New member, scared and angry

[Redsteel]

I’ve never really been good at these introductory type posts, but here goes. Wall of text with symptoms and experiences inbound.

31, single, ED for ~4ish year

I guess I’ll just start at the beginning. ~4 years ago I was masturbating w/ lube. The problem was, I was having trouble finishing. Instead of listening to my body, I pushed through and finished, ignoring a feeling of what I would describe as friction burn towards the end.

Immediately after this, I was super swollen and painful to the touch. I was also, as I found out once the pain at the touch had gone away, impotent. I didn’t go to the doctor because I live with family and I was scared and humiliated. I took the stupid gamble of hoping it would all go away soon.

About a week later, it did. Basically everything got back to normal with 1 exception: I noticed my spongiosum wasn’t filling with blood like it used to. It could engorge, but the flow was so weak that basically even negligible pressure would flatten it, followed by a weak rebound to semi engorgement.

Fast forward a year, I go to my GP and uro #1. I tell uro that my spogiosum isn’t acting normally, and he basically treats me like I’m stupid, draws a diagram in pencil of what a penis looks like, and sends me on my way with viagra (at my insistence). No tests done, no exam.

Fast forward a year and a half, I notice I now have position dependent ED where I can’t maintain erections in a standing/seated/kneeling position. At this point, erections on my back and side are still strong (with the exception of the spongiosum) I also have intermittent periods of impotency, and my erection quality is noticeably decreasing over time. There are periods of time out of the blue where I have dramatically worse erections, that then eventually improve but only to a new, worse baseline. In a panic, I go to a new uro (old one left the practice), and am basically told again that nothing is wrong and I’m given cialis. Only a visual/manual exam is done.

Fast forward 6 months, around New Year’s Day this year I’m suddenly experiencing difficulties urinating. At this point, when I get nighttime erections, sometimes my spongiosum feels completely flat, as if it’s just not there. As before I started having issues it was extremely prominent, to say this is traumatic is the understatement of the year. I also have noticeably less blood flow when flaccid, nighttime erections are much weaker and stick around so long that I get nervous I have a priapism, and for some reason when I lay on my side my spogiosum (and sometimes my whole penis) engorges, though now even this effect is weak.

I go back to uro #2 and trauma dump, forcing him to hear my issues. I tell him I’m done with meds, I have physical issues and I need tests run and (almost certainly) surgery. I tell him I’m tired of band-aiding my issues, I want real, impactful help that in my eyes can only be achieved through surgery. He then sends me to uro #3…

who is the biggest piece of shit I’ve ever met. This guy tells me “I’m the type of person to try things once and give up” for quitting viagra when my only original symptom was the spogiosum thing and it didn’t help, he mocks me for using anatomical terms, he drops a few “did that come up when you googled it”, he drops a “I don’t see why you’re so obsessed over this spongiosum thing”, he asks me direct questions and then IMMEDIATELY interrupts me to say something snarky, I could go on and on. Again, only a manual and visual test is done, the only blood I have had drawn was a total test by the last doctor, and he ignores me asking for a proper exam or tests. Oh yeah, cherry on top, he wants me on Test because it would “help my libido” and my number was low. You know what else would help my libido? Getting proper fucking care for my broken penis and slowly working through the horrific, cripplingly depression this is causing. Unbelievable.

This was around 3 months ago. I would have gotten a new doc sooner, but honestly the last one set me back. Present day, I find out the new uro (#4) that I go to in a few weeks is a giant jerk after I look up reviews online, so now I have to cancel and trying desperately to find someone competent who isn’t a complete ass just so I can get basic tests done and some answers. My goal right now is an implant, but I assume I need tests done first for insurance purposes. An implant also won’t do jack about my spongiosum (and by extension gland that doesn’t really engorge well anymore) and while every fiber of my being prays there is a fix I have absolutely no hope left at this point.

I’m just so tired of everything. Even laying down in bed feels traumatic if I get a semi or “full” and feel what it has been reduced to. I can still get somewhat acceptable measurements with drugs or stimulation on a good day which would give me some hope, but honestly the whole situation has me near rock bottom.

I have no idea what’s wrong with me other than what I assume is a rupture(s) of some kind, but no one will even check for that. Why is good care so hard to find?

