Urology trauma

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kdlstarry9

kdlstarry9

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I am not sute where this belongs. Following my car crash 2 years ago I have been having urinary issues and pelvic issues on top of all my other pains, weakness and shaking etc since then. I have been able to recover mostly from my back pain and much of the pelvic pain and such. But I still have some urinary issues namely leaking slight to moderate amount a lot of time quite suddenly.
I saw a number of urologists and also had many bad experiences with lousy doctors and therapists. Due to urinary retention nonresponsive bladder, pelvic floor issues I had to be catheterized in fact multiple times. And on top of that I underwent many painful procedures from couple cystoscopy to urodynamics and such. Each time my penis and genitals hurt a ton. I tried to push through it all and was in large part by myself dealing with all the pain, doctors, medical bills and whole mess.
Many of doctors laughed or otherwise dismissued my urinary and pelvic complaints as did my family(whom I was very reluctant to even share with)
I was left feeling very alone and ashamed and degraded on top of all the pain I had. I ended up being depressed and developing ptsd from the car crash experience.
Working with my therapists I have been able to relieve some of those flashback of my car crash itself. I still get some but now it seem to change some.

They are largely focused and centered around my urology visits, the pain, shame and helplessness as I laid there on hospital bed having some nurse and doctor sticking a huge tube up my penis. I even recall quite vividly how the nurses laughed and joked about catching me. But I was too scared, exhausted, ashamed and in pain to do anything
Later when I finally got home I end up crying from all of that.

I have scheduled to see a new urologist to help manage my care. From the reviews I read online he seems to be pretty good. I don't expect too much from his end as those medI cation largely gives me nasty side effects.
Has anyone else ever had any flashbacks or sudden terrors/Panic to urological/medical procedure or such?
 
kdlstarry9, you're not the only one who has had their share of issues with urologists. Out of all the specialists I've gone to over the years, they seem to be the ones who are most insensitive to their patient's needs and desires. Trying to find a good one is extremely difficult--when it comes to other specialties I can talk to good doctors I already use and get a recommendation of someone who knows their stuff and is a good doctor--not so with urologists.

I know I've had bladder control problems all my life and basically deal with neurogenic bladder, I wear diapers and deal with it. It's better than pharmaceutical or surgical options I have been presented with. Nearly a decade ago I started having issues with testosterone levels and reactions to testosterone replacement methods. The final method we ended with was injections, and after several months I started having serious testicular pain. First urologist I was sent to focused solely on my diapers and insisted that I needed cured and out of them. The pain that made my life nearly unlivable was dismissed as 'insignificant'. Never went back to him.

Second one was better, first tried me on prostate medications thinking that was where it was from, and took months of appointments and the pain getting worse before a simple injection of local anesthetic in spermatic cords that stopped the pain (for a night) let him conclude pain was in the testicles themselves. From there, it was several months of going to a pain specialist to do nerve blocks (each one failed within a month) and I was faced with one of two choices--either long and involved surgery to implant a neurostimulator and route wires to appropriate nerves, or simple bilateral orchiectomy (removal of testicles). Surgery for neurostimulator was estimated to be hours long and I would need smaller surgeries every few years to replace batteries. Pain specialist recommended the orchiectomy and suggested I talk to urologist about it.

The urologist refused to even consider orchiectomy, said the implant was only possible option, refused to see me for any further discussion. I ended up getting a referral to Stanford where I finally found a good doctor who considered it, looked at all the options, and finally performed the surgery, ending the pain immediately.
 
<Hugs analogrto>

So sorry for your pain. I had a couple nerve blocks on spine and pelvis which definitely helped relieve much of my back pain and some of the pelvic pain including pain in my penis. It is hard finding good doctors and therapists. Especially pelvic floor therapists. A few actually made my symptoms worse.
It is a bit embarrassing also to be leaking and having therapist treat me down there but I was able to connect well with my therapist.
You would think that doctors would be quite sensitive to people feelings and pain especially for something so intimate.
I am hesitant to seek another urologist but know i kinda should see one as my pelvic condition has changed some since last time I saw urologist
 
Wow thats horrible and especially shameful from so called professionals and family >< After what you've been through you'd think they'd have some sensitivity
 
kdlstarry9 said:
I am not sute where this belongs. Following my car crash 2 years ago I have been having urinary issues and pelvic issues on top of all my other pains, weakness and shaking etc since then. I have been able to recover mostly from my back pain and much of the pelvic pain and such. But I still have some urinary issues namely leaking slight to moderate amount a lot of time quite suddenly.
I saw a number of urologists and also had many bad experiences with lousy doctors and therapists. Due to urinary retention nonresponsive bladder, pelvic floor issues I had to be catheterized in fact multiple times. And on top of that I underwent many painful procedures from couple cystoscopy to urodynamics and such. Each time my penis and genitals hurt a ton. I tried to push through it all and was in large part by myself dealing with all the pain, doctors, medical bills and whole mess.
Many of doctors laughed or otherwise dismissued my urinary and pelvic complaints as did my family(whom I was very reluctant to even share with)
I was left feeling very alone and ashamed and degraded on top of all the pain I had. I ended up being depressed and developing ptsd from the car crash experience.
Working with my therapists I have been able to relieve some of those flashback of my car crash itself. I still get some but now it seem to change some.

They are largely focused and centered around my urology visits, the pain, shame and helplessness as I laid there on hospital bed having some nurse and doctor sticking a huge tube up my penis. I even recall quite vividly how the nurses laughed and joked about catching me. But I was too scared, exhausted, ashamed and in pain to do anything
Later when I finally got home I end up crying from all of that.

I have scheduled to see a new urologist to help manage my care. From the reviews I read online he seems to be pretty good. I don't expect too much from his end as those medI cation largely gives me nasty side effects.
Has anyone else ever had any flashbacks or sudden terrors/Panic to urological/medical procedure or such?
Click to expand...
I am experienceing very similar situation

Sent from my SM-G925V using Tapatalk
 
Sensitivity training in med school is either missing altogether or not very good.
 
I have had similar pains. I had an ultrasound done on my testes, cystoscopy, pelvic xrays mri...every test i can think of. They still cant determine why i have crippling pelvic pains and incontinence

Sent from my SM-G925V using Tapatalk
 
BabyDenise said:
Sensitivity training in med school is either missing altogether or not very good.
Click to expand...

It's not that it's missing or poorly handled, it's that there are just doctors out there who don't empathize with their patients or don't care that much. There are a number of good doctors out there, it's simply a matter of finding them and getting in to see them (they tend to have full schedules since everyone who finds out that they're good wants to see them and nobody wants to go to the other asshats).
 
I have as well. My last urologist told me it was basically a pain that I would just have to live with. My first meeting with him was positive, all others were much less. I have given up as this is the 4th that cannot find anything wrong and does not really care to try and help.
 
I'm sorry that all of you have had to go through so much. I went through something similar in 1986 when I had a tumor removed from the nerves in my spine. After the surgery I couldn't pee and a middle aged, female nurse taught me how to cath. myself. My urologist informed me that things might start working, or I could be like that for the rest of my life. As it turned out, being able to pee kicked in about six weeks later and I was very relieved, but I had a miserable time during that period.
 
Hey kdlstarry9!

I completely understand your problems, because I'm in a very similar situation right now. Basically, the last 12 months have been pretty insane for me. First I had massive kidney infection while traveling east asia in august last year. That almost killed me. Then, after returning home, I developed urgency symptoms (I had those before, but not as strong and I thought that I'm just drinking too much coffee) to the point of suffering urge incontinence. Because of that and also because I was still having problems from the kidney issue, my GP sent me to an urologist, who somehow seemed to be very annoyed as brought up the incontinence issue. I got a surprise cystoscopy and he discovered 'something' there. But I shouldn't be too worried, it's small and I'm too young to have cancer. Well, he got that wrong. I week later I was in hospital to get the thing removed and afterwards it turned out to indeed be cancer. Great.

