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Author Topic: desperate and need someone to help me or talk  (Read 3321 times)

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ocding

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desperate and need someone to help me or talk
« on: February 09, 2015, 03:09:11 AM »

Hey guys,

I'm new and hope I put this in the right place. I am desperate for someone to talk to about this and for some kind of help. I don't know if what I have going on is peyronis, or hard flaccid, or something else. I guess I'll start by saying I just turned 28 and I've been noticing some weird things/symptoms with my penis sicnce about September or October of 2014. I'm in tears almost every day because I feel like something is off/wrong with my penis and im broke and feel hopeless with no insurance so please bare with me. I've been to a urologist about 2 months ago who comes down to my small town from St. Louis. I'm currently unemployed and do not have insurance so I had to pay cash out of pocket just to see him, only for him to tell me that I needed to see a shrink first before he ran any kind of penis/Doppler/ ultrasound tests because he said they were too expensive and that it was all in my head. He said all this to me once I pulled out my list of symptoms and showed him.

My symptoms are as followed: erectile dysfunction, acquired premature ejaculation, firm nodule type thing just below glans under skin looks like its starting to form a donut like swelling , thin firm rope like cord/or vein running from base to glans that I can feel under the skin, a pulse or vibrating within my penis, hard flaccid penis, small tiger like stripes that i can see and feel under the skin that does not move with the skin throughout the shaft on both sides of CC< recently noticed, firm/constricting/hardened type feel to penis with semi erection/ on the way to full erection< recently noticed, sometimes slight bending and curving on the way to full erection but not always and not with full erection< also recently noticed. Im probably missing some as my head is not in a good place. I have no pain that I'm aware of except when thinking of if I'm feeling pain or not in my penis, and then just feeling Burning / tingling in my feet and toes.

Please Would anyone happened to know of a peyronies specialist in the St Louis Missouri area that they can recommend?? I can't stop thinking of this every day, it feels like a dream and if nothing else I just want to get checked out to either rule it out or get/start treatment.

One question I also had, I've read that peyronies causes shortining of the erect penis, so if someone does end up haveing peyronies does that generaly mean that their stretched flaccid length also becomes shorter then before?? If so, would that be a relyable indicator in any way?
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peyroniessucks77

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Re: desperate and need someone to help me or talk
« Reply #1 on: February 09, 2015, 07:15:58 AM »

Sent a pm
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NeoV

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Re: desperate and need someone to help me or talk
« Reply #2 on: February 09, 2015, 07:21:58 AM »

The only way I can see tingling in the toes related to Peyronie's is due to it being related to diabetes, so you may have neuropathy in the process of having both Peyronie's and Diabetes. I have both, but I wouldn't be alarmed just yet. I doubt you are experiencing that, but If you do have these at least you have an angel to attack the disease. ALCAR has a lot of research on neuropathy, and a few studies on Peyronie's which causes us to take it.

Below the glans "donut" shape thing you describe sounds identical to lymphocele, which usually is below the glans. Put it next to a strong light and see if it has a blueish color. 

I don't want to bring you bad news but from the basic description it sounds very much like all of our cases of Peyronie's.

The good news is that once you start addressing it, it generally tends to get better. Really hope you can see a specialist. Try to clam yourself down and do not obsessively check your erections.

ocding

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Re: desperate and need someone to help me or talk
« Reply #3 on: February 09, 2015, 02:22:36 PM »

Neov, are you familiar with hard flaccid? Ive been doing alot of reading on it along with peyronies and they both seem to have/cause similar symptoms/things, I just dont dont know how to tell them apart. I do know that there are times my flaccid penis goes back to being like it used to be, like hanging better, soft, elastic and spongy but usually only when I'm sitting down or laying other wise standing a lot of the times it's firm and hard like. If the hardness I feel were to be scar tissue wouldn't it always be like that? And not soften up with certain positions?

Would you mind telling me some of your symptoms you noticed? Did your flaccid stretch length get shorter or do u know if that happens with peyronies? Also is premature ejaculation common with peyronies? I know it can happen with the hard flaccid syndrome.
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ocding

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Re: desperate and need someone to help me or talk
« Reply #4 on: February 09, 2015, 02:33:51 PM »

I also wanted to know if your ejaculation strength changes if someone were to have peyronies. One of the symptoms I forgot to mention that ive noticed for probably the longest is dribbling/oozing ejaculation, instead of shooting out like it use to. :-\
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NeoV

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Re: desperate and need someone to help me or talk
« Reply #5 on: February 09, 2015, 09:03:33 PM »

There are threads on hard flaccid here. The general idea is that it's inflammmation. Stopping all sexual activity for over a week rid me of it.

Since hard flaccid is not medically recognized it's best to simply consider it a sign of an unhealthy penis (possibly). Staying in that state in my opinion will lead you to fibrosis. When we talk about Peyronie's we generally talk about the whole range of symptoms including inflammation and fibrosis. It's all treated the same really.

I haven't heard of premature ejaculation coming with Peyronie's but it's possible. Both premature ejaculation and Peyronie's have a blood sugar connection.

There are very few norms with this disease. You can read about my symptoms on the improvements board but it's basically ventral bending and bending after ejaculation. For years I had a very bad hinge effect with my flaccid. After years of traction and having healthier habits (reducing sexual activity) my flaccid is mostly fine now and is actually longer than before. Ne extremely careful with traction and VED therapy. Definitely see a specialist.

ocding

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Re: desperate and need someone to help me or talk
« Reply #6 on: February 09, 2015, 10:21:38 PM »

I thought hard flaccid was a pelvic floor muscle imbalance/problem? And what is a hing effect if you dont mind me asking?? I also have a downward bend but it's only on the way to full erection. My erection process has become slow, or at least it seems, has anyone heard of that? I seem to keep having these light painless pop's during sex that seem to be coming from the underside base of my penis. In my flaccid state, sometimes my penis feels weak like it would break if I where to bend it up ward and back twords my belly.

