Cavernosogram

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

sonnyjim

Can anyone help me find somewhere in London (UK) that does this test as I cannot find anywhere in the whole of the UK that does it.

This is the last thing I can do to prove I have an issue and nobody does the test, it's ridiculous.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

hope794

Hello sonnyjim, may i ask you some questions about your ED please?

1. Did it appear from nowhere one day or did it got slowly worse over months/years?
2. Have you got any plaque/fibrosis/sign of Peyronie's?
3. Have you got serious troubles in reaching an erection or only in mantaining it? (for example, you feel your blood goes in, your dick gets engorged, but the blood goes rapidly away..)
4. How old are you approximatively?
5. Have you got any other medical conditions such as diabetes, heart diseases, and so on?

Sorry for all these questions, but i am trying to understand since i'm suffering from ED too, and i'm only 24.
26 yo from Italy.
Peyronie's since abt 2014
Abt 20-25° bend, w/ a moderate twist to the left
ED for 4 years and getting worse
From pornstar-like to moderately depressed - still fighting for a solution.

Pfract

Sonny..  Wonder when you will stop this and pursue proper treatment?  

sonnyjim

What do you consider proper treatment bearing in mind I have been going to hospital appointments for two years (two years for two tests hahaha) and I still have no diagnosis.

As far as they are concerned there is nothing wrong with me so they will not offer me any treatment and they are still trying (after two years) to tell me it is psychological despite injections not working, pills not working, no morning woods in a year and a half, nothing.

Ultrasound showed nothing but that was done over a year ago so the last test I can actually do is a cavernogram but I can't find anyone to do it.

I can't get treatment while they keep pushing me to the side and just trying get rid of me.

They will get rid of me soon because I'm pretty close to ending this misery.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract

So you will become another guy like Gollam? Man.. You need help. You need to stop and listen and think about what you are doing.  

sonnyjim

Yeah, I do need help that's my point. The nhs is useless and no diagnosis after two years is ridiculous so it looks like I have to spend more money trying to find out what's wrong with me...

Has anyone had cavernosography test in the UK?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

redbullmaster

I think from memory when I'd ask the London international andrology about it. They don't do it in the UK, but I think Dr franklin kuehhas in Vienna, Austria does do it.

You said you had a normal duplex ultrasound scan of your penis erect, that's the first test.(after blood work)  

They should then do a Sleep monitoring test (NPT) where you go in for an over night visit and they put a device on your penis to check for erections while you sleep.

If they not helping ask for a referral to the London UCLH urology . (unless thats whos not helping)

They deal with this evey day and it sounds like your going to need a implant if tablets or injections don't work.

If it is psychological then psychosexual therapy should be offered as a treatment.

Hows your overall health, are you overweight or have diabetes, as getting your health in check can help.

Also if your not getting erections you should stretch or use a VED on your penis.
As without good blood flow and erections, your penis is in danger of loss of size due to the damage this causes.  

sonnyjim

I use the VED three times a week at least but as soon as I remove it I'm flaccid straight away.

Is this evidence that I have venous leak ?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

redbullmaster

Sounds like a leak to me, but are you turned on when using the VED.
As the VED only draws blood into the penis, if you are turned on and you still lose your artificial erection quickly.
I would say its a leak or blood flow issue, but there are still tests to comfirm this.

You say injections did not work, but when you had your duplex ultrasound, did they give you an injection to make you erect?

Your first job is to get refered to a doctor who takes your issue seriously.





sonnyjim

They did give me an injection but it didn't work properly. Still, they said I am fine and are still after two years trying to put it down to psychological issues.

Who has psychological issues that affect morning woods, spontaneous erections and practically everything for two F^@$!ng years? Wtf.

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

james1947

sonnyjim

You need to find an other doctor.
If you lose erection immediately as you stop VED is a sign of venous leak. I have the same problem.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

sonnyjim

I think it must be venous leak but shouldn't an ultrasound show it though?

I could pay to have it re done but last time they said it was fine and no problem shown.

