Looking for advice please

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jj21

First of all would like to say, these forums are great and I have gained so much knowledge from them, so thank you to all of you who have contributed!

I was self-diagnosed with peyronies 6 months ago, never remember any particular event or incident which could have caused it. However, I was going through a party phase which included a lot of drug, alcohol, masturbation and sex which almost definitely was a contributing factor.

I'm thirty years old - first noticed a half flaccid bend which curves left and upwards. It's more noticeable when i'm laying down or my gf is ontop. When fully erect there is a very minimal 10-15 degree curve which isn't really troublesome however, the issue is that I cannot seem to maintain a full erection for long. So when I become half erect my penis curves drastically and this has caused a lot of psychological damage. While having sex I have to try very hard to remain stimulated, if not my penis bends inside my gf and I fear causing more damage.

I visited a Uro few months ago, he basically stated if my full erection was relatively straight that I did not have peyronies and that the half erect bend was just due to one side of the penis filling up with blood quicker than the other.

I also have two noodle like veins in a flaccid state which were previously not present, I also have 2-3 small lumps on the underside of my shaft. There has always been very light pain on the underside of my shaft..

The bend is very prominent when half erect - it looks exactly like a peyrnoies curve, curving to the left and upwards towards my belly.

Have been taking the usual protocol of Co10, B vitamins, fish oil multi vit etc... I still get wood and libido is okay..

One other thing i've noticed is that I do not ejaculate much, I also do not squirt out semenn when ejaculating, rather is just drips out.. Am wondering if this is possibly damage to the sperm cord or urethra... All these symptoms availed at the same time.

I'm honestly not too sure if I have lost size, if I have possibly only half an inch to an inch. Erections are definitely more soft and not what they use to be.

Unfortunately where I am there are not many knowledgeable uros out there so am just looking for some advice and recommendations.

If anyone is in Brisbane, QLD Australia and have any urologist recommendations it would be greatly appreciated!!!

Thank you!
J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Hawk

JJ, Welcome to the forum.  Thank you for the kind words and thank you for posting.  Your story and your questions are as big a contribution to the forum as the responses.

My first advice is to read and actually re-read this Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

It will give you some essential basics and an overview.  

Next piece of advice is be  V E R Y  careful with the female on top.  More men on this forum are here from injury in that position than all other injuries with a sex partner combined.  If you slip out and she comes down it can be a disaster.

I would also like to encourage you to fill out your signature line so no matter where you post on the forum, others have some background that will save a lot of time and effort repeating essential history.

Hawk
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

Asian Eagle

JJ21, I have 99% same case, and there are many members who have similar cases, like Flaccid Curve, Less curve or almost straight when fully erect, no pain (sometimes minimal, but for few minutes) etc. etc.

One more thing I observed these symptoms appear in young men (18+ to 35-). Progression Rate is also slow and the thing is somewhat stable.

Was your urologist able to find the hard tissue where it curves?

NeoV believes it's beginning of peyronie's, and these are early symptoms.

Another theory says, tissues are still somewhat flexible, so full erection stretches that area, but over the time they will become hard, and then curve will be same in erect state like in flaccid state. (It sounds so scary :'( )

You talked about appearance of two veins, (this could be mondor's disease), but it should have gone away within six months.

The thing is this disease behaves differently for everyone, it has diverse symptoms, causes and deformities.

What all I can say, keep watching your erections, curves and shapes, go to the different urologists, visit an urologist every month.

And if you think it looks like Peyronie's (which definitely it does), take Pentox. That's the only thing we can do.
My age : 23, Cause : Injury during Sex, Injury Date : 10 Oct 2018

jj21

Thanks for your kind words and advice guys.

I saw a urologist and a well known GP here who has peyronies himself. They both advised that because they could not feel any plaques and because when fully erect that my erection was almost straight - I did not have peyronies but rather suffered from erectile dysfuction.

I am confused and wondering whether I should find a new urologist. The condition hasnt seem to change in six months however, I have continued having rough sex at times. When fully erect with cialis that I bought over the internet everything seems to be okay.

Would any of you guys have any experiences in a condition similar to this? How has it effected your sex life?

Thanks again,
JJ
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

jj21

Asian Eagle  - what did your doctor suggest? Where I am i'm not sure if pentox is available ,have you had much success with it?

