Posted By Gotti (Chicago, Illinois ) on 06/30/2021

Hello all, this is my first post here. I've been suffering from a really painful and life altering condition called Hard Flaccid Syndrome. It's basically a condition where the penis shrinks up and hardens “also known as turtling” and is the classic HF symptom. It literally is as reads: a hard, rubbery or gummy-like penis shaft (corpus cavernosum) feels very hard at times almost like a fibrosis but that's been ruled out plus I'm 31. Most men with the condition have weak soft erections upon arousal, and arousal feels different. (Mine are very tight and rigid- definitely not soft or weak, but this symptom is highly variable, which makes diagnosis all the more confounding. Typically the penis feels hollowed out or disconnected from the body and there are often accompanying sensory changes like numbness and often a great deal of pain which can seem alarming. Tests are normal. The penis is “medically healthy” at least for most with the condition, however, it simply doesn't function as normal anymore and symptoms cause significant negative impacts on daily life. Pelvic floor therapy has been shown to helped some men see resolution in symptoms although follow ups thus far have been not been conducted. The leading theory is that an initial stressor from trauma (even mild trauma) causes either a pelvic floor muscle spasm which causes the muscles in the penis to retract and become hard in texture instead of the usual soft spongy texture while flaccid. It is also positional in nature: better when sitting down, mostly absent upon lying down, and at its worst in the standing position. The condition is unrecognized by the sexual medicine community and urologists.

I have been suffering for a year after a rough masturbation session where I didn't have any lubricant with this with no end in sight, no guidance of a medical professional, no real clues as to what this really is as nobody with the exception of physical therapists have heard of it. I've been doing every recommended treatment: exercise, pelvic floor therapy with a specialist, yoga, swimming, dieting, meditation and the only thing that provides some relief is medical cannabis for which I have a card for. Doctors dismiss it as in your head because men do so much worse to their penis and almost never end up nearly this bad. It has consumed nearly every aspect of my life. I went from this extroverted, charismatic young guy who loved everything and everybody to a totally depressed anxious hermit thinking this is how I'm going to be for the rest of my life. Additional symptoms: trouble, pain with voiding, constipation, aches in the scrotum, groin, and pain in the perineum. Many different causes are found but it's typically the result of a traumatic injury at the base of the erect penis. Also PE exercises such as jelqing are commonly cited causes as are aggressive intercourse and oral sex, although this is believed to be less common. I also have suffered from generalized anxiety for at least 5-10 years, but now I'm in perma fight or flight mode. I'm trying to stay positive but it's hard when you're this young and suffering so much with no help.

Any additional information that might be helpful- I recently started taking niacin 500 mg 3x a day, which has been great for the anxiety and depression, I developed a little bit of a masturbation addiction during COVID as I was single and took the precautions very seriously (which I think contributed to the condition or exacerbated it), I take prescription meds for anxiety and depression- specifically viibryd, pregabalin, clonazepam as needed (which is always now), and suboxone (which has been known to lower testosterone like other opioids). If anybody just has some ideas about what I can do to improve this condition or even just what this damn thing is I would be so appreciative. I know there is a way my body can get better. Thank you and good health to ALL.

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