All this not knowing for certain is driving me literally insane.I invested in a pump from vacutech a while back but I dont believe they are medical grade or whatever but does that make a difference does anyone know?
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NeoV

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Re: desperate and need someone to help me or talk
« Reply #7 on: February 09, 2015, 11:09:48 PM »

No, there is NO scientific literature on "hard flaccid". There is no consensus among anyone. All we can say is that it is a result of poor penile health, be it from vascular issues, pelvic floor issues, you name it.

Yes we have all heard of what you describe, classic Peyronie's. Slow to inflate. Penis pops are not good, but may be harmless for some people.

Hinging means exactly what the word means, sometimes we say buckling, basically your flaccid hinges a bit instead of hanging directly down.

Penile fibrosis (Peyronie's) comes in many different patterns.

Be very very careful with sex, I would take a break personally : ( You need to see a specialist. Sadly there are not many ways to really treat or cure the disease, but there are some drugs and supplements that will help you. Get on pentox, low dose cialis, cittruline, CoQ10 and ALCAR if you aren't afraid of TMOA.

We are here for you.

ocding

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Re: desperate and need someone to help me or talk
« Reply #8 on: February 09, 2015, 11:44:31 PM »

Thank you neov, as pathetic as it may sound I am very emotional over whatever this is and find myself crying a lot and not even being able to help it or control it, it's just happens and comes out :-[ the future looks so grim I dont know what's going to happen. I already dont have any friends, or family, no money, insurance, or a job, just a girlfriend but I'm afraid that won't last for long now. Jesus, I'm literally a loser.

Can you please tell me what CoQ10, ALCAR, and TMOA?
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NeoV

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Re: desperate and need someone to help me or talk
« Reply #9 on: February 10, 2015, 12:09:57 AM »

I sent you a PM.

I know how you feel. I still cry at times and I know many of us here do. Peyronie's feels worse than death, and that's because sexual problems are linked to a larger version of death in the human mind which is your genetic death and end of your DNA.

In this way, there is a good reason we feel so bad, but it's easy to confuse that feeling of dread with one's concept of sexual worth, or value as a human being.

Unfortunately very few people will ever reach a point where they can see this clearly, and see that their pain and sexual issues are actually highly trivial from an objective viewpoint, or even from the viewpoint of a woman.

Take this as a chance to develop yourself deeply and personally, and as a chance to hit the gym and get in the best shape of your life. There is hope for you, it's going to take a lot of internal work and dedication.

CoQ10 or it's more bio-available version Ubiquinol (for men over 40), is a nutrient with antioxidant and anti inflammatory properties. It has been studied on many diseases, including on Peyronie's. The results were quite impressive, which comes from it's ability, among other things, to improve endothelial and vascular health. The study on CoQ10 was the best study to date on any natural substance in relation to the disease.

Sorry, I meant TMAO.

ALCAR is Acetyl-L-Carnitine, an amino acid that also has vascular healing and anti inflammatory properties. It was studied on Peyronie's and was shown to be more effective than Tamoxifen. Sadly the study was very small, and poorly controlled. Still, there is evidence that the substance may be useful in treating a variety of diseases. The only issue is that it clearly raises TMAO levels, which is linked to heart disease. The verdict is still out as to whether or not TMAO is actually a cause of heart disease or not.

I also recommend daily Citrulline or daily low dose Cialis.

Again, try to slow down your mind and stay dedicated to fighting this, as well as all of your negative emotions connected to it.

Jonbinspain

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Re: desperate and need someone to help me or talk
« Reply #10 on: February 10, 2015, 01:55:46 AM »

Neo V has it right. You need something to start making you feel good about yourself. If you can afford to, I also would strongly suggest you get yourself into the gym. Work on that body, it will make you feel better both mentally ( endorphins) and physically. It will build your testosterone levels naturally. You will probably make yourself a few friends down there too.

Try to pick a gym, or a time, when & where it's not a competitive atmosphere.
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james1947

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Re: desperate and need someone to help me or talk
« Reply #11 on: February 10, 2015, 07:49:07 AM »

Moving this topic, otherwise have to lock it. I think the continuity is important for the topic owner and all of us.

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

nowhereman

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Re: desperate and need someone to help me or talk
« Reply #12 on: February 11, 2015, 09:43:11 PM »

ocding,

To me, most of your cords, swelling, "tiger stripes" and the like all sound like lymph inflammation. NeoV said lymphocele, which is when lymph forms a pocket outside the lymph channel usually from a rupture. That term usually gets mixed up with sclerosing lymphangitis, which is the term for swelling/inflammation of a lymph channel (in the penis, anyway). Which is what I think you may have. search that term in google images. it can show differently too I also have the hard "vein"like cord that goes from base and wraps under the head......I have all these problems, basically and a lot of pain it has been hell.

If this is your problem (which it may not be), you're only bet is a complete hands off policy, no masturbating/sex, or poking prodding etc for what could be weeks or many months. This is no joke. lymphangitis is an inflammatory injury on the penis and bothering the tissue will only make it worse and continue to stick around for longer. From experience, YOU DO NOT WANT TO MAKE THIS WORSE.
The little bit of scientific literature on the subject backs up the "hands off policy". And again in my experience this can become a living hell if it is made bad, I can't possibly explain how bad. Seeringly inflamed. And the inflammation just sticks around.

Here is a good link:
http://forums.webmd.com/3/urology/tip/1/832#832

anyway, something to look into.
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