I am booked in to see my uro again however, I think he's going to say the same thing, that if when fully erect I am relatively straight that it isn't peyronies... I'm very confused myself.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Asian Eagle

Here's my condition so far :
My first week symptoms and some questions - Peyronies Society Forums

I'm not taking any medicine yet, because docs are not prescribing. But will definitely take it asap.
My age : 23, Cause : Injury during Sex, Injury Date : 10 Oct 2018

Asian Eagle

Can you relate to mondor's disease symptoms, like some veins are more hard and visible or swollen than before??
Although mondor's should have gone away within 4-5 months (max.). But this happens to only those who don't have sex until the condition resolves.

And you're saying you're still having rough sex, so may be it's not getting enough time to heal itself, or more probably it's getting injured again and again.

I won't say don't have sex, but limit it, and have gentle sex.

When you visit urologist next time, ask him if your penis looks like mondor's ?! Or have a ultrasound diagnosis, if you are ok with injection (it was safe for 99%).
My age : 23, Cause : Injury during Sex, Injury Date : 10 Oct 2018

jj21

Asian Eagle - thanks for that. I read your story sounds very similar to my sympotoms except I have less pain.

Upon physical examination the uro also stated no evidence of mondors or plaques felt. I'm wondering whether the urologists are just misinformed about the disease or if perhaps we have a different condition altogether.

Nonetheless if I see any improvement I will keep you updated - what works for me may also work for your condition. I'm actually thinking of trying a handheld ultrasound device, have read a few success stories with that.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

jj21

@asian eagle - do you by any chance have a twist ?

I just saw another uro who seems to believe as there are no plaques and a relatively normal full erectile - there may be damage to the suspendatory ligament which is causing the deviation.

Thought it may be something you would want to consider as well.
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Asian Eagle

JJ21, You said you have less pain. Well in these 6 weeks I had no pain on average. In 6 weeks I felt pain just two times :
First one was a mild pain with a throbing sensation that went away after 2-3 hours.
Second one was strong pain that travelled to abdominal left side and then to left side of my back. It went away after one minute.

So I'm not having any pain, til now.

And about twist
I have two types of curves :
Flaccid Curve : my flaccid penis's head curves to left (I noticed it just one day after my injury). When I have erection, this curve goes away. [Or may be it mixes with erect curve so I can't notice it]

●Erect Curve : [it didn't appear instantly after injury, it appeared after 5-6 days] When blood starts to flow, it fills right side first, so penis curves to left, the curving point is 1-2 inch upwards from base on left side. After erection of right side, left side begins to erect, and thus curve starts to decrease. At fully erect state, it becomes almost un-noticable (5°). If I pull it with slight & gentle hand force, it disappears completely.

Apart from these two curves I have an additional Tilting effect.
When my penis erects it tilts on left from base, or its something like rolling, it rolls from right to left.

Right side seems perfectly supported, while left sides falls down like there's no support. (So yes! There's high chance that my suspensory ligament is damaged on left side).
One more thing, after injury there was an instant mild pain in penis base for at least 4-5 hours. (Another sign that there's a damage to suspensory ligament)
But i read some articles, which say that if a suspensory ligament is damaged, or even if it is strained, you feel a sharp pain while having erection, and in many cases in flaccid state too. But I don't feel any kind of pain.

If it's damaged , there's no way except surgery, and I'm not interested in blood & blade game. I simply support it with my hand.

Some more possibilities regarding Erect curve :
The curving point, where curve begins on left side, on right side at the exact parallel point (1-2 inch from base) swelling begins. The right side feels swollen, spongy and somewhat heavier, in this area I can see a lot of wide swollen veins. Sometimes I think this swelling is causing the curve to left.

Now have a look at my symptoms :
1. Curving : Peyronie's Disease
2. Swollen Veins : Mondor's Disease
3. Discomfort in Pelvis Region (sometimes) : CPPS
4. Tilt & Rolling (Suspensory Ligament Damage)

So I think may be I have all of them, and for all of them there's no f'^+'ing cure.

Sometimes I think, how a stupid position and a stupid girl ruined my entire life.  
My age : 23, Cause : Injury during Sex, Injury Date : 10 Oct 2018

jj21

Sorry to hear that, your symptoms are quite similar to mine except I have less pain.

One good note is that when fully erect we are able to continue having sex properly at least.

I'm not going to give up and will still keep trying to find out what exactly is wrong and how we can cure it.

Doctors seem so useless, they dont seem to know what's going on themselves!
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

james1947

This topic as introductory has ended.
Please continue the conversation on the adequate boards.


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