andrologists left me more confused and in fear than before/sociailized medicine

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peter123

so yesterday I was at the andrologists who specializes in peyronies(in Germany specialization basically means they know what the disease is, that's how little of a crap the average urologist gives or even knows about this). alright so then I went there, showed him my pictures, he said it looks like I have peyronies from the pictures. he said he can palpate some thickening of tissue where the bend is but he could not see anything on ultra sound. CAN this be? he said that's common in early stage but you can see with your naked eyes the thickening of the tissue, I even uploaded a video here


https://imgur.com/a/4ELRtR4


he said he can't see it on ultra sound which is totally confusing to me. maybe the actual plaque is not this cord? surely he should have answered those questions but that is the issue with socialized medicine. he was actually visually bothered by how many questions I had and who I would not want to leave.  :-[


he also said I might get bad hourglassing in the future and that I can do very little with pumping and traction.
i dont know what the [email protected]< I am supposed to and I still dont know what this F^@$!ng cord in my penis is after seeing 3 urologist in this F^@$!ng retarded country. dont believe the hype about European medicine, I would GLADLY pay 400$ to visit an urlogist like Levine or dr Lue who actually know their crap and GIVE A crap. he said crap like "yeah your sex life is going to change dramatically better prepare for that" and other major insensitive crap to someone who suffers from major depression dn suicidal ideation. after leaving the office I almost jumped in front of a high speed train. and maybe I should have. maybe I am not there yet but I sure as hell am getting closer and closer which scares myself even.

what do I do now? visit the 4th and 5th urologist in half a year(cause that's how long you wait to get an appointment)? he said traction can rein jury it, that I should do manual modeling and only under anti oxidant therapy(even though there is no evidence of these drugs actually having in vitro anti oxidant effect)

anyway ima. 22 year old with major depression and body dysmorphia and I basically got kicked out of the office yesterday for asking so many questions and taking so much of his time. nobody gives a crap AT ALL. I would LOOOOVE to have cancer or some other f'~c<+d up disease that is at least more well know, that you can talk about with people without shame and that there is actually a treatment algorithm for. peyronies is not only mentally devastating its  also the most useless and laughable disease as well. it has no real life threat apart from suicide which in my case is a very high possibility if it gets ANY worse.


what can I do?

I really dont know anymore. I feel so defeated and pathetic I literally can't get out of bed anymore. it completely destroyed me and made my dysfunctional beyond anything I could imagine. sure I could visit other docs in Germany. prost in Hamburg or whatever but these are all arrogant, disinterested and crap. seeing one abroad is not possible due to covid. I am at the end

peyronies attacks the body and mind and my mind is completely infected and diseased.
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

P1992

I feel like you in my feelings about this disease. I sympathize with your pain, because I know what you're feeling. It is a dishonest fight against this disease and it completely harms you, both mentally and physically. I'm still trying to hope for a cure, but I see that, due to the complexity of my case, I only have surgery to implant a prosthesis, I think. I hope you find a doctor who can really help you. I wish you all the best.
54 years, self-induced peyronie
Upward curvature ~40º-50º, narrowing and retraction in flaccid and erect. Multiple plaques, loss of sensitivity, pain sometimes in a flaccid state and always on erection, axial instability and erectile dysfunction

TonySa

Peter, that doc is quite the ass.  It does happen that plaque sometimes cannot be seen on an ultrasound.  However, he seems to be criticizing traction and VED  without any basis.  You might be able to do a video consult w Levine for example.  If it is early Peyronie's most docs would recommend traction or VED.  You could even just start w light hand traction such as in NeoV videos on you tube.  I'd try to start something like that once you can find the wherewithal to do so in spite of that so called specialists poor medical care.  Good luck guy and keep us posted on what you try.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

peter123

Quote from: TonySa on July 17, 2020, 11:18:49 AM
Peter, that doc is quite the ass.  It does happen that plaque sometimes cannot be seen on an ultrasound.  However, he seems to be criticizing traction and VED  without any basis.  You might be able to do a video consult w Levine for example.  If it is early Peyronie's most docs would recommend traction or VED.  You could even just start w light hand traction such as in NeoV videos on you tube.  I'd try to start something like that once you can find the wherewithal to do so in spite of that so called specialists poor medical care.  Good luck guy and keep us posted on what you try.

I'll probably try to kill myself
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LuisFernandez

You know i think he's right, and i honestly wish my Urologist was that blunt to me in the beginning. He seems like he actually examined you well.

Because, with that advise i believe i would have gotten the implant on day 1. I think that's the only thing that can save a penis from deforming, if you get it early enough.

But instead, they give you false hope in Pentox. Cialis did help in at least keep some of the size. But nothing you can really do.

I talked to Dr. Eid and he also advised against traction and restorex. He said that it makes things worse, he only uses it when there's a hard plaque and severe and advanced deformity. So yeah even that won't help.

He likened to using traction as trying to increase the size of a tire but not the inner tube (the muscle.) It will hurt your erection and cause more injury.

He said that Peyronie's is a bucket of conditions. Some have it because of underlying conditions, other have it because of injury. For those that get it because of injury and they are young they should not do any traction and let the body heal itself and hope for the best.

I really wish we had this type of advice for traction, because i also believe that it made things worse for me and i have pictures to prove it.

Really, i think a good piece of advice to people that just got the disease is to get the implant ASAP before their penis shrinks and deforms. That's the only real way to stop the progression IMO.

I'm honestly in the same road as you, i honestly don't want to wake up anymore. But i have kids and that's the only reason i'm still typing this.
Injury in April 2020. Onset of Erectile Dysfunction.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

TonySa

I've never heard of Dr Eid advising against traction for Peyronie's.  It is not what the medical research shows nor explains the many successes w traction.  I hope someone else who's spoken to Dr Eid re traction weighs in.  He may have been referring to particular type of or presentation of Peyronie's...
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Guy_87


Did anyone mention Lymphangiosclerosis as a possibility?

Lymphangiosclerosis is a condition involving the hardening of a lymph vessel connected to a vein in your penis. It often looks like a thick cord wrapping around the bottom of the head of your penis or along the entire length of your penile shaft.
https://www.healthline.com/health/lymphangiosclerosis#causes

Try googling it and seeing if your symptoms line up.  The healthcare is the same here in Canada.  Free healthcare but I will have to wait at least 1-2 months to see a Urologist and I have already had this condiction for a month.  I have an ultrasound via GP at the end of July but from what I read on these boards, it is quite possible that the ultrasound will just say 'undefined lump/mass' (if it picks it up) but will not define it. 

I feel you Peter.  Just try to relax.  Tell yourself you will give it 1 year and then reevaluate where you are at in 1 year.  You could be one of the 10% where it resolves or it could stabilize as-is.  You never know I suppose.

peter123

Quote from: Guy_87 on July 17, 2020, 09:02:11 PM
Did anyone mention Lymphangiosclerosis as a possibility?

Lymphangiosclerosis is a condition involving the hardening of a lymph vessel connected to a vein in your penis. It often looks like a thick cord wrapping around the bottom of the head of your penis or along the entire length of your penile shaft.
https://www.healthline.com/health/lymphangiosclerosis#causes

Try googling it and seeing if your symptoms line up.  The healthcare is the same here in Canada.  Free healthcare but I will have to wait at least 1-2 months to see a Urologist and I have already had this condiction for a month.  I have an ultrasound via GP at the end of July but from what I read on these boards, it is quite possible that the ultrasound will just say 'undefined lump/mass' (if it picks it up) but will not define it. 

I feel you Peter.  Just try to relax.  Tell yourself you will give it 1 year and then reevaluate where you are at in 1 year.  You could be one of the 10% where it resolves or it could stabilize as-is.  You never know I suppose.

There is absolutely no way I can make it another year like this. My mental health has been declining so rapidly, I basically think about killing myself multiple times a day, from experience I t
Knkw that if you have been destined for it, things not only can always get worse, they will
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Cabby

You need to try and calm down little there are implants etc and other ways of fixing things. Suicide isn't the answer think of your family, life has so much to offer and it doesnt all revolve around someone's penis. I'm sure a week or so ago you posted the same video showing the chord and you said to me the urologist said it wasnt peyronies?
39 been noticing pain and curvature to the left and maybe a little upwards for around 6 months. Pain is most days now . Taking vitamin e and arginine daily.

peter123

Quote from: Cabby2020 on July 18, 2020, 04:02:25 AM
You need to try and calm down little there are implants etc and other ways of fixing things. Suicide isn't the answer think of your family, life has so much to offer and it doesnt all revolve around someone's penis. I'm sure a week or so ago you posted the same video showing the chord and you said to me the urologist said it wasnt peyronies?


calm myself down Bec<use there are implants?? if I need an implant at 22 id would most certainly try the shot int he head method first because thats literally less humiliating. most people who kill themselves do not believe that suicide is the answer. its an affect affect action because they cannot cope with pressure and pain. you are just trying to manipulate stuff I said or didn't say to delegitimize my well founded desire of everything just being over.

germany, when it comes to things like this is the last country you want to be in. our doctors are the most cucked people int he world, if its not a urinary tract infection, anything not ridiculously common, you are f'~c<+d. nobody will want to treat you

i have been to 4 urologists now and 3 said I definitely do have peyronies and the one who didn't, he said he wouldn't know because there is nothing to see on ultrasound. bottom line is I am taking a high dose of viagra and haven't had a single erection in 10 days. my penis is wasting away, its not usable anymore anyway sitting at 4 inches in length. but yeah, it won't kill me so its not that bad right?
honestly I wish peyronies could kill you. I really do. especially because these "professionals" would then finally pay attention to it. I wish bad diseases upon everyone who I have seen so far thats for sure
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Cabby

Just trying to help I wont bother anymore . You carry on feeling sorry for yourself!
39 been noticing pain and curvature to the left and maybe a little upwards for around 6 months. Pain is most days now . Taking vitamin e and arginine daily.

peter123

Quote from: Cabby2020 on July 18, 2020, 05:10:28 AM
Just trying to help I wont bother anymore . You carry on feeling sorry for yourself!

I'm sorry that your platitudes did not help me
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Guy_87

Quote from: peter123 on July 18, 2020, 05:40:04 AM
I'm sorry that your platitudes did not help me

Peter, have you ever talked to a Doctor about antidepressants?  I know they are not for everyone but they have helped me in the past at different stages in my life.  They can help a lot with anxiety and stress etc.  Just a thought.

peter123

Quote from: Guy_87 on July 18, 2020, 04:37:30 PM
Peter, have you ever talked to a Doctor about antidepressants?  I know they are not for everyone but they have helped me in the past at different stages in my life.  They can help a lot with anxiety and stress etc.  Just a thought.

I have but I was too afraid of sexial side effects as sexuakity is my main source of anxiety this seems counter productive
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TonySa

Let the doc know your concerns they should then try an anti-depressant without such side effects like Wellbutrin.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Guy_87

Quote from: peter123 on July 19, 2020, 04:18:44 AM
I have but I was too afraid of sexial side effects as sexuakity is my main source of anxiety this seems counter productive

There are some that do not cause sexual side effects or the risk is very low.  As Tony mentioned, Wellbutrin and there is also Trazadone (actually helps with erections), Buspirone, Remeron/Mirtazipine and some SSRIs like Luvox and Lexapro are said to cause less sexual side effects than other SSRIs.

Might be worth bringing these up when you go back to your Psychiatrist/Doctor.

Hontas

Most urologists/andrologists are just pure trash to put it nicely. You have to find a good one. I edited this post, i had a lot to say but i really don't want to. I don't see the support i deserve when i talk about some truth.
I will probably leave the forum in a few days and won't come back for months or years IF i ever come back that is. I wish all of you good luck, the toughest of people.

Hawk

Quote from: Hontas on August 24, 2020, 06:13:14 PM
Most urologists/andrologists are just pure trash to put it nicely. You have to find a good one.

I am known for being blunt and demanding evidence for outlandish claims of cures, treatments, causes, or any other statement.  We can't have a forum that serves men and couples if we don't run off of facts and evidence.  There are 13,000 urologists in the U.S.  How many of those do you have personal first-hand experience with and how many more of them do you have documented evidence of them being pure trash. I support real statments and complaints but not baseless statements.

This is not a rhetorical question.  You made a strong claim and I expect an answer. Either back up you statement or admit to popping off just to feel good without knowing what you are talking about ...... or enjoy your long vacation.

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

jan.schaller1958

Quote from: peter123 on July 17, 2020, 04:44:24 AM
so yesterday I was at the andrologists who specializes in peyronies(in Germany specialization basically means they know what the disease is, that's how little of a crap the average urologist gives or even knows about this). alright so then I went there, showed him my pictures, he said it looks like I have peyronies from the pictures. he said he can palpate some thickening of tissue where the bend is but he could not see anything on ultra sound. CAN this be? he said that's common in early stage but you can see with your naked eyes the thickening of the tissue, I even uploaded a video here
Quote reduced per forum rules against quoting entire posts! - warning


I really sympathize with you. Urologists don't usually take Peyroines seriously because it's not life-threatening, it's  just a benign plaque build-up in the tunica albuginea. But it messes with your head big time.  I didn't get it until I was 56. I never even heard of it when I was 22, so I can't imagine what you are going through. Before this verdammte IPP, Peyroines, I was 20 cm and straight mit einem Ständer (erect), so my Pimmel was really mein bestes Stück, as we say. Then when I got Peyroines, I went to a regular doctor, this Chinese woman. She had a nurse come in the room when she examined me, which was strange. Like what did she think? I was going to complain at 56 that this woman had fondled me? That made no sense. She said she could feel the Peyroines plaque. Then I decided this was stupid. I needed to see a urologist. The urologist agreed it was Peyroines, but I insisted on a referral to Dr. Lue in San Francisco. He did the ultrasound and confirmed the diagnosis. Then (2015) he recommended surgery, but said he couldn't use Xiaflex.  But the surgery didn't sound that good, so I declined that. Then, after 5 years it got better on its own (but I still lost length from 20cm to 15 cm erigiert (hard)). I used Pentox, but that was junk and did nothing. Then I went back to Dr. Lue this year, 2020, and he said now I could do Xiaflex (he said no earlier) and recommended against surgery because at 62, I'd have a 40 % chance of Erectile Dysfunction with it. I don't have Erectile Dysfunction, so I won't do a surgery to straighten me out. Just Xiaflex if they will even do it now with this Covid 19 going around.  Maybe. Hang in there. Your condition will probably get better on its own. If I were in Germany at the Moment,  I'd probably go to these guys. They seem to know a lot about Peyroines: https://youtu.be/67GyrCdn7gQ
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peter123

I've been in cologne already. I wasn't very helpful, they were very impatient, I didn't even get to pose all the questions I need. Xiaflex isn't available in Europe. It's such a F^@$!ng nightmare. And I see no way out. None
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

jan.schaller1958

Quote from: peter123 on August 28, 2020, 06:29:48 AM
I've been in cologne already. I wasn't very helpful, they were very impatient, I didn't even get to pose all the questions I need. Xiaflex isn't available in Europe. It's such a F^@$!ng nightmare. And I see no way out. None

Well, I thought if you were near Köln you might consider seeing that Dr Birkhahn, but then he's going on about die Stoßwellentherapie, but he says that it's best when there's pain with an erection. But, I heard shockwave therapy is not that great.

If you've seen those guys, then it would be hard to recommend someone else. I did like Dr Lue in San Francisco, because he probably knows more about IPP/Peyroines than anyone else, and he's a funny guy, I mean he has a good sense of humor. When I first saw him he took a lot of time with me, did an ultrasound and everything. I had the hourglass deformity at the time and indentation, and I did take Penox for about a year. The hourglass deformity went away on its own as did the indentation. Maybe the Pentox helped. It's hard to say. Now I just have some of the length I want to get back and get rid of the 30 degree upward bend. I'm hoping the Xiaflex will work, because that the only real treatment option.
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jan.schaller1958

I like Tony's suggestion of trying to get a video /Skype or Zoom consult with Dr Lue. I know my private insurance  paid him 600$ for my extensive consult, including ultrasound. He spent a lot of time with me. And all he does is Peyroines Disease treatment. Nothing else, and trains residents in it. I'd at least look into it.
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peter123

If there was no travel ban I'd probably see Dr lue or levine or trost in USA but it's impossible right now with stuodo Corona.
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jan.schaller1958

Yes, Peter, I'm hoping they'll get a vaccine for corona and or lift that travel ban soon.
I don't know who Drs Levine or Trost studied under but I would be surprised if it were Dr Lue. When I first decided to see a Peyroines specialist, I looked up top Peyroines doctors and wanted the best. I found Dr Lue and another guy at Stanford Medical Center, one of best Medical schools and hospitals in the entire US. When I went to my appointment with Dr. Lue, I asked him about that guy over at Stanford. He said, ,,Oh, yeah. He was one of my students." So, at that point I knew I had found the right man. I'd rather have the professor, not the student, frankly.
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