Ultrasound and Nocturnal Penile Tumescence Test at UCLH

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PeetyPeet

Hi guys,

It's been a while since I've been on the forum. Things have been busy, and besides, I was holding off posting while I tried to figure out a way to post my MRI and ultrasound images. Alas, life has taken over and I'm not sure when I will be able to post them.
So here's my accounts of my ultrasound and NPT tests at UCLH which will perhaps be useful to someone.

Ultrasound


This went considerably better than my MRI. My appt was on time and unlike my MRI I was lead into a private room to receive both the caverject injection and the scan.

It was the same consultant / radiologist who performed both the injection and the scan. He was a pretty nice guy who seemed to know his stuff. We chatted briefly about my MRI and suspected CF, to which he said 'Trust me, you don't have Corporal Fibrosis', so I suspect he was also the guy that perused my MRI scan results.

He first performed the scan on me flaccid and kindly allowed to me see the images on screen, explaining how he was looking for plaques. There was one area of stark white which he saved, explaining that if this was still evident once I was erect it would most likely be plaque.

He inject me with 15mg at the base and recommended that I massage it through to the tip in a one-way slow masturbatory motion. He left me alone for 15 mins and a nurse sat in the room at a computer (a curtain had been drawn between us). I called out once the drug had taken effect, which it did very well this time (unlike during my MRI scan where it had no effect at all), and the nurse called the consultant to come back in. I mentioned that I didn't know to massage the drug in during my MRI and he said that while it's not in the drug instructions, he's learned from pro experience that this yields better results. And indeed it did, I had a full erection for 3 hours following the scan and was actually starting to worry that I'd suffer priapism.

He performed the scan again and the suspected plaque was no longer evident. He speculated that this was just the tissue tightening around the injection site. He then scanned my undercarriage to check for arterial in-flow. Initially he thought it was a little weak but still within normal parameters, but then moved the scan-gun around a bit and said actually it was reasonable. I didn't enjoy hearing sounds one normally associates with pregnancy scans, particularly in light of my wife's recent miscarriage.

But that was that. The consultant summarised that everything was in order and there was nothing anomalous as far as he was concerned. Which leaves me feeling perplexed as nature of the internal woodiness that can clearly be felt and has been identified by two urologists, including My Minhas. I'd welcome any suggestions as to what this is.

I got dressed and was given a sheet warning me when to go to hospital should I still have an erection and noting the dose of caverject I'd received. Confusingly the nurse said to go to A&E after 3 hours, the sheet said 4 hours and reading online priapism is sometimes diagnosed only after 6.

Okay then, NPT (Nocturnal Penile Tumescence) Test


In a nutshell this checks that you're getting morning wood okay.  Good morning wood = psychologically based ED. Bad morning wood = organic ED. This was important to me since following years of fighting the pro's assumption that my ED is psychological, I'm keen to demonstrate that it is not.

The appt letter I received requests that you call the urology dept within two weeks of the letter being sent to confirm you will be attending or you will be discharged. As we moved house recently I almost missed it. It also requests that you call a mobile number on the day of the appt to confirm that there is still a bed available. The mobile appears to be carried round by one of the nurses on the ward.

EDIT: I wrote this the morning after the scan and spend a few paragraphs moaning about confusing times at the hospital. If you want to get straight to the test, skip a few paragraphs down.

I got to the hospital at 8.45 pm for 9pm appt. The letter does not give directions, just says to go to the front desk, which I did. The chap at reception was having a loud personal phone call. I stood waiting for 5 mins, got bored so went to the urology outpatient desk, but they were unable to help and sent me back to the front desk. I stood and looked at the guy still on his phone for another 5-10 mins, he just stared right back at me. In the end I called the previously mentioned mobile and they directed me up to the 2nd floor which is the urology surgical and short stay ward.

There was no-one at the small reception desk but a sign stated that should no-one be around go through the doors on your right and find a nurse, which I duly did. I found myself in the women's ward, which was quite busy, and no nurses around, although I could hear from behind a curtain someone complaining about the treatment of their mother at a different hospital and demanding that the same not happen at UCLH. After a while a female nurse appeared from round the corner and looked a bit shocked to see me. I explained why I was there and she didn't understand at first then directed me to the ward at the other side of the reception desk which was the men's ward.

I got the attention of a male nurse in the busy ward. Again he didn't seem to understand what I wanted at first and then twigged and smirked. Perhaps I'm being a bit sensitive here. Anyway, he led me to a private bedroom at the back of the ward and offered me a chair and said I was welcome to watch TV while he went to get another nurse. The other nurse came in, said it was the wrong room, and I was lead back to the female ward and put in a room just off the corridor. This one had an en suite toilet, for which I was grateful as I often need to urinate at least once in the night.