I'm confused and severely depressed with this situation.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

What is your plan IF they find the venous leakage?
What is your plan if the DDON'T find venous leakage?

I am not sure why you are searching for the answer to that question.  It seems the answer would change nothing because you stated in previous posts you would not trust the NHS to do an implant.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

Having already lost almost an inch of length and half an inch of girth, im not sure I would trust the NHS to do an implant. I'm now like 6.5 inches and I don't really want to lose another inch. If I can keep this length I don't mind who does an implant but I think the NHS wouldn't care if I had a 3 inch dick as long as it's functional.

I don't want to have gone through all of this stress to be stressed about it for the rest of my life.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

I completely understand your concerns.  I would probably share them.  You did not answer my question, however.  

You talk about what you will not do or what you are hesitant to do.
But, have you listed all your options and decided on what you will do?
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

They told me its rare for the NHS to do implants and the only other thing is injections which I'm not comfortable doing because I'm pretty sure the one I did for one of my tests only made matters worse...

I'll be lucky to get this crap sorted out before I commit suicide or something crazy. After two years I am still in the same boat.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

james1947

Sonnyjim

Pfract asked you, but you didn't answer:
QuoteSonny..  Wonder when you will stop this and pursue proper treatment?
So what treatment are you doing?
To stop progressing my Peyronies I made/make VED 5 or 6 days a week, 3*400 mg Pentox and low dose Cialis. I gain back 1.5 cm and the treatment helped me with the ED also.

I don't know your age (not stated in your profile) but before talking about suicide have many other things to do.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Hawk

SonnyJim,  I was not going to respond but I decided to make one more post.  You have over 300 posts which makes you a very high posting member and you have been here well over a year.  Yet you refuse to put a signature line in your profile.  You have not formulated any complex or simple plan, now you talk about suicide again.  Suicide is NOT a plan.  You are here to have a life, to take the load of crap along with the good that each of us is handed and make the best out of it.  People are disfigured, have their sex organs blown off, have cripplings disease, terminal cancer. paraplegic and quadriplegic and have fulfilling lives.  All it takes is a plan.

I can't even suggest a plan because I don't know your age, I don't know if you are in a long-term relationship, I don't know your interests or education, I don't know what kind of support group you have, I cannot remember if you have erectile dysfunction or just Peyronies Disease.  If you have Peyronies Disease I cannot remember the degree of deformity without reading back through all your posts.  All I know or can recall about you from the other 15,000 members is that 1. You live somewhere that uses NHS  2. You refuse to fill out a signature line  3. You are a major poster with some sort of problem with your penis that  NHS has not solved.

We are here to educate and support you.  We are here to help people formulate plans, but running negative, defeated thoughts through your mind and then typing them out every day is not a plan.  You would be better off to say "I am going to ignore my penis for a year or so and and learn to paint, or play guitar, or visit a children's hospital.   It is your job to give us something to work with.  Until you care enough to do that there is nothing I can do.

Help us help you.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

Quote from: james1947 on November 13, 2018, 01:43:03 AM
Sonnyjim

Pfract asked you, but you didn't answer:So what treatment are you doing?
To stop progressing my Peyronies I made/make VED 5 or 6 days a week, 3*400 mg Pentox and low dose Cialis. I gain back 1.5 cm and the treatment helped me with the erectile dysfunction also.

I don't know your age (not stated in your profile) but before talking about suicide have many other things to do.

James

In reply to your post James and Hawk. Here are my symptoms:

No curvature (could be due to manual stretching since first pain)
Loss of size most notably flaccid size which is never how it was before probably an inch and a half less length and about an inch less girth. Just doesn't feel like a normal penis.

Lump inside the middle of my penis which feels like a line going horizontally across. Another lump which goes half way around my shaft near the base of my penis.

Severe ED which worsened over time (pills used to work until lumps got harder)

Loss of like 99% of sensation. Cannot get erection without highest dose of Viagra and constant manual stimulation. If I stop it goes down immediately.

Blood flow to glans is affected and I have white spots there from a lack of circulation.

There's too many symptoms to list but my biggest annoyance is that if I was treated when I first needed it with Pentox etc I feel like it could of been prevented. This is bad...

