Bad Experience with Cystoscopy

I am male, currently early 30s.  When I was a child (c.12) I had a cystoscopy performed in a urologist's clinic.  It was one of the most painful experiences in my life.  Twenty years later I still have bad flashbacks to it, and sometimes it's like I can still feel the tube being pushed through various gateways of pain as it goes deeper inside.  It felt like being raped.

Should the procedure be painful?  When I read about it online they say "some discomfort".  Is that just a euphemism?  Should it hurt that much?  Has the procedure changed substantially since the late 80s when this was done?

This was the second time I'd had the procedure done.  The first time was in hospital under general to test bladder capacity.  That was fine.  I'm not sure why it was done a second time under different circumstances.

How often do people get bad psychological reactions to the procedure like this?  Is it common for boys to experience the penetration of the penis as being akin to a sexual attack?  Why is it still affecting me after all these years?

  

[keyzersoce]

I am not a doctor, but have had numerous cystoscopies performed since I had a bladder tumor removed a few years ago.

I have been told that up until a few years ago, doctors used a rigid scope which was quite uncomfortable. Technological advances have now made available a flexible scope, which is a great improvement. I would guess initially you were subjected to a rigid scope which left bad memories.

When I tell my friends about the cystoscopy, the males will always wince and recoil. I believe it is natural for a man to shudder at the thought of a camera being shoved into his penis. However, I do not find the experience that bad and considering I am trying to catch a recurrence of the bladder cancer, it is certainly necessary.

I understand why my urologist offers the choice of anesthesia to his patients for the procedure, but I haven't felt the need to be put under.

[bforni]

I dont know about everybody else, but I just had a cystoscopy a few days ago and it was done with a flex scope and it was the most excruciating pain of my life.  im a young woman, and i dont think it matters if youre male or female, i also felt like i was being violated.  ive had a catheter "surprised" on me before by a urologist and that really has affected my ability to trust urologists.  now after this incredibly painful cystoscopy, which they assured me was not going to hurt too bad, and the pain and bleeding that is continuing and worsening... well, im not really sure what i think about all this.  it's definitely been the most physically and psychologically challenging things ive ever dealt with with regard to dr's and my health.

and btw, why did my doctor not tell me i could have anesthesia?  i asked if i could be put under or numbed and they said it wouldn't be necessary despite his knowledge of my previous, intensely painful, catheter ambush and his own noting of an abnormal degree of sensitivity on my part.  Does anybody have any advice for me?

[rmprdl1964]

Hi,

I have had to many cystoscopies to remember the exact number.
My very first cystoscopy was done at the age of 29, and I have to agree that that was one of the worst experienses that I had to endure of all the cystoscopies that I have had.
I believe that this was caused by a urologist that was realy rough in performing the procedure. Only about 5 minutes after the procedure wich included a biopsy, my wife was told to get me dressed and that we had to leave the recovery room to make place for others. I never went back to the same urologist.
I can honoustly say that eventhough some of the following cystoscopies have been uncomfortable, none of them were as bad as the first one.
I have had both the ridgid scope as well as a flexible scope. Once again the ridged scope caused discomfort but it was not something that I was not able to endure.

Due to fact that I have several medical conditons (one being a neurogenic bladder) I have endured cystoscopies colonoscopies and had my stomach scoped as well. Out of all of these, having my stomach scoped cause me the most discomfort.

One thing that I have learned is trying not to resist the procedure. This way you will expereince the least discomfort. It also seems to depend on the mood of the doctor performing the prodedure as well as what time of the day the procedure takes place.

I should have kicked the first urologist because the treament that I received was not needed. I did not even stop bleeding from the biopsies and were told to leave the area after only 5 minutes.

On the other hand put yourself in the postion of the doctor performing the procedure.

Just over my second last cycstoscopy in July of 2008, I was able to hear what the poor urologist had to endure. In the room next to mine he was working an a female patient while I was being prepped. This female patient screemed and yelled at him, threw instument trays around and finaly the procedure was stopped and she was removed from the adjacent room of mine.