The (almost) funny part of that would be, that no one really seemed to be bothered by the fact that it was cancer, but instead everybody was focusing on how unlikely it is to suffer from bladder cancer (and urge incontince) at age 30. You are too young, it's highly unlikly to have cancer, it's highly unlikly to become incontinent from having cancer, it isn't normal, it isn't 'real' incontinence, it'll go away after the surgery... Well, it didn't go away after the surgery, in fact, it even became worse in the first couple of weeks after and everybody seemed to be quite baffled by that. So I went back to the urologist, but everything I got there was another appointment for another surgery. 'It's standard to do the procedure twice'. Ok, I get that, but it would have been nice to know that in advance. To deal with the incontinence, he just handed me over a sample package for Spasmex and that was that.

So I had another surgery, and a couple of weeks later the first routine cancer check-up (that is, another cystoscopy), where my urologist got almost angry (at me?), because I 'still need diapers'. At this point I was shattered, everything that happened in the last couple of months and the fact that no one seemed to take me and my issues serios just became to much to bear. So went to a psychotherapist (I actually knew her, she helped me a great deal with an issue a couple of years back) and among the first things she said after I finished telling her what had happened was, that I got traumatized by what had happened and that I propably developed PTSD from it (by now it's clear that I have). I had a couple of sessions and surprisingly the focus quickly shifted from being ill to having to deal with urologists, examinations, being exposed but at the same time not receiving the necessary care.

Time went by, I felt a little better with the situation, but then the second check-up was due. The incontinence got a bit better, but nothing I tried (esp. medications and 'pottytraining') seemed to help in any significant way. My therapist asked me, if there was a possibility to postpone the appointment, because by then I was having problems again (like intrusions, not being able to sleep, depression) and she was worried that I wouldn't be able to cope with the situation. She also adviced me to find another urologist, but at that time I just wanted to have it done and get it out of the system. Why I didn't follow her advice is beyond me now, but it would have been better to do as she said. It was the worst experience I had at a doctor ever. I don't want to go into too much detail, but I was in a miserable condition when I arrived there and all he did was making fun of me and trying to shame-pressure into further examinations and procedures, while at the same time not listening to my concerns and issues. I wasn't even allowed to leave the office before an appointment at another specialist (and the next check-up, for that matter) was made for me. 'You must do this or do you want to wear diapers for the rest of your life?!' It took me about 3 weeks to get my head around what happened in these 15 or so minutes. I never felt more ashamed, more alone, more helpless and more ignored at any time ever. I was devastated (and effectively retraumatized).

And now I'm in a really stupid situation:

I need a new urologist, but I can't bring myself to search for one, let alone call one to make an appointment.
I need to get those cancer check-ups, but I get cold sweat at the idea of another person sticking another thing up my penis.
I somehow want to know what's behind the incontinence, but I'm terrified of all the examinations that are still to come.
I want to get rid of the incontince, but I don't want any more surgeries (which right now seem to be the only way possible) done any time soon.

And the worst thing: I somehow feel responsible for the situation that I'm in right now. It's tearing me appart.

This whole thing leaves me utterly speechless. I don't know what to think, who to trust or what to do. Actually, all I want is to be left alone, but that's not an option.
 