Nonetheless, I felt guilty that I was getting a room to myself when there were plenty of people worse off than myself with just a curtain separating them from their neighbours. I was left in the room with the rigiscan instructions, which I'd already had a good read of as they were sent with the appt letter. About 20 mins later a female nurse came in with the rigiscan and explained very briefly which bit went where. Then I was left alone, I assumed, for the night.

The rigiscan is about the size and weight of a Sega Game Gear, for anyone who liked video games in the 90s, with two wires coming out of one end and an on/off switch on the side. The wires have loops at the end which you affix to your base and tip of your penis. You strap the unit to one leg with a surgical sock. When you turn on the machine, the loops slowly tighten. They then tighten and relax at 15 sec intervals for the duration of use, and by this method measure the extent to which you engorge and presumably, the length of time you engorge. Perhaps I'm missing something here, but despite the name 'rigiscan' I can't see how this method could measure the rigidity of an erection, it simply measures the diameter and circumference of the penis at the base and tip. You can turn it off mid session for up to 15 mins if you need to urinate.

I got myself hooked up relatively easily and then got myself on the bed. I had a read of my kindle for perhaps an hour and then lights out. The rigiscan is cumbersome but not unpleasant. It's nonetheless distracting so it took me quite a while to fall asleep. Just as I was dosing off, at about midnight, a male nurse comes into the room and asks just to check that I'd set up the rigiscan properly. He expressed surprise that I'd already tried to get to sleep. At midnight! One must also bear in mind that the appt states you need to leave at 6.30am the next day. That's quite a small window in which to make an assessment that requires sleep.

Finally fell asleep an hour or so later and was woken by a female nurse at 6.15am. I was up, dressed, out of the room and ready to hand over the machine by 6:30am. Except the nurse who had woken me had disappeared and no-one was around. Went to the male ward and saw a male nurse from across the room who gestured that I should leave the machine just to one side on a cabinet, which seemed strange given how expensive I'm sure this thing is. I hope some kid hasn't picked it up thinking it's a Sega Game Gear. What if they've tampered with my results.

And that was it, out the door. I was surprised that there was no assessment of how well or long I'd slept. I could have stayed up all night to rig the results. Unless they check in on you periodically, which if so, I didn't notice.

So there you go. I hope this is helpful to someone. My follow up appt isn't until December but I'll post the results when I know.

Best

Peety

rich68

Hi Peety

Thanks for your accounts of the 2 procedures, very helpful for anyone preparing for this.

It sounds like your radiologist knows what he is talking about so I really hope he is correct. If so, I think this is positive to hear. Mr Minhas will have to come up with some explanation. I am going to see if I can find out more about how CF is diagnosed and how accurate the doppler scan is for this. Perhaps it's worth getting another opinion from someone like Dr Kuehhas (I believe he and his colleague Dr Zacharakis have experience in corporal fibrosis). I also wonder if it could possibly be a pelvic floor issue (as described by obitoo on the hard flaccid forum while it was online)?

The NPT results will be interesting. I wonder how bad it has to be before they consider it abnormal. It was funny to read that the nurse came in at midnight and was surprised you had already tried to get to sleep. You would think they should have been able to guess this from dealing with different patients.

My own GP thought that a lack of morning wood could still be psychological and stress related. At the time, I came away from the surgery feeling reassured and my morning wood improved considerably more or less overnight. I couldn't quite believe it.

PeetyPeet

Hi Rich,

I think an MRI is considered to be the best scan for abnormalities in tissue, such as C.F. The report read that I had no 'wasting'. I assume by this they mean atrophy. It can be confusing when reading online as expressions such as 'wasting, atrophy, fibrosis' seem to be used interchangeably.

The doppler ultrasound can detect plaque on the tunica albuginea and if I understood what I was seeing on the screen correctly, perhaps issues with erectile tissue. I think it's best for detecting issues of inflow however.

I think a second opinion from someone like Dr Keuhhas would be a very good idea...I'll just wait to see what Mr Minhas says (or rather his registrar) following my NPT test. Now that I know how to manipulate the caverject for best effect, I'd like another MRI.

Regarding the threshold for abnormalities in nocturnal tumescence, I think it would be quite high. During my MRI I had a 30-40% semi at best and this was considered a good response to caverject. I will be disappointed, but not surprised, if I am told that my penis engorged slightly for 2 mins at about 3am and therefore everything is fine.

Perhaps psychological issues can affect NPT, however, over 10 years of consistent symptoms, in which there have been both highs and lows, has convinced me that there is no psychological cause. Although I'm sure they meant well, I'm not sure that your GP should have said that. Given the intangible and opaque nature of mental health conditions, I think that with ED, physiological causes should be ruled out first before potential psychological elements are addressed. At the moment it seems to be the other way round. Sorry, getting on my soap box here.


