case of "Blue Balls" from that one experience... Good luck.
    Monsterlove 2921 Replies
    • February 7, 2008
    • 02:52 AM
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  • It is possible to break your penis. But the literature I've read suggests that when this happens, you know it happens, and you will get yourself to the emergency room right away. I've never had such a break, only erections that have been sustained long enough to cause concern. But the tissue death associated with priapism (the name of the condition of an erection that fields to subside) does not seem to be a symptom of mine either. However, as this happened following my last Doppler study, and caused my condition to worsen slightly (it's even softer now), I can't help but think there is some correlation here, whether it's to overuse or overly-long erections.As for the electromagnetic field sensitivity, I do carry a cell phone, but I've been carrying it since 2003, and remember I first noticed the very early stages of this problem in late 1998/early 1999. At that time I didn't carry a cell phone, lived near no power lines or transmission towers, and do not use a computer any more than anyone else out there. Yeah, I've been through the ringer, and I'm really losing hope on this one. I haven't lived normally for three years because of this, and it's really pushing me to a breaking point. Other ideas? Others who have experienced this? I would give anything I can to cure it. I don't really feel like a normal human when dealing with this condition.
    Anonymous 42789 Replies
    • February 7, 2008
    • 02:55 AM
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  • I think you should trust your gut and go with an investigation into either a vascular or corpus cavernosa cause of your problem. I'm not sure who the specialist would be. There are vascular surgeons, but they deal more with large vessel disease and yours would be more of a peripheral vascular issue, plus it certainly does not sound like a surgical problem...Then there's rheumatologists, who might help diagnose a vasculitis, but there are other things that could be wrong with the blood vessels besides just inflammation. Rheum may be a good place to start, or perhaps your primary could suggest a more appropriate specialist.I'm sorry you are losing hope. Please try to hang in there. There has to be an explanation for this, it's just a matter of finding the correct answer. I don't know if this helps (because my symptoms were just a profound fatigue and headaches which is obviously not the same as your concerns), but it took me 8 years to get a correct diagnosis. I had lost all hope too, and thought I was going to end up in a motorized wheelchair. Last February, as I was sitting in the phlebotomy chair getting the tests that would ultimately diagnose me drawn, I scoffed and said "these are all going to come back negative too, why bother?" I was tired of doctors and very cynical that anyone would ever be able to figure out why I was deteriorating.The phlebotomist, who had done dozens and dozens of previous draws on me, was more hopeful, and ultimately she was right.I think you will get an answer if you keep looking. I know you and your friend are both tired of running from doctor to doctor, and sometimes you do need a break from it, but I hope that you'll eventually keep looking.Most importantly, please don't think that your problem defines you as a person or a man. It doesn't. I know there's a lot of societal pressure, but that's all a bit hyped up, and dysfunctional. You stated that you don't feel normal, but you indeed are (normal people have problems). I don't know you obviously, but it sounds like you have been handling this amazingly well. I mean, you have sought out the best doctors you could, and have searched methodically for an answer. I am sorry you do not have one yet given all of your efforts and expense. I will keep you in my thoughts and hope for the best.
    Anonymous 42789 Replies
    • February 8, 2008
    • 02:02 AM
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  • Is the area still sensitive to touch? Have they addressed pudendal nerve entrapment?
    rad-skw 1605 Replies
    • February 8, 2008
    • 11:29 AM
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  • Thank you, elke, for your kind words.As for the pudential nerve entrapment, the area is sensitive to touch. It is just extremely hard to climax, and it doesn't feel much more sensitive than any other area of my body, which it certainly did in the past. This is probably part of the reason why it is difficult to get and maintain an erection. The area can become erect, but only with direct, forceful physical stimulation, and the erection is not very pleasureable. This, too, is not how things were in the past, when up until this problem started a simple passing thought could generate a satisfying erection. Does this sound like possible pudential nerve entrapment still? All nerve tests I've had so far have come back normal.Another potentially relevant piece of information--my cremasteric reflex is not even close to normal. While my scrotum can still adjust its firmness at times when cold, in general it hangs completely limp--so much so that my testes are normally three to five inches away from the rest of my body. My scrotum is often just as flaccid when I have a weak erection. This, too, is something that is not normal and never used to happen. Any ideas on what this could mean?There are so many things that have changed and are not normal for a man of my age that it truly baffles me that no doctor can figure it out, and that it has taken me three years to convince one urologist that there is in fact a physical problem.
    Anonymous 42789 Replies
    • February 10, 2008
    • 06:49 AM
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  • I'm thinking that the absent or altered cremasteric reflex is significant. I know you have been to at least 3 neurologists so far and are tired of them, but I'm wondering if there might be a 4th, 5th 6th, etc who could figure this out for you?I have a hard to diagnose neurological disease which took 8 neurologists (and 8 years) to figure out. I met many who dismissed my symptoms and told me I wasn't sick at all, but finally found one who figured this out. Looking back at the ones who denied I was ill, they did not do the most thorough exams on me and missed a lot of abnormalities that some of the other doctors picked up.I'm wondering if perhaps another neurologist who is more thorough, more knowledgable, or both, could be of assistance? There might be other subtle things on neuro exam that they detect and that can help them hone in on a diagnosis. What did the doctor who detected the absent cremasteric reflex tell you? Did he offer any kind of differential diagnosis? These are just thoughts, and I hope they don't offend you because I know you are frustrated and tired of going to doctors. I can't say I blame you, either. I'd be pooped too. In fact, I almost threw in the towel, too, because going from doctor to doctor gets real old after a while.