The same urologist who has allways been ver pleasant to me came into the room and tried to make me as comfortable as possible.During the procedure he warned me of actions by him that could cause some pain, yet it seemed mild to me. This man who previously had been cursed by the female patient treated me with dignity and respect. He continued to speak to my during the procedure, telling me what he was doing.

Just since March of 2008, I have had four cystoscopies, none of them were beyond of what I could endure.

It might sound impossible to do, but if you can remain relaxed, the procedure will go well without major discomfort.

Ixion, You had this procedure as a child and I'm convinced that it was very uncomfortable for you, since you were ill adviced  on the procedure. You must also realize that the instrumentation used (scope) might have been large and uncomfortable in a patient your age. Had the urologist taken the needed time with you, things might have been different

I had several procedure performed on me as a child. I was born with undecended testicles which was treated by monthly manual manipulation to try and bring the testicles down to the scrotum. I was around 10 or 11 before my testicles settled into my scrotum. At the age of 8 I was molested by a teenage male in a swimming pool dressing room. What happend there can in no form be compaired to medical procedures that were performed on me. However I can understand what you are saying, because at your age at the time, it seemed like a violation on your person.

It was not untill I got married that I dealt with what had happened to me at the age of 8.

Good luck,

Ron

[ixion]

Thankyou all for your responses and especially for your honesty about difficult topics.  The trend I'm seeing is the importance of the way in which doctors approach sensitive procedures like these.  Keyzersoce, whose doctor seems to keep him informed and offer him choices, is able to sit through the procedure without using anesthetic, while others of us who have been surprised or treated summarily by doctors come out feeling traumatised and ill-used.   The feeling of having no control over what is done to your most private parts is probably the cause of a lot of this stress, as it is with sexual violation (although on a different scale, as Ron rightly points out).  Similarly it can be very difficult to discuss afterwards, which makes it harder to process and increases the feeling of lost control.

I think it can be very difficult to be assertive when dealing with doctors, especially specialists who carry an extra weight of authority.  But we do need to be able to insist on our rights in sensitive situations (without throwing a hissy fit like the other patient Ron described) in particular our right to know what is being done to us and why and what other options exist.

[sometimeshelpless]

This is an old conversation but I'll answer anyway. I can truly understand what you mean by the feeling of being raped. That is awful. I am a woman, also in my thirties. When I was really young they did a catheterization for me many times. And as a child's point of view, it doesn't much differ from a rape. A child isn't able to deal with that kind of thing. I was so young that I couldn't rationalize it at all. Procedures like that can be really traumatizing even for adults.

I've had quite bad phobia, and it hasn't helped much that also when I was a little bit older they still did everything in the same way. Not giving me any feeling of being in control, I mean. That really is the whole point, and if other people just use their power and do something painful and "abusive" to you and not seem to care what you think... That's really traumatizing. Especially when it has something to do with your private parts. I've had really bad psychological and physiological problems because of those traumatic experiences.

I have to admit that I'm still SO bitter and angry of the fact that medical professionals just do thing like that to you, and seem to have no empathy. They are just concentrating on the bladder, and do not care about the person around the bladder. It seems not to be their problem if the person gets really traumatized. That's how it feels. I really would like to know what do those medical professionals think when they perform some operation while the patient is really shocked, afraid and feels like being violated. Is it just money, or what the hell?! Or do they think that children are so stupid that they don't care, remember or something. I can't understand that. I hope that nowadays things are different than in the 80's.

I really have tried to rationalize things afterwards and I've even managed to be able to trust doctors somehow. For example nowadays going to the gynecologist is ok, because the experiences there have been ok and the doctors really wonderful and respectful.

But a while ago I was in another kind of operation (Fess surgery) that was a surprise for me, and a shock. It wasn't not at all as easy as they lied it to be. The phobia got back. I am not able to trust doctors and I feel really bitter, angry, distressed and fearful. Now I have anxiety again, and I am constantly afraid of being forced in some terrible operations. I lost the feeling of being respected, safe and being allowed to be in control of my own body. Even though this Fess-experiment was nothing like those catheterization.