Currently taking 3*400 Pentox or sometimes 2*400 and 5mg Cialis for last 6 months.

This has been going on for 2 years but in the beginning I still had sensation and was responding to pills. Now, nothing really works.

No spontaneous erections or morning wood. Noticed that before this morning woods were getting less and less "full" until now, nothing.

I feel like my dick has just wasted away and I don't know where I will end up and still I have no diagnosis.  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

james1947

Sonny

I read many things about the NHS. I am proposing you to try and see a specialist in his private clinic. I know it costs money but if it is important for you (I know it is) you have to find the finance for it. Specialist I mean an Urologist that specializing in Peyronies and ED because most Urologists are basically like plumbers :) (some of very good, I had some surgeries in the subject)
I am proposing you also to start VED. It will induce much needed blood flow to your penis and it may improve the sensitivity also. It improved and improves mine. Just be careful not to over-pump.

Again, I don't know your age, but me at 71 I am not ready to give-up :)
James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

sonnyjim

Just had the NPT test and failed as I expected.

Injections or penile implant they have offered me.

Is there no way to just do a surgery and remove the scar tissue rather than giving me an implant? I don't get why there are no surgeries to do that.

Would removing the scar tissue improve my erectile function? It seems like it should do, to me, but I don't know.

Very depressed and as much as implants have been bigged up on here I feel like I'm too young to go down that route but I will if necessary I just want to know what other options I have before taking that one as it's a bit final.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

I think that medical doctors just gave you your options.  The questions you just asked in your post would have been excellent questions to have on the list of questions you took with you to the medical appointment.

I am not a doctor but I know of NO surgery that is successful in restoring erectile ability other than an implant.  Erectile functioning is a very complex process involving nerves in the brain, spine, pelvis, and penis - Arteries, and veins, many chemical processes, elastic penile tissue. All of these are intricately associated with and dependent on each other. If any of these fail the erection does not happen.  For instance, MANY of these processes have to happen just to tell the arteries (deep in the penis ) to dilate and let in increased blood flow.  That is only one step.  That blood flow has to be fast enough to begin to overwhelm the output of the veins so the fullness of the penis begins to squeeze and constrict the veins (near the surface of the penis).  This squeezing constricts the output, even more, resulting in an erection.  The more the erection, the more the veins are constricted, resulting in more of an erection.  It is a cycle until the arteries stop dilating and the process reverses.  

Trying to go in, cut, patch, without any way to test the entire process to fine tune it while you are in there just does not work.  While doing all of this you have to be careful to avoid as many sensory nerves as possible.

You have made great progress.  You now realize there are no perfect options but several available options to choose from.  
1. Wait, do nothing and redirect your focus (accept risks of atrophy)  
2. Use injections which are usually painless, and effective, but carry risks.  
3. Get an implant from the best doctor possible and realize the associated risks including infection or device failure and limited life of the device.
4. I assume a VED is an option as well. - Few risks but convenience issues especially if not in a committed relationship.

Best wishes as you ponder and choose the option you are most satisfied with.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

Thanks for the reply Hawk...

I know I will eventually have to have an implant which i am trying to accept but I do still have some worries about it.

1. Where my scar tissue is located affects sensation and also means I cannot ejaculate fully. Do you know if this can be fixed during the implant surgery? It would be disappointing to have an implant but not feel anything or still not be able to ejaculate.

2. In the mean time, while I wait: will VED, Pentox and Cialis help maintain the size that I have and stop my penis from shrinking any further?

3. And the main worry is do I let the NHS do the implant. Yes it will be free but I don't think they care much about size lost in the final result the same as other surgeons, like yours for example.

Any advice would be appreciated  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

1.  No one goes into surgery on their penis or many other surgeries without some worries.  That is a normal part of life.

2. I do not know.  I wonder if some of that is stress and distraction from concern about your penis.  Much stress is not registered on a conscious level but it still affects our body and our mind.

3. When you discover who your surgeon will be, ask the questions I posted earlier and use the answers to help you decide.  Since I don't know anything about your resources, schedule, work or relationship situation or even age,  it is hard to give any further advice but this should be sufficient.

1. that will promise you a minimum length prior to surgery and documents your length prior to surgery. (Documenting length prior to surgery is a must)
2. that does not need or want a company rep in the operating room with him.
3. does over 100 implants a year.
4. implants both AMS and Coloplast
5. takes several implants in the OR with him
6. Has actually removed an implant during surgery because he thought he could get better results with another implant.
7. Tries to avoid the use of RTE's
8. Can tell you HIS infection rates (not industry average)
9. Is accessible to you for questions as you are healing

You might not get perfect answers to all of these but it helps the surgeon understand your concerns and expectations and it helps you have realistic expectations and helps you make the decision.

Documenting your current length by the doctor is a must so that it is part of your medical record.  It gives an official pre-op size and that holds the surgeon's feet to the fire.

No matter how long you think about this you cannot think up more options.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

I'm not trying to think up different options, I know now that this is what I will eventually have to have done regardless I just want to get the best results.

There's no benefit in having an implant if your going to lose more inches and end up with an inflatable 3 inch dick that will eventually be a waste of time due to suicide - but I know what you're saying...

I don't think the ejaculation and lack of sensation is due to stress because it's been a consistent problem for the last year or more, the scar tissue is on the bottom of my penis and it stops it from expanding because it is like a ring that goes around it. I wondered if maybe they would remove this during the operation and I would regain that. I will ask though...

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

Quote from: sonnyjim on November 16, 2018, 12:45:35 PM
the scar tissue is on the bottom of my penis and it stops it from expanding because it is like a ring that goes around it. I wondered if maybe they would remove this during the operation and I would regain that. I will ask though...

That would make it a much more complex operation requiring a great surgeon.  A great high-volume surgeon would keep you from losing ANY size.  Not sure how much you have now but the VED, traction, Pentox, gentle heat are all your best friends until surgery.

You should try 1/2 of a 50 mg Trazadone with a snack at night for sleep and NTE 's.  Your doctor will likely prescribe it.  It is cheap as dirt.  It is used in very small doses for a sleep aid but the side-effect is NTE.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

I've got like 6.5-6.75 nbp don't really want to go below 6 inches to be honest...

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hawk

You will certainly not lose 3/4"neither even a decent surgeon.

You do however need to refer to BPSFL and BPEL

Non bone pressed is very subjective and varies with weight gain and loss
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

sonnyjim

I'm pretty skinny but I'm not too sure about how to measure bpel because if I push in I will get a different measurement each time depending on how much force I use...

When you say 'neither' do you mean even if I have a bad surgeon I won't lose 3/4 of an inch?

I would like to see somebody like Dr Eid but to be honest, the amount of time it would take me to raise that money I would probably be worse off...
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

TonySa

Bone pressed doesn't vary if EVERY time you push all the way to the pubic bone and cannot press ang further
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.

Hawk

Bone pressed means exactly that.  You press to the bone.  As Tony said, it cannot vary.  Because while weight gain, swelling, fluid retention, can change the skin and the pad where the penis meets the body, Non-bone pressed is useless and it is useless when making a case for size loss to a surgeon.  The pelvic bone NEVER changes.  You press hard enough to get the absolutely longest measurement you can.  That way there can be variable.

I did not say you would not lose 3/4" with a bad surgeon.  I guess you could potentially lose your life with a really terrible surgeon.  I said you would not lose 3/4 of an inch with a decent surgeon.  With a great surgeon, you will lose nothing.  Having said that, If I personally had to choose between an 8 " penis that would not get reliably erect and a 5" penis that never failed, I would go with the 5" one.  It is the difference between, relationships, marriage, satisfying sex for both partners, Vs stress frustration, and is no better than having no penis.  That's my view.  Any partner would completely agree.



Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

SonnyJim,

Check out this topic.  It is a guy from the UK that had an implant less than a year ago.  He might have some useful information for you if you ask specific questions.
U.K. Implanted - Peyronies Society Forums
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums