Peyronie's sufferer at 22 & in despair..please help

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Nellah

Hey guys,

I'm new to the forum here. 23 years old, and ashamed to say that I have just begun addressing symptoms which began to rear their early head about 4, 4.5 years ago. This is my first post, but I've been reading for a few months, gathering information, and trying to gain a better understanding of what I'm experiencing.

I don't know what good it does to mention these, as none of them are uncommon for someone dealing with Peyronies Disease, but I am depressed, self-conscious, confused, and ultimately exhausted by this condition. Many forum members have mentioned dealing with this condition as a 'second job', and truly it is. As a young adult, how am I to tackle this disease head-on with steadfastness and confidence, knowing that my early 'glory days' are riddled with a crippling condition, and that every advancing year will offer only more of a challenge as my body ages and becomes less proficient in its healing and inflammatory-response? This IS a progressive disease, right???

Before I continue whining, I'd like to thank the members of this thread who make an active effort to spread the word about known and knowledgeable urologists capable of diagnosing and treating this disease. As a result, I found one such competent urologist in my state who started me on the path to treatment, and, though I've found moderate success, I'm here to continue learning and hopefully further improve my condition. Again, thanks to these members, and to all active members who share their stories and offer insight and expertise on how we can retain our manhood.

Background of my Peyronies Disease:

I began masturbating at a very early age (age 7-8), and continued this habitually on an average of 1-3 times a day throughout my childhood, adolescence, and into adulthood. I had a habit of flexing the muscle responsible for stopping urine flow, or "flexing" the penis (is this the PC muscle???) while masturbating, resulting, oftentimes, in a very delayed ejaculation (due to the muscular interference and closing-off of the urethra) in early adolescence that would seem to trickle out several minutes after orgasm. At the time, I was not familiar with ejaculation, and did not know what this was. I assumed that this was merely residual urine seeping out without cause.

I experienced adverse effects because of this: a spasm, or a twitching of that same flexing muscle that happened within the body of my penis: this has been ongoing for a good decade & a half or more.

In highschool, when puberty had run its course, I can recall what I now deem a particularly dangerous habit of flexing the erect penis (an erection often brought on by a full bladder) against the pressure of my pants, resulting in a tingling sensation that ran through the penis and the testes. At the time, though this resembled pain or adverse pressure on some level, it also registered in my mind as a type of relief or pleasure, and so I did not cease the behavior.

Up until about 17-18, I had very responsible sexual tissue on my penis; erections and powerful orgasms were easily achieved through moderate stimulation of many parts of the penis (mostly half-way up the shaft). Around 18-19, I suffered a sudden blow to the crotch area, primarily to the scrotum, which resulted in throbbing pain that lasted for months.

Within that same several-month time span, I went to visit a urologist after a masturbatory incident that resulted in a swollen, painful, and puffed-up area on my foreskin that lasted a couple days, and several incidents of a clicking or very, very miniscule little pop somewhere at the deep base of my penis.

Note: my foreskin is not long enough to 'glide' over my glans...barely enough so to reach just below it (whether this is related or not, I am not sure), although, despite what I once thought, I do not think that my foreskin is causing tight or adverse erections, but it may be partially at fault. I'm not sure.

The urologist examined my penis, and diagnosed me immediately with 'scar tissue', and said 'Yep, you have peyronies. It's a commonly uncommon disease, but definitely uncommon at your age, and really can't be helped. Sorry. Take Vitamin E.'

...Exactly. Same cop out load of crap every uneducated urologist offers to its miserable and needy Peyronies Disease sufferers.

So I went away discouraged, and pushed the despair deep into the back of my psyche, and masturbated like I always did, pretending there was no issue with my penis.

- - - - - - - - - - - - -

At 22, I had my first sexual encounter, and the results were, well, horrifying. I discovered that, in addition to ongoing residual pain in the topside (dorsal???) of my penis where the corpus Cavernosum lie, I couldn't get hard to save my life! I could barely, BARELY achieve penetration, and even then, the sensation of sex was negligible to the point of sheer panic on my part, and upset and self consciousness on the part of my sexual partner...a beautiful girl, but one already dealing with confidence issues and feelings of not measuring up to a miscellaneous standard.

Needless to say, my first time fell short of what I had hoped, but in ways completely unanticipated. During masturbation, achieving a so-so erection has never been difficult, but I cannot recall a time when I could EVER achieve an erection beyond a semi-erect state.

***I've read a lot on this forum about erection angle, and this has depressed me even further...at 23, I barely measure up to directly perpendicular to my body while sitting & standing, and this is only achieved when I "flex" the penis, or when I've masturbated enough to get to this point. Typically, my semi-erect penis hangs a good 10-12 degrees beneath perpendicular from the body, unless otherwise (as described immediately above)

With haste, the blood will leave my penis, leaving me completely un-erect, or only mildly, mildly erect. I would say that without conscious effort, i.e. "flexing" and continuous physical & visual stimulation through use of one's hand and, excuse my vices, any explicit paraphernalia, I cannot maintain the erection.

Current medications: cialis (which has helped, but due to finances, I take it infrequently), pentox 400 mg 1/day, l-arginine 500mg 1/day, vitamin E 400 IU 1/day.

Am I on the right track? Are these enough? I've seen much higher doses from other forum members, and I'm beginning to question the effectiveness of my regimen.

I needn't go into detail about my inconsistent diet (I'm in reasonably good shape, but not nearly eating or exercising as a I should...I'm debating an entirely vegetarian diet in efforts to tackle Peyronies Disease head-on in every way that I can).

I am learning now that my Erectile Dysfunction is likely not necessarily a byproduct of my Peyronies Disease, but might in fact be a precursor if, ALL THIS TIME, I've been 'flexing' in order to achieve an erection that has some presence against my hand while masturbating.

Losing my virginity showed me very quickly the true state of my supposed erection, as intercourse seems to preclude the ability to really accomplish an erection through these artificial means.

Symptoms I'm experiencing in addition to those described above:

-Pain in the shaft, especially central and dorsally about midway up the shaft (perfect perpetrator for a Peyronies Disease 'buckle')

-Hour glassing in this EXACT spot, ONLY visible during flaccid state (this hour glassing has subsided 85% while using Pentox; if my use of Pentox becomes inconsistent, the hour glassing will return)

-spasms or a twitching in my penis (reminiscent of the muscle necessary to block urine flow, or "flex" the penis, as described above)

-an onset of curvature of about...10 degrees (?) that showed up within the months close to my first sexual intercourse encounter.

-Erectile Dysfunction separate and concurrent with my Peyronies Disease, present both before & more vigorously after the onset of my Peyronies Disease

-inability to achieve a full erection due to a sharp PAIN at about 60% erect state (pain located, again, dorsal-center and midway up the shaft) At this point, my fear and 'adrenaline' kick in, causing me to mentally cease and discourage the erection

-what seems to be a spot of...'indentation' on the left side where the curving is occurring? I'm not sure if this is the case. I simply don't know.

Side note from above: it is valuable to mention that this pain has been present for YEARS!!! It HAS NOT subsided, and...

There is no trace of plaque! My urologist examined me in flaccid state, and simply could not find anything that resembled plaque. This was the first thing he checked. And to my surprise, as he examined me, I expected a sharp internal pain (likely within the corpus cavernosum???)  when he applied pressure along the length of the penis, yet no such pain resulted, and my erections later that day demonstrated no further pain due to his exam.

However, I will say that there is a distinct feeling of stiffness, or internal 'resistance' to a full erection that occurs at about 55-60% erection. This pain occasionally will eventually subside, and I may achieve erection as strong as 70%, but nothing EVER more than this.

Post-orgasm and ejaculation, I often maintained much of my erection, and oftentimes, if I attempt a second erection within the same .5-2 hours, the erection is onset more quickly, and is firmer than the first. I simply do not know what to make of this.


- - - - - - - - - - - - - - - - - - -

I'm young, charming, plenty of going for me, but honestly, I feel pretty worthless...much like a drop in the bucket. It's going to be a long, long journey...

I need your guys' advice, support...anything you can offer that could give me insight into what I'm dealing with.

Is this Peyronie's? Is this some other kind of continuous micro-fracture to the corpus cavernosum that I've caused due to 'flexing' the penis while masturbating to try and achieve a full, pleasing erection???

It's anyone's guess at this point. I've read about Dr. Lue...if he accepts my insurance, it might be high-time for a trip to San Fran.

Please help. I'm at wit's end. I had sex on New Years, and the results weren't any better. I'm just hurting different girls. Even if I tell them that it's due to an injury, they feel cheapened and unattractive by the end of it to some extent. Even if it's not those particular feelings, the disappointment and bummed look they have when they realize this tall, gorgeous stud doesn't have the equipment to deliver the mind-blowing sex that they envisioned is the ultimate mind-frag.

I gotta' get this under control...

Thank you so much,



Nellah
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Old Man

Nellah:

I am addressing an answer to your post by private message, so look for it soon.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

stopthismadness

You're not alone man, your story is almost completely similar to mine most of what you describe is what i have to deal with.  i'm 24 and have been battling this since i was 18... masturbating one day i felt the pop from using the squeezing technique with my thumb and index to prevent the mess, boy was that a mistake.. if only i had a time machine. my erection quality hasn't been the same since and my erection angle is just about perpendicular if less , it used to be when i had an erection it was almost parallel to my belly with an upcurve. My glans doesnt even fill up unless i squeeze with my fingers, pc muscles,  or use a ring. I suspected peyronie's after googling and finding this forum despite my lack of curvature at the time. it's taken it's psychological toll on me to say the least.. the worst part about it is that I went to the urologist to have a blood flow evaluation done to find the cause of my ed, then suffered priapism from the injection shortly therafter. The urologist made things worst. He didn't have any of that injectable medicine to make your erection magically go away ( which every urologist should have on hand!) so he thought it was a good idea to perform two shunts on me to reduce blood flow in two regions of my shaft; after already previously telling me i had built up scar tissue preventing blood flow to the distal region from the same doppler scan (which would indicate peyronies! any informed physician should know that trauma exasperates peyronie's). I've since had two plaques develop that are hard so they must be calcified on the top and bottom of my shaft which have given me curvature and a strange twist to my member on top of my ED. I've lost faith in most of the medical community already. It's very hard to cope with being so young.  I feel like my life at this age is hopeless. My confidence has completely dissolved, and it's crucial to have confidence to thrive as a man. I feel empty inside, all the girls I wanted to talk to I no longer even bother to pursue, I feel like I would let them down and they wouldn't want to be with someone who had to take pills to keep it even marginally up at such a young age. I too have to buy expensive cialis to perform, so I 've opted to buy the generic stuff from overseas which is not only risky but hasn't worked as well as the legit stuff.  But what can i do? I can't afford this affliction. Its the closest to  normal sex life as I can get. Flings here and there because I'm too afraid to open up and let any girl become long term and discover what I have to do to pleasure them and be with them sexually, and God forbid that I run out of pills. Women are very harsh nowadays and I don't think the older members would understand. I feel like I'll be flying solo for a long time to come. It's maddening and that is not an understatement, I feel as if this is slowly driving me insane. I sure as hell don't think the same way that I used to. I wish you the best. My hope lies in Dr. Atala's work. Google Wake Forest Regenerative Medicine. There may be hope in the future for us in gene therapy and regenerative medicine, especially if people reach out to them and let this disease be known. It may not be that we need a replaced kidney or liver, but I believe our quality of life is just as important. If every man in the world suddenly obtained this disease I'm sure they would all agree. Hopefully in the next decade we will see some kind of hope to help us in this disease. Also, the patent on Viagra is due to expire soon so many cheaper and generic pde5 inhibitors may emerge on the market here which will help with the sex life. Stay strong, think positive. Don't dwell too much on this or it will suck you into a depressive hole, trust me. Find something to keep you occupied, anything. I think about this disease every single day of my life and it haunts me to no end. My advice to you is to continue with the l-arginine and pentoxifylline, and if you can afford it continue to take the cialis. Coenzyme q10 for the pain and the occasional ibuprofen if it gets really bad. Vitamin E, and a healthy diet and exercise won't hurt either. Trying to stabilize this and prevent further inflammation is better than nothing. I , personally have been taking tadalafil 20mg(generic cialis) at least 2 times  a week on top of the pentox for quite a while. While I have marginally better erection quality ( nothing compared to what it was like at 16) i haven't noticed any progression other than those damn plaques the urologist caused. ( I thought about a lawsuit but alas it is too late for such action and I doubt I would win that one if it weren't too late anyway) The flexing you talk of, which I also used to delay ejaculation I am assuming is the same as the PC muscles, basically kegels for men. They actually help me to stay hard when I need to. If I do end up having sex if I don't flex this i won't be able to continue. So I'm unsure if that the flexing of the pc muscle is actually harmful to you as it helps me a great deal to overcome the inability to just spontaneously get hard on demand like I used to in the good old days of 2003. Stay positive man. Life may have dealt us a bad hand, but the game isn't over yet. Just stay positive and be proactive, follow some of the protocols the older members have suggested, they have helped me a great deal. This place is a great place for support as well. I may be a bit cynical and pessimistic at times but this place has helped me to realize I am not alone. I refuse to give in completely to this disease as debilitating and frustrating as it is. It's almost comical at times. Who would've though that there was such a thing. I would have never back in the day. Also, if any older members have any advice shoot me a message too, id be grateful.