So yeah, that’s my story thus far. I’ll probably mainly be lurking here and there to trying to learn and find info on good doctors and stuff, but I may pop in here and there to comment.

[Txagq8]

Red steel.

You’ve come to the right place.

There’s enough guys with enough varied experiences to provide more info than you can digest.

First things first. I’m not a stalker. But if you can generally tell us (within a couple of hundred miles) what part of the world you’re in some frequent visitor might be nearby, and might be able to recommend a good doc.

I understand the frustration with doctors. Things are better now than nearly 40 years ago when I got diagnosed. I was told everything from all psychological to performance anxiety to have a glass of wine beforehand to use a cock ring.

You don’t, in your current situation, need to rush to the nearest best high volume implant specialist. You need a complete work up overseen by a guy who specializes in andrology. They’re gonna need to check out cardiology, endocrinology, all sorts of shit.

ED can be its own ailment but it can also be a symptom. Before throwing blue pills at the problem it’s imperative that you make sure nothing else is wrong.

Frustrating but true. It’s not an instant overnite fix. The good news is there are a lot of solutions and when one fails to work you still have options. That’s true until you get to the implant and they have a better than 90% satisfaction. That’s even higher when you use a high volume implant guy who has done so many that he’s an expert in preserving your size.

It’s tough to gripe about a hefty hardon on demand that lasts until you and your wife (or lover) just can’t take it any more.

I think you instinctively demonstrated rule 1 of ED guys who have had successful journeys - never put up with a physician in whom you lack trust & confidence.

[RJ_in_Pa]

Redsteel

Welcome to forum. So sorry to hear you are having these struggles, especially at such a young age. Your story weighs heavy on my heart.

I don’t have too much to offer except we are all here for you. Don’t give up trying to find a Dr that will help you. I agree with Txagq8 that you shouldn’t rush out and get an implant until you find out what is causing your issues, which may be correctable or at least, treatable.

Guys - do you think the “mazemenshealth.com” would be a good place for him to start? I see the ad on the left side of the forum, but I don’t know anything about it.

RJ

[Lester33]

Redsteel,
Welcome and I will echo other guys posts and please don’t give up on finding a good ED urologist. When living in Florida I had similar problems with doctors and a really great guy on here took me under his wing and helped me out. Won’t bore with details but I finally got my PCP to agree then went for my implant. Its quality of life and regardless of age sex is important to us. I’m available if you want to PM me everyone on here has difficulty.

[Redsteel]

First things first. I’m not a stalker. But if you can generally tell us (within a couple of hundred miles) what part of the world you’re in some frequent visitor might be nearby, and might be able to recommend a good doc.

My general area is East Tennessee. So far from lurking I’ve heard of a good implant guy in Atlanta, and I think one in Kentucky. As for local, I’m basically at a loss. Basically everyone here sucks from what I’ve read, not just in not being specialized but specifically how they treat their patients like trash. I’m actually about to cancel an upcoming appt. with some rando my GP referred me to after reading terrible reviews online (literally more negative reviews saying he was a cruel asshole than positive ones).

The new guy I want isn’t necessarily specialized in my/our issues from what I’ve read, but apparently he’s super nice and good at what he does. I do recognize I need a full write up (with extreme priority given to looking for internal damage/rupture/fracture in my opinion), but… I’m sure you understand. There’s a certain level of extreme, primal panic that’s hard to get past when your erections get super weak and clearly abnormal. I honestly just see anything less than surgery right now as bandaiding a poisoned wound so to speak, it *may* give varying degrees of better erections but it doesn’t address the underlying, ever worsening issues.

In my head, in an ideal world, I’d like implanted by 2025. I honestly haven’t lived the intimate life I’ve wanted so far in life, and postponing this until I’m older (even if I can stop the metaphorical and possibly literal bleeding) is a regret I don’t think I will be able to overcome, to be blunt.

[Redsteel]

Redsteel

Welcome to forum. So sorry to hear you are having these struggles, especially at such a young age. Your story weighs heavy on my heart.

I don’t have too much to offer except we are all here for you. Don’t give up trying to find a Dr that will help you. I agree with Txagq8 that you shouldn’t rush out and get an implant until you find out what is causing your issues, which may be correctable or at least, treatable.

RJ

Honestly, just being able to talk about this with people that understand helps. I really appreciate the kind comments already, as my only experience outside of this forum is people treating me like I’m lying or like they don’t care. I appreciate it.