kdlstarry9 said:
I am not sute where this belongs. Following my car crash 2 years ago I have been having urinary issues and pelvic issues on top of all my other pains, weakness and shaking etc since then. I have been able to recover mostly from my back pain and much of the pelvic pain and such. But I still have some urinary issues namely leaking slight to moderate amount a lot of time quite suddenly.
I saw a number of urologists and also had many bad experiences with lousy doctors and therapists. Due to urinary retention nonresponsive bladder, pelvic floor issues I had to be catheterized in fact multiple times. And on top of that I underwent many painful procedures from couple cystoscopy to urodynamics and such. Each time my penis and genitals hurt a ton. I tried to push through it all and was in large part by myself dealing with all the pain, doctors, medical bills and whole mess.
Many of doctors laughed or otherwise dismissued my urinary and pelvic complaints as did my family(whom I was very reluctant to even share with)
I was left feeling very alone and ashamed and degraded on top of all the pain I had. I ended up being depressed and developing ptsd from the car crash experience.
Working with my therapists I have been able to relieve some of those flashback of my car crash itself. I still get some but now it seem to change some.

They are largely focused and centered around my urology visits, the pain, shame and helplessness as I laid there on hospital bed having some nurse and doctor sticking a huge tube up my penis. I even recall quite vividly how the nurses laughed and joked about catching me. But I was too scared, exhausted, ashamed and in pain to do anything
Later when I finally got home I end up crying from all of that.

I have scheduled to see a new urologist to help manage my care. From the reviews I read online he seems to be pretty good. I don't expect too much from his end as those medI cation largely gives me nasty side effects.
Has anyone else ever had any flashbacks or sudden terrors/Panic to urological/medical procedure or such?
Click to expand...

This was some really sad reading here. I feel for you.
 
Astatine said:
Hey kdlstarry9!

I completely understand your problems, because I'm in a very similar situation right now. Basically, the last 12 months have been pretty insane for me. First I had massive kidney infection while traveling east asia in august last year. That almost killed me. Then, after returning home, I developed urgency symptoms (I had those before, but not as strong and I thought that I'm just drinking too much coffee) to the point of suffering urge incontinence. Because of that and also because I was still having problems from the kidney issue, my GP sent me to an urologist, who somehow seemed to be very annoyed as brought up the incontinence issue. I got a surprise cystoscopy and he discovered 'something' there. But I shouldn't be too worried, it's small and I'm too young to have cancer. Well, he got that wrong. I week later I was in hospital to get the thing removed and afterwards it turned out to indeed be cancer. Great.

The (almost) funny part of that would be, that no one really seemed to be bothered by the fact that it was cancer, but instead everybody was focusing on how unlikely it is to suffer from bladder cancer (and urge incontince) at age 30. You are too young, it's highly unlikly to have cancer, it's highly unlikly to become incontinent from having cancer, it isn't normal, it isn't 'real' incontinence, it'll go away after the surgery... Well, it didn't go away after the surgery, in fact, it even became worse in the first couple of weeks after and everybody seemed to be quite baffled by that. So I went back to the urologist, but everything I got there was another appointment for another surgery. 'It's standard to do the procedure twice'. Ok, I get that, but it would have been nice to know that in advance. To deal with the incontinence, he just handed me over a sample package for Spasmex and that was that.

So I had another surgery, and a couple of weeks later the first routine cancer check-up (that is, another cystoscopy), where my urologist got almost angry (at me?), because I 'still need diapers'. At this point I was shattered, everything that happened in the last couple of months and the fact that no one seemed to take me and my issues serios just became to much to bear. So went to a psychotherapist (I actually knew her, she helped me a great deal with an issue a couple of years back) and among the first things she said after I finished telling her what had happened was, that I got traumatized by what had happened and that I propably developed PTSD from it (by now it's clear that I have). I had a couple of sessions and surprisingly the focus quickly shifted from being ill to having to deal with urologists, examinations, being exposed but at the same time not receiving the necessary care.