donlock

guys im 24 and got injured 2 years ago. i have gone through so much stress its unbelievable. the thing is what you need to understand is as long as u can get an erection whether through pills or whatever and u can ejaculate this means u can have sex. and  u can find that 1 partner who shares this problem with u and helps along the road there is still girls out there who are open minded to this. there is no point taking stress man because stress will kill us im even loosing haire now. but ive thought to myself im gonna take it as it comes like a man. try boxing or karate or something since i got injured i try and compete in different kinds of activities. i hope this helps.

Nellah

Hey guys. I'm going to follow the format here and include a couple questions that are specific to my Peyronie's. I need all the help I can get, as I'm sure you can all relate to. Thank you for reading my case.

Age?

I'm 26, but my Peyronie's began at 17.

What did your medical doctor conclude?

I saw a urologist who could not locate a plaque, prescribed Pentox and 5 mg cialis, injected me to track flow. When injected, I was mortified because there were multiple people in the room and I was stark naked from the waist down. Doc said I would produce an erection for sure with injection, but I did not. He concluded venous leak, and said 'There's nothing you can do. Take cialis,' and insisted that it would get worse over time. It seemed like he wanted to be done with me. On a deeper level, I sensed some frustration maybe not with me as a patient, but with the fact that he was sending a 23 year old away with little to no hope.

How long have you had symptoms?

Symptoms are pushing 9 years. Only this last year has my diet and health really come full circle. I'm healthier and more aware of how to care for my body than ever before. Combating the disease isn't the same as losing belly fat, though. It seems infinitely harder. To be fair, much of the pain I've experienced while masturbating or post-masturbation has subsided in this last year. I think that's healthy progress, considering curvature and quality of erection has been poor, but stable over the course of nearly a decade.

What are your symptoms?

i. Symptoms over time have been hour-glassing (this has improved drastically. I rarely see hour-glass), a wrinkle in the skin mid-shaft that seems to be a weak or a flex point. This area seems to behave like the flaccid penis mid-erection and post-erection.

ii. Mild pain sometimes present after sex or masturbation.

iii. Inability to maintain quality erection for intercourse when laying on back.

iv. Erection without Cialis ranges from 55% to 85%, depending on circumstances and position.

v. Miniscule or negligible curvature to the left.

vi. Loss of sensation and pleasure during masturbation and climax.

vii. A fluttering, if you will, as my erection reaches maximum capacity and begins to decline immediately afterward. It's as if there's a tug-o-war happening between my body trying to fill the full erection, and the veins inability to fully clamp and trap the blood in there.

viii. Erection angle of less than perpendicular. It usually sits at anywhere from 110 degrees at best to 135 if left unattended, as it were. On Cialis, I can produce a 90 degree erection (parallel to the floor).

What treatments have you tried and what were the results?

In the past, I've tried Pentox a couple times daily, although the side effects seemed cumbersome, but I do remember overall better blood flow to the penis, even while flaccid; Cialis 5 mg daily (I've had great response to 10mg), and CoQ10 1-2 times daily.

Currently, I'm taking Bromelain 1-2 times daily, a vegetable based multivitamin, Potassium, CoQ10, and will be ordering Cialis via River Pharmacy soon.



Do you have insurance or means to get medical treatment?

No insurance currently, though I can obtain the funds to invest in cialis or pentox from out-of-country suppliers like river pharmacy, etc.

Where are you in dealing with the psychological aspects of Peyronies Disease?

In a state of increasing worry, as I'm finally realizing that my symptoms are not because I'm diabetic, or have high blood pressure, or cholesterol, or don't exercise enough, or am fatigued. I know these things can contribute to symptoms, but Peyronie's is the underlying issue, although it may not have always been. I believe that my diet is to blame for the onset of this disease. At 17, my eating, exercise habits, and emotional/psychological state were deplorable at best.

Are you in a relationship?