    Anonymous 42789 Replies
    • February 11, 2008
    • 06:29 AM
    • 0
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  • I've done a little more sleuthing in my books. The cremasteric reflex involves nerves in the 1st and 2nd parts of your lumbar spine. In general, reflexes come in through sensory nerves to a certain level of the spinal cord and then exit in or near that same level as impulses going to your muscles. There's usually one of 3 reasons you lose your reflex: 1. the sensory nerve is damaged and no signal goes to the cord2. the nerves going from the cord to the muscle are damaged3. the muscle isn't working okay.You mentioned that you have had MRIs and CT scans, etc. What exactly has been imaged?I could not tell from your previous posts if they have looked at your spine and whether you may have some intervertebral disc disease or not (you put a question mark by it, so I don't know if you weren't sure they checked it, or if the reports came back inconclusive?)If you haven't had an MRI of your lower spine including the lumbar region, I'd definitely say it's worth looking into.In fact, have you had everything down there imaged with MRI? I'm still wondering about the increased girth/bulge you mentioned down there and am wondering if there isn't something structural going on.These are just thoughts. I don't know if they are helpful. I'm thinking by now they must have imaged everything down there, but would feel better knowing for sure that they did, that they were MRIs, and what the radiology reports say.And actually, I think that nerves higher up play a role in ED. Have you had your entire spine and brain MRI'd at all?I'm also wondering if you have any other symptoms anywhere else, such as numbness, tingling, pain, problems with bladder or bowel function, problems with your balance, vision, anything else, etc...?Hang in there.
    Anonymous 42789 Replies
    • February 11, 2008
    • 10:50 AM
    • 0
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  • This may seem crazy, too, but what about the possibility that there is a strain of HPV that causes this problem? Here's why I think this is a possibility. Beginning in March of 2005, one month before my problem got really serious, I was with someone who I later found out was diagnosed with HPV. In fact, the last "normal" intercourse I had was with her, one or two nights before I noticed the problem. It was after being with her that I started to notice changes in my skin tone and sensation. No other visible signs of infection occured, although I was told by a dermatologist that I saw that a few tiny, dark lumps could have been signs of HPV. I even asked him to biopsy them, but the results came back "inconclusive". He seemed to think I did not have HPV. Fast forward two years. I was with a new girlfriend, and she two claimed one day that she was having a problem with sensation. So, blaze, could this be an effect of HPV? Or some other, as-yet-undiscovered STD? As a side note this same dermotologist diagnosed me with penile eczema a few months ago. That also seems strange to me. Why would penile eczema suddenly appear on an otherwise healthy younger male who has no history of eczema or any other skin issue? Again, it makes me wonder if something unknown to the medical community is going on here.I checked out the antenna website link you sent. Of course there are towers and antennas near my house. You could very well be right about electromagnetic sensitivity. I guess I'm not enthusiastic about it because it doesn't really provide me with an answer or a cure, and I still believe that something "happened" here. One day, okay, the next day not okay at all and serious decline from there on out tells me that something happened right on or before that day in April 2005 that I noticed this. Yes, weakness started in 1999, but it was steady until 2005, when response plummetted and has continued to do so since then. I'm not discounting that theory. I just still hope that it is something other than that and want to find that other cause.elke, I have had MRIs of my brain, upper spine, lower spine, you name it. Three different neurologists have looked at these. I have seem two of the best neurologists this country has to offer so far (I did my research). Here's my history with the reflex tests: I had to basically beg my excellent urologist to perform manual/digital tests of my bulbocavernosus and cremesteric reflexes. He couldn't detect a bulbocavernosus, and said that my cremasteric reflex was absent. It is in fact extremely weak--sometimes I can elicit it and get a feeble response. He then sent me to a neurologist, who also did the digital examinations and said that the reflexes were very, very weak, but present. This neurologist then sent me to a second neurologist, one of the only ones in the country supposedly who does evoked potential studies on the nerves of the penis and can test the bulbocavernosus reflex in that way as well. He said the bulbocavernosus reflex was present and that the cremasteric reflex had no bearing on erectile function.I tell you, there are so many things that are wrong or strange, and localized to this one area of my body, that there's got to be something that jumps out at someone. All the rest of my is healthy, including neurologically, as far as I know.Part of the problem I've had is that I haven't had a doctor yet who truly wants to help me and takes something more than a passing interest in my case. They pass me off to other doctors, or try to use all of the tests they know to rule out possibilities for problems until they can arrive at the conclusion that nothing is wrong and send me away.
    Anonymous 42789 Replies
    • February 12, 2008
    • 10:10 PM
    • 0
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