Pfract

Hi PettyPeet!  i admire your dedication to try to discover the root cause of your ED.Not many people go through so much hassle, with so few results...

As to your results of the ultrasound they didn't give you any report? Because you should know how is the flow in your arteries to see if you have ED, venous leak.... !?!! Also... they should give you a drug injection to bring your injection down right there in the office? I think it's called phenilephrine.... Instead of walking around with what almost was a priapism...

The report of my ultrasound is on this board, if you want to see it. Also... i am surprised, as to why you would'nt go to the US to see a proper sexual medicine doctor and fully address your situation.... Less than 2500 € and you can go to California...

PeetyPeet

Thanks Pfract. I won't give up.  ;D

I know from a previous scan that I do not have venous leak. The radiologist did test inflow and it appeared to be fine.  

It doesn't appear to be standard practice in the NHS to reduce your erection with injections. I don't know why. The caverject they use is exactly the same as that used for recreation. I agree, reducing your erection before leaving would be better practice.

I may very well hit the states, or see Dr Kuehhas. My current urologist (well, technically it's one his registrars) is supposedly a world leader in andrology. I'd be interested in his conclusion even for interest' sake.

Best

Peety




Pfract

Dude.... suposedly.... is very different from being one. You do know, that the best medical care is found in America, right? sure, you pay for it... but... tell me what is he known for? i'm curious.

And i tell you this because i feel amazed at the way you are addressing this. Doesn't it make sense to go to A SINGLE PLACE, anywhere in the world where it might be, that would do every single relevant test to diagnose the exact cause of your ED and set a treatment path so you can decide on what to do? instead of letting time to by and runing from doctor to doctor, spending money, having no answers, and casting only more doubt on it?

here... Sex is doctor's life's work - CNN.com

I am in no way affiliated by him, and i am not even a candidate for the surgery i was hoping to be, but i know that you can get some help there and it's so easy to get an appointment.

Think about it... for your own sake!

PeetyPeet

Hi all. Had my follow up appointment to get the results of my NPT scan today. It was a telephone FU, and after the usual routine of them not calling me and my having to call every number I could get my hands on to chase it up, I was told the following:

1. I had 1 under par nocturnal erection and 2 standard ones, one of which apparently lasted 48 minutes.
2. These happened during deep sleep so I wouldn't have noticed.
3. They consider this normal and will be recommending to my GP that I am brought off my daily Cialis prescription.

I have a few issues with this:

1. In a normal night's sleep I thought 4-6 nocturnal erections were considered normal.
2. The rigiscan records increases in circumference of the tip and base of your penis - I don't know how this can accurately measure rigidity. I could have had a 48 minute non-rigid, semi-erection.
3. I'd been taking daily cialis 10mg up until a couple of days before the test. They claimed it would be out of my system completely by the time of the test. I'm not sure I agree.
4. How did they know I was in a deep sleep? - I wasn't connected to an ECG.
5. None of this explains over 10 years of consistent symptoms - no erection during masturbation, sex, or at night (to the best of my knowledge). The woodiness one can clearly feel in my penis. Also the extreme turtling I experience at the slightest exercise, which has worsened as my ED has worsened. Finally my loss of flaccid length and general tightness I experience. To take me off regular cialis seems pretty harsh in my view

Look, I don't want to sound like I'm in denial here, but it feels like the benchmark for 'normal' is set pretty low and there's no appreciation of any kind of spectrum. Did you get a partial erection once in 1995? Well, you must be okay then.

Anyway, reading this, what do you guys think? Any thoughts?

Best

Peety


Pfract

Get a camera, sleep naked and record yourself and you can check your erections... Other than that, I an unsure..  

PeetyPeet

You know, I think that's a very good idea. Next time the wifey is away :)

I found this interesting:

Do I need any specialized tests?, What are nocturnal penile tumescence (NPT) studies?, What is the RigiScan? - 100 Questions & Answers About Mens Health: Keeping You Happy & Healthy Below the Belt - Academic library - free online college e textbooks

"The RigiScan measures only radial rigidity, that is, rigidity across the width or circumference; it does not measure axial rigidity, or rigidity across the length of the penis. Axial rigidity is the most important measurement in predicting vaginal penetration because it is used to assess the ability of the penis to stay straight despite pressure against the tip."

PeetyPeet

Hi all,

For anyone still interested in the NPT test, I found this in the European Association of Urology Guidelines for Male Sexual Dysfunction. One of the authors is Ian Eardley, leading urological surgeon and 'The Daddy' (not my words) of penile health research.

".3.6.1 Nocturnal penile tumescence and rigidity test

The nocturnal penile tumescence and rigidity assessment should be done on at least two nights. A functional
erectile mechanism is indicated by an erectile event of at least 60% rigidity recorded on the tip of the penis that
lasts for > 10 min [61]."


Three points to make based on my own experience:

1. I wasn't tested over two nights.

2. If indeed the average occurrence of NTE's is 4-6, or even 3-6 a night, the benchmark they set for 'normal' is stupidly low. One semi-erection measured through the rigidity of the tip of the penis that lasts for greater than just 10 mins. Surely anyone who isn't 90-100% impotent would be considered normal with these parameters.

3. Not to mention the inability of the device to measure axial rigidity. The guidelines do not acknowledge this.


Link to guidelines: http://uroweb.org/wp-content/uploads/14-Male-Sexual-Dysfunction_LR1.pdf

Best

Peety

JohnWright

That the good doctor is the "daddy" of the speciality must have been lost in translation somewhere. Being the "father" of a specialty is not an uncommon phrase.

Your point about axial rigidity, I agree.

Overall, your experience is just another reminder why individuals must be in control of their own general wellness, and view surgeons as consultants rather than all knowing gods - -  which is their general preference.  

Pfract

Well..  You are pretty keen on this test, don't know why. Sometimes the path is so clear, and we don't want to see it. Shame on you.  

mischa

Peety. What some doctors forget is if after medicating you you are responding in a way they feel is "normal" then the response is due to the med and should be considered an achieved response to the treatment. My testosterone level was barely above normal with 200mg monthly. Rediculous! My free level was in the toilet. So finally my urologist said that's not acceptable and put me on 200mg every other week and told me I could take100 a week if I wanted. He said he didn't like the peaks and valleys of traditional treatment and at my age just normal isn't good enough. Ask your doctor if having erections aren't due to the cialis then why would he stop it. Your getting hardons cause your taking it dahh! And it sounds like even then your not getting the kind of hardons you need to be getting. I'm still not at a point where I'm getting any, day night or evening hardons so I'm hanging in there. Don't let your doctor push you around. If your not happy find another, that's what I did.
Mischa😕

PeetyPeet

Thanks guys.

Quote from: mischa on January 18, 2017, 04:04:42 PM
Peety. What some doctors forget is if after medicating you you are responding in a way they feel is "normal" then the response is due to the med and should be considered an achieved response to the treatment.

I agree. I received no instructions regarding medication or how I should behave before the NPT. My last dose of cialis was 10mg 48 hours earlier. I mentioned it to them in my FU appt however they said it would be out of my system. I know guidance is that cialis can stay in your system up to 36 hours, but in my experience it can be a little longer, especially if I've been taking daily amounts up to the point of stopping, which I had. I'd also had small amounts of alcohol and caffeine earlier in the day. I stopped VED and pentox 2 weeks prior.

Alas, none of this really matters when the bar they set for normal is so low anyway. I suspect I would have 'passed' even if I'd not had any medication for months.

The last piece of advice I received from Minhas' registra was to go back to them when 20mg cialis had stopped working. I'm not sure how long they've been running the NPT test, but I'd be interested to know how many men deemed 'normal' had since returned to them because their ED had become more severe.

Unfortunately, I've already been round the block a bit and Mr Minhas is currently the best the UK has to offer for ED. Alas, I believe most UK urologists would defer to his opinion. As pfract has suggested the next step would be to go abroad / see an international specialist. I'm unsure as to whether their diagnosis would be recognised by the UK's NHS so the end result would be the same: paying for my own treatment / medication.

Quote from: JohnW on January 18, 2017, 09:30:32 AM
Overall, your experience is just another reminder why individuals must be in control of their own general wellness, and view surgeons as consultants rather than all knowing gods - -  which is their general preference.

I agree. I just wish that other medical professionals - such as GPs - would be a little less skeptical of their patients' own assessment of their condition. I have a chip on my shoulder about this - my grandmother died of bowel cancer. Her GP refused to take her symptoms (not to mention family history) seriously and by the time she reached a suitable consultant it was too late.

Quote from: pfract on January 18, 2017, 09:34:01 AM
Well..  You are pretty keen on this test, don't know why. Sometimes the path is so clear, and we don't want to see it. Shame on you.

I'm not sure I follow you. If you mean to say that I have a bee in my bonnet about this test, then yes, I do. This test is flawed and there are some serious implications:

1. It is a concern that a patient with >10 year history of consistent symptoms and visiting medical professionals can be written off in a heartbeat, purely based the results of a test that was not performed as per guidelines and has documented flaws.

2. I've read this test is sometimes used in legal situations. One wonders if one example could be allegations of rape, where the defendant's defence is that he is impotent, and this of course needs to tested / proven. If a man with a similar medical history as myself was accused of rape, his impotence would be a logical - and honest - defence to take. But this test would seemingly show he was capable. I find that a scary thought.