I am not in a relationship. I have sexual encounters on average once a month, and they vary in experience of sexual dysfunction. Consistently, I am unable to have sex with a girl on top without a magic combo of: timing of insertion, fast stimulation, and absence of any slipping out at which point I lose the erection promptly.

- - - - -

People talk on this forum about 'true venous leak.' What's the consensus? If my erections are never fully hard, and are position-dependent, then it's a pretty sure fire indication, yes?

I had my Testosterone levels tested several years back. I fell in the 400 range, although I suspect it could be higher now as I've re approached my fitness, diet, overall health, and quality of life and happiness. If it's low, is there a true culprit here, or is this controversial?

I respond well to Cialis. Is the VED only being used to produce erections and then maintain them with a constriction ring, or is there the possibility of rehabilitating erectile tissues with this vacuum device?

Is massage to my 'flex point' (As I said, I cannot locate any plaque or hard spot) a good investment in maybe breaking up any potential scar tissue? I've been having fuller erections as a result, and more recently, my morning erections seem to be responding to this massage as well.

Thank you guys for reading, and any advice you can or do offer, I must thank you profusely in advance!

Best,


Nellah
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
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james1947

Nellah

I merged your topics because everyone gets one topic on the introductory board.

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

NeoV

Yes VED is for therapy, it does "rehabilitate" the tissue, just check the VED boards.
I appreciate your detailed description and intro, my story isn't too different from yours. And I'm really glad you're having some improvement!

Nellah, I have the same experience as you with pelvic clenching and delayed ejaculation. I think clenching is what caused some of my Peyronie's and problems staying completely hard since I relied on it for years. Now that I've stopped my erections are much better. Did you get an ultrasound? I am partly suspicious that we have some type of aneurism of the penile arteries from over clenching and that resulted in swollen and deformed veins causing bending and hourglassing. I hope my ultrasound will shed some light on this. Anyway I recommend you never clench again!

Cal30

Nellah and Stopthismadness,

Thanks for sharing and for being so detailed.

The psychological aspect of peyronie's and erectile dysfunction on a man can be absolutely soul crushing and devastating. I'm 30 and experienced my first experience of ed with a woman when I was 26. I know how humiliating, degrading, terrifying and scary peyronies and ed can be.

I've experienced plenty of panic, fear, hopelessness and even suicidal thoughts at times. It is a fight, and I've taken plenty of painful beatings within my own mind many times.

The thing is, you've got to keep fighting, keep trying things and keep tenaciously holding on to your faith that yes, you will overcome this setback. You're going to face it like a man, and just that alone is something to be tremendously proud of.

The situation you describe is not completely hopeless. You still have a penis! Some guys don't even have one anymore! (Watch Born on the Fourth of July) For them, it is game over. You're not in that camp, so worst case scenario, if nothing else works, you can probably still get a penile implant (ie. penile prosthesis). This works in 90% of cases, and in 90% of cases both the men who get it and their partners are happy with the prosthesis.

Next, stop telling yourself that "no girl is ever going to accept me with this." I know that is a tempting fear to embrace, but you have to resist thinking that way. If you give in to that thought, it could become a self fulfilling-prophesy. - Think of it this way; when, not if, you find a woman that is willing to work on this with you and help you figure this out, you'll have found a really solid woman. - I'm not saying you won't be rejected and won't have your heartbroken along the way, but again, you've got to keep trying, keep fighting and tenaciously hang on to the certain knowledge that, yes, "I will find a solution."

Personally, I became a Christian about three years ago, so casual sex is not something I take part in anymore, and masturbation is a temptation that I do my best to resist whenever it comes along, though I'm not perfect in that regard. - As a Christian, I was dating a woman for about three years. I told her very early on in the relationship that I had peyronies and have had experiences with ed. It was a bit of a shock to her at first, and she needed some time to do some research and think about it, but after she did, she decided to stick with me. We got to know each other very well during that time, and kissed and hugged, held each other, etc. but never had sex, because of our shared faith. Even though it didn't end in marriage, it was nice to have someone, and it showed me that it is possible to meet a woman who is willing to take a risk on you in this regard.

It's totally understandable that peyronie's/ed would freak you out. No man wants anything to go wrong down there. Not even once! Your feelings are valid and this is a safe place to share them.

I just want to encourage you guys to look for ways to fight back against the pull toward depression, fear, panic and despair.

Take heart, there are treatment options. There are success stories, and there are breakthroughs.

I will pray for a solution for you guys.

Cal30