[Redsteel]

Redsteel,
Welcome and I will echo other guys posts and please don’t give up on finding a good ED urologist. When living in Florida I had similar problems with doctors and a really great guy on here took me under his wing and helped me out. Won’t bore with details but I finally got my PCP to agree then went for my implant. Its quality of life and regardless of age sex is important to us. I’m available if you want to PM me everyone on here has difficulty.

At the risk of sounding dramatic, my hope is running incredibly thin, but I am trying. It’s really shattered my worldview to see how incredibly terribly doctors can treat their patients and how some don’t actually care about helping you. I’ll do what I can to make it work, but I’d be lying if I said my local options for a basic full write up weren’t starting to dwindle

[Txagq8]

Re: East Tennessee. Beautiful part of world. My wife & I try to get up there once or maybe twice a year.

I’m guessing Atlanta is a 3-5 hour drive. From my perspective, there’s your answer. I would get a consult with Dr. Hakky. Lay everything on the table. I suspect he can coordinate with your family practice guy to order all the labs & tests he needs close to your home. Implant/ED/Men’s Sexual Health reputations aren’t earned by accident. Hakky’s reputation is stellar. If I was in that part of the world, and needed a revision, he’d be my first choice.

Doctors, unfortunately, are like the rest of the human race. You’ve got good guys and not so hood guys, you have superheroes and guys who I wouldn’t piss on if they were on fire. I know it’s tough, but you’re dealing with your manhood and most guys are real attached to their’s. Haste makes waste. As tough as it may seem try to be as patient as possible.

I was done by a lesser known high volume guy in Austin. Although I liked the surgeon, I loved his staff. His PA in particular got me started as a bionic man with patience plus exemplary service after the sale. I will probably give the same doc first dibs on me when it’s time for a revision but I haven’t ruled out Clavell in Houston.

It’s pretty simple: if the doc is a shithead you don’t want him cutting on your junk. Not every great foctor is Mister Congeniality, either. Look for somebody you trust, somebody who is brutally honest, and a consummate professional not just someone who is a good ol’ boy.

I have no idea how your insurance works but if necessary I’d start telling the primary care physician to write you a referral to Dr. Hakky in Atlanta and I wouldn’t take no for an answer.

[on the road of life]

Welcome and as mentioned, you will find various experiences and opinions that you will not always like.

Maybe what I'm going to say sounds a little harsh to you, believe me, I don't mean to be unfriendly, but sometimes we need other people to tell us what it looks like from the outside, instead of just giving us kind words.

I do not justify, in any way, that a doctor treats a patient as a fool or is ironic about his problems. It is reprehensible.

Although I agree that a penile echo Doppler should be a primary test, the truth is that most people do not need it. Doctors move by statistics and make decisions from there. According to these statistics, a man in his 30s whose penis was working well and starts having problems, most likely it is not a structural problem.

It was a tremendous mistake not to have gone to the doctor with the injury, perhaps at that time, the doctor would have done more checks and they would have a different view of your problem, unlike when you arrive with a penis, which from the doctor's point of view. it's healthy.

I think that fear makes your story a little confusing.

Take a breath and organize ideas to be able to investigate better and move forward

As soon as the doctor hears that you sometimes have a full erection or nocturnal or intermittent erections, he rules out the physical problem immediately. And they will try to help you with medications (which work for most)

Returning to the topic of Doppler, there are colleagues on the forum who do not accept the negative result of venous leak. Maybe because the option left is to treat the aspects of stress and anxiety that sometimes we don't know how to do or we don't want to take responsibility.

I agree that you should look for a doctor who will listen to you with respect and attend to your requirements or needs. The exam may not be necessary, but if it gives you peace of mind and does not cause problems. Why not? Insist, I had to do it and mine was positive.

Keep in mind that three doctors have given you the same diagnosis.

I hope that colleagues here can recommend a doctor in your area that works for you.

Do not give up, but be patient, be constant, it is frustrating, many of us spend years until we find the solution, which does not necessarily have to be an implant (nuclear option) and if it is, nothing happens, we will tell you the details.

[Bambino09]

Hello brother, something similar happened to me too.
I recommend that you buy a ring, many who have not even been hit use it. I use it and it works, but you have to find the right one or an elastic band.