New to this forum - looking for advice and support!

[mz8282]

Hello,
I am 31 years old and have had Peyronie's disease for three years. I've been so embarrassed about my problem that instead of seeking out help and treatment, I've just done nothing at all but I've decided it's time to start being proactive and do what I can to fix this problem. I haven't had sex since this happened three years ago because I've been too ashamed and embarrassed.  I don't really have much ED and my curvature is upwards, so I think I am able to have sex if I want to. My biggest questions are about my penis when it is not erect though. When I am sitting or lying on my back, it feels mostly normal, but when I am standing up it feels very tight and rigid. This makes it very hard for me to sit down comfortably. When I am sitting down, I often have to manually adjust my penis and move it to the side, and then it gets soft again and feels more comfortable. Is this a common problem with this disease or am I just an anomaly and is there anything to do about this?

[morphine]

This is what I hear them call "hard flaccid" and I believe it has something to do with the condition, but I'm not sure what. A lot of men on here have talked about it. I think the basic consensus is hard flaccid happens when you have an injury on your dick and kind of subconsciously are protecting your dick from any other possible injury. If you get kicked in the nuts, hop in cold water, or have this injury that somewhat caused the Peyronies, you naturally are just more paranoid about getting hurt there and your dick "turtles" so to speak and goes into defense mode. Like I said, I'm not a doctor, but this seems to be the consensus I've read.

[TonySa]

Check out NeoV's post and videos.  I believe he addresses hard flaccid.

[Paolo]

mz8282, have a read of the following article, it's quite long though;

Hard Flaccid Syndrome... | All Things Male Forum

Do you suffer with anxiety?, perhaps the anxiety is subconscious, and therefore you are unaware of it  

Good luck and thanks for registering  

[Monty]

Hi, welcome to the forum, you will find lots of good peeps on here that with their own experiences can answer a lot of your question you must have, i'll start by saying you need to get a medical examination find a good URO and move forward from that, its a big step you have made, so many of us have waited in hope that things will get better with time, now your on the road to recovery, just stick at it, no quick fix.

[mz8282]

Paolo, when I have anxiety or am feeling scared or nervous about something it gets much worse - it tightens up and seems to retract even further into my body. But even in its normal, resting state it is hard and rigid. There's also another issue that I haven't seen anyone discuss at all, and that's whether or not it's safe for me to engage in contact sports or any physical activity. When you have hard flaccid, it's like having an erection in a sense and I'm worried that if i were to fall or have some sort of collision, then I could injure my penis because it's not squishy as it is when I'm lying down and this could cause further injury or damage. Any insight on this?

[Paolo]

Hi again, my name is Paul by the way.
You must wear a cup (jock strap) when playing sports, something like https://www.amazon.com/Shock-Doctor-Ultra-Supporter-Carbon/dp/B00181JJMU (other suppliers are available LOL  
You should be able to secure your cock and balls in a comfortable manner, what ever works for you.
It amazes me that guys who play sports don't wear cups!!  

If you have subconscious anxiety then 'there is no normal state'. Many guys have done kegel exercises in the past, that would be were your 'flex' your penis (in a non sexual) situation, result is that your pelvic floor muscles become over-trained, in effect they are constantly under tension (without you knowing it).
Kegels are only okay if you do equal amounts of 'reverse' kegels, to offset the imbalances that otherwise occur. Guys do these on the assumption it will give them an increased erection angle, that's not true.

What is a kegel?, well if you think about it these muscles become active at the PONR (point of no return) before orgasm, you at that point have absolutely 'no control' over these muscles BC (bulbocavernosus)muscles, the two halves of the BC are joined in a "herringbone" pattern surrounding the bulb of the penis (the internal base of the corpus spongiosum).
The BC muscle has two main purposes. One is to force liquid (urine or semen) out of the urethra. It does this by way of the herringbone interlacing of muscle fibers which, as they contract, milk the urethra toward the meatus (opening at the tip of the glans). It also happens to cause the penis to be pulled into the body (the LOT tug-back).
The other function of the BC is to squeeze blood into the corpus spongiosum and the glans. The bulb of the penis is a reservoir of blood. At the time of greatest arousal voluntary or reflex contractions of the BC and Ischiocavernosus muscles force blood into the corpora. The Ischiocavernosus muscles surround the crura of the penis (legs of the corpora cavernosa).

