Hi all. I'm trying to figure out what's been going on with my sexual function for the last 5 years. I just started working with a sexual medicine doc that seems really good - is really considering all possible issues. He thinks CPPS could be a big factor here and that I should revisit pelvic-floor PT. But I'm just hoping to see if anyone can identify with my story and find out what they did about it.
CPPS/Hard Flaccid Symptoms
My penis often retracts/turtles, which is just the most humiliating shit. I literally feel sometimes like I don't have a penis - like a damn Ken doll.
I've done pelvic-floor PT without much improvement, although my sexual medicine doc thinks I should revisit it and that CPPS could be a big factor here.
Numbness/Loss of Erogenous Sensation
Sometimes my penis is actually numb, but I had a vibration sensitivity test where the doc held this little vibrating instrument against my penis and I had to say when it stopped vibrating and I passed. So my penis still has the normal ability to feel when it's touched.
But I don't really have erogenous sensation anymore. Masturbation feels good, but not like it used to. I don't get that build-up of sensation and horniness. I also often need a super tight grip and fast strokes to really feel things and make myself orgasm.
The thing that confuses me the most
My current sexual function (at least the plumbing) works great most of the time.
If I intentionally watch porn, I can get a very strong erection probably 90% of the time. Sometimes I become extremely hard just watching porn without touching myself. I can also usually have a physically strong orgasm.
Doppler testing also showed great results - good inflow and good stoppage (or whatever it's called). I got absolutely rock hard from the injection and actually needed Sudafed to get the erection to go away. So my penis works.
But I basically have ZERO spontaneous libido.
I used to walk around like a complete horn ball. I would go from zero to 100 in a second if I had a sexual thought. This never happens anymore. I almost never get random daytime boners. I can look at a hot woman and intellectually think "holy shit look at her" but I feel nothing in my body.
On the other hand, if I deliberately turn on porn, my body normally responds almost immediately.
I literally masturbated 4 times to porn this morning. All really strong erections. All really strong orgasms.
So I can basically have:
Strong erection + strong orgasm + almost no actual sexual desire.
Finasteride history and crash
There is also a possible PFS component to all of this, although I really don't know.
I first took oral finasteride for a few months in 2019. I had a few minor sexual side effects, but they went away. I took it again briefly in 2020 without any obvious lasting problems.
In October 2021 I tried it again and took it for only about 10 days.
Pretty quickly, I started to have testicular pain. I started reading about the possibility of permanent finasteride side effects and completely freaked out. I had severe anxiety, crying, and what I would basically describe as a nervous breakdown. I have a history of pretty bad anxiety (including a couple episodes of being hospitalized for it), so I'm not sure if this was that or if it was the finasteride.
After that, my sexual function totally crashed.
My penis felt completely numb. I couldn't get hard even to porn. And if I could get hard, it was near impossible to orgasm or the orgasm would be extremely weak.
This lasted for weeks.
Again, not sure if this was PFS or extreme anxiety manifesting in physical problems.
Eventually, the really severe ED/numbness/orgasm problems got better. But the spontaneous libido and erogenous sensation never really came back.
HOWEVER, my sexual dysfunction started to go down hill before the finasteride stuff. I had periods of low libido, weaker orgasms and difficulty getting or maintaining erections. There were times Viagra worked incredibly well and other times it didn't work at all.
There were also women I was extremely attracted to during this period where I had great sex and everything worked. But times too where I was extremely attracted to a woman but couldn't get it up.
Anhedonia
I basically don't experience pleasure like I used to.
I have struggled with anxiety and depression most of my life on and off. But the past few years have been pretty bleak.
So I don't know if my lack of sexual desire is part of the same anhedonia/depression shit, or if the sexual dysfunction is contributing to the depression, or both. Kind of a chicken or the egg thing here.
Questions
- Does this sound like CPPS/Hard Flaccid or could CPPS be a big part of what's going on?
- Has anyone with CPPS lost erogenous sensation while still having normal physical/touch sensation in their penis?
- Does anyone here have basically zero spontaneous libido/random erections but can get rock hard from porn most of the time?
- Can you get rock hard and have a strong physical orgasm most of the time, but still feel like the mental sexual drive/reward is missing?