Time went by, I felt a little better with the situation, but then the second check-up was due. The incontinence got a bit better, but nothing I tried (esp. medications and 'pottytraining') seemed to help in any significant way. My therapist asked me, if there was a possibility to postpone the appointment, because by then I was having problems again (like intrusions, not being able to sleep, depression) and she was worried that I wouldn't be able to cope with the situation. She also adviced me to find another urologist, but at that time I just wanted to have it done and get it out of the system. Why I didn't follow her advice is beyond me now, but it would have been better to do as she said. It was the worst experience I had at a doctor ever. I don't want to go into too much detail, but I was in a miserable condition when I arrived there and all he did was making fun of me and trying to shame-pressure into further examinations and procedures, while at the same time not listening to my concerns and issues. I wasn't even allowed to leave the office before an appointment at another specialist (and the next check-up, for that matter) was made for me. 'You must do this or do you want to wear diapers for the rest of your life?!' It took me about 3 weeks to get my head around what happened in these 15 or so minutes. I never felt more ashamed, more alone, more helpless and more ignored at any time ever. I was devastated (and effectively retraumatized).

And now I'm in a really stupid situation:

I need a new urologist, but I can't bring myself to search for one, let alone call one to make an appointment.
I need to get those cancer check-ups, but I get cold sweat at the idea of another person sticking another thing up my penis.
I somehow want to know what's behind the incontinence, but I'm terrified of all the examinations that are still to come.
I want to get rid of the incontince, but I don't want any more surgeries (which right now seem to be the only way possible) done any time soon.

And the worst thing: I somehow feel responsible for the situation that I'm in right now. It's tearing me appart.

This whole thing leaves me utterly speechless. I don't know what to think, who to trust or what to do. Actually, all I want is to be left alone, but that's not an option.
Click to expand...
Astatine, I understand you completely. There are times I think that you have to fail a personality test to become a urologist, the odds of finding one who is even slightly compassionate seem to be so slim.

When I had testicular pain that was so bad I could barely walk, the first urologist I saw immediately focused on the fact that I was in a diaper and decided that was everything he needed to focus on. I told him it was a lifelong problem, and that the pain I was having was the major issue. No joke, he looked me straight in the face and told me my pain was 'insignificant'. If I could have raised my leg hard and fast enough I would have kicked him in the nuts so he could see how 'insignificant' it was. They made me get a follow-up appointment, and I went through the motions with them there in the office, but the next morning I called and cancelled with the receptionist, telling her the doctor had ignored my concerns completely and had no compassion. I never went back to see that idiot.

The second was only marginally better, I think in part due to the fact I risked a lot by not wearing protection when I had an appointment. To me, it was much more important to get the pain (a new issue) dealt with compared to the incontinence. It still took months with the guy to get things figured out. When he did the local anesthetic injection into the spermatic cord and the pain stopped, I broke down sobbing, the relief was so great after so long. What took two minutes to try took us months to get to, and though it only lasted a few hours, it was a huge thing to have it stopped for even a short time.

Again, the net compassion the guy had was close to zero. The surgical option supported by the pain management specialist was one this guy wasn't even willing to consider, and he wouldn't give any reasoning. Yes, it was removal of my testicles, but when I was in that bad of pain, I didn't care. I couldn't get a medically compelling reason to not do the surgery, instead I was told that my only option was a much more invasive procedure that would take much longer with a lot higher risk of complications, not to mention small follow-up surgeries for years to come.

I've had other doctors who have had little compassion that were in different fields, but urologists seem by far to be the most common at having a massive lack of empathy.
 
I also hate dealing with the medical field
 
AnalogRTO said:
Astatine, I understand you completely. There are times I think that you have to fail a personality test to become a urologist, the odds of finding one who is even slightly compassionate seem to be so slim.
Click to expand...

Well, I had a good one, the one in the taiwanese hospital who saved my live. But traveling 11000 miles every 3 months to get a check-up seems a bit excessive. I really hope I can find a decent one here, but I really fear that the story is going to repeat itself over and over again.

When I had testicular pain that was so bad I could barely walk, the first urologist I saw immediately focused on the fact that I was in a diaper and decided that was everything he needed to focus on. I told him it was a lifelong problem, and that the pain I was having was the major issue. No joke, he looked me straight in the face and told me my pain was 'insignificant'. If I could have raised my leg hard and fast enough I would have kicked him in the nuts so he could see how 'insignificant' it was. They made me get a follow-up appointment, and I went through the motions with them there in the office, but the next morning I called and cancelled with the receptionist, telling her the doctor had ignored my concerns completely and had no compassion. I never went back to see that idiot.

The second was only marginally better, I think in part due to the fact I risked a lot by not wearing protection when I had an appointment. To me, it was much more important to get the pain (a new issue) dealt with compared to the incontinence. It still took months with the guy to get things figured out. When he did the local anesthetic injection into the spermatic cord and the pain stopped, I broke down sobbing, the relief was so great after so long. What took two minutes to try took us months to get to, and though it only lasted a few hours, it was a huge thing to have it stopped for even a short time.
Click to expand...

Reading this (and your other post) I'm lost for words. I mean, look at it, what it does to one on a basic level, like not wearing protection just to get the other job done. I was in a similar situation, thinking about the very same problem for days in advance of the second check-up, even considering lying to the doctor. I then opted for a medium sized pad, because I simply didn't want this guy to see me in a diaper (but I didn't want to risk an accident either), which didn't help as it turned out, but afterwards I felt sooo paranoid about that whole issue and myself... stuff like that can take you to the brink of insanity, I guess.

Again, the net compassion the guy had was close to zero. The surgical option supported by the pain management specialist was one this guy wasn't even willing to consider, and he wouldn't give any reasoning. Yes, it was removal of my testicles, but when I was in that bad of pain, I didn't care. I couldn't get a medically compelling reason to not do the surgery, instead I was told that my only option was a much more invasive procedure that would take much longer with a lot higher risk of complications, not to mention small follow-up surgeries for years to come.
Click to expand...

The lesser evil, so to speak. Right now I have the 'choice' between incontinence, an implant similar to what they had in mind for you, or getting botox injected into the bladder muscle every six months for the rest of my life. But when I say choice, it really is more a matter of my doctors being insistent that something must be done, come hell or high water. What I think or feel, apparently, is of utter unimportance. And I doubt this will change, no matter how many urologists I'm going to see.

And I really fear that mentioning my mental issues will either be met with ignorance, ridicule, or condescension.

I've had other doctors who have had little compassion that were in different fields, but urologists seem by far to be the most common at having a massive lack of empathy.
Click to expand...

Signed. I only had the chance to meet six of them so far (one as my regular, the other at hospitals), but one out of six is quite a bad ratio when comes to quality...
 
My PCP sent me to a Urologist after my annual physical, I had developed some UI issues and the urinalysis found blood in my urine, blood + UI = cancer risk. Went through all the tests (you know the drill), and no cancer was present and was given Vesicare for the UI. Continued to see him after that, but it was a waste of time and when I no longer had blood in my Urine, I didn't go back again ! When I was there one time, I overheard one of the other Urologists in the office talking to someone and he said very bluntly "Sorry to have to tell you this on the phone, but it was Cancerous"). I just couldn't believe how impersonal and unfeeling he was. I did see one other Uro after him, and when I was informed that there was still no blood in my urine I was like. "Thanks and goodby". Those guys are really something. The surgeon who did my colonoscopy a few years ago was very different. He was everything Urologists are not, and I actually got a better understanding from him as to what was going on with my bladder and bowel issues in 1 minute, that I ever did with that Urologist. I very much hope you can find one you can hook up with, try checking online reviews of doctors.
 
Last edited:
FunLovingLeaker said:
When I was there one time, I overheard one of the other Urologists in the office talking to someone and he said very bluntly "Sorry to have to tell you this on the phone, but it was Cancerous").
Click to expand...

Yah, sounds familliar. I had to call the urologist, because the lab that did the histology after the first surgery took longer than usual. Almost verbatim: "Yeah, it's cancer. Your next appointment is in march, right? See you then." There is always a way to do things worse, I guess.
 
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