Many men 'clench' before orgasm purposely, guess what, you don't need to do that to orgasm!

A reverse kegel is when you try to force your pee out more than usual, that's a reverse kegel.
If you have never done kegel exercises then ignore the above, I admit at one time I was obsessed doing them and still have to check myself to stop doing them. Be aware that kegel exercises can seriously restrict natural blood flow around your pelvis, not good.
Paul (paolo)  

[mz8282]

Thank you Paul. Are you a doctor or just very knowledgeable on this topic? And What about non-contact but high-impact things like running and jumping? Whenever I try to run or jump, I get very unusual sensations in my penis and I'm not sure if it's causing damage to it or not.

[Paolo]

I wish I did have a medical background, I would've fixed myself by now LOL, I have read a lot though.
Don't worry about the running and jumping, you probably have tight and perhaps over-trained pelvic muscles, have warm baths with magnesium chloride flakes, you will feel great afterwards trust me  
Paul  

[mz8282]

Are there any natural remedies you know that will help hard flaccid? What about increasing exercise and better diet? Will that increase blood flow and thus lessen the rigidity? I've seen people talk about manual stretching but I tried that once and I felt sort of a tear and I'm pretty sure I just made it worse. Like I mentioned before, as simple as this may seem, my biggest issue is going from a standing position to sitting or lying down. I have to manually adjust myself every single time (and be very discrete if in public) and it's just a pain in the ass and it's not comfortable. I'm not in any physical pain though or in any discomfort while standing, walking, or while lying down or sitting once I have adjusted myself though.

Changing topics completely - what do suggest in terms of having Peyronies and dating women? I've had this for three years and have been completely out of the dating scene because of my embarrassment but I've decided it's time to stop feeling sorry for myself and make the best of bad situation.  When should I tell a girl and how would you expect someone to react? I've seen people write cliche stuff like "if she doesn't accept you then she's not good enough for you" but it's important to be realistic and realize that this is something that can be off-putting to woman who want to have a normal sexual relationship without hindrances so I'm not sure what the best approach is.

[Paolo]

Well you could keep your weight under control, presume you do that anyway.
I have replaced breakfast with C8 MCT oil (100% caprylic acid) which I take with coffee, it completely kills your appetite for about 5 hours. Caprylic acid is also anti-fungal and anti-viral so that is a bonus. The MCT stands for medium chain triglycerides, very good for brain function.

Diet and exercise is going to help the hard flaccid but so is keeping your anxiety under control, difficult I know. Take a look at this attachment for pelvic exercises :- https://uhs.princeton.edu/sites/uhs/files/documents/Pelvic-Stabilization-Hip-Strengthening.pdf

Well dating is going to be all down to your confidence levels, your penis isn't going to be the deal breaker is it.
Peyronie's is under-reported, right. Let's face it a lot of members wouldn't be here anonymous if it wasn't embarrassing, right?
When it comes to intimacy you should say you have a syndrome, and not a disease, right. You can't catch peyronie's but if you say disease what does the women hear, what now a 'disease' WTF?.

You should also be aware that peyronie's is incredibly common, in my opinion its about 15% of men. I am bisexual by the way so I can speak with some authority here. Peyronie's is thought to have a genetic component and therefore you could call it an auto-immune condition, also it appears to affect North European populations in the majority.

[mz8282]

My conundrum is that these exercises will help with hard flaccid, but it's hard for me to do some of them BECAUSE I have hard flaccid. I can do the standing ones but because of my penile rigidity it kind of hurts when I'm on my side.

[Paolo]

I understand, did you read the article previously advised below;

Hard Flaccid Syndrome... | All Things Male Forum
Paul

[mz8282]

I did but there are so many different posts, I'm not sure who's advice or insight is the best to follow.

[LWillisjr]

Topic is locked as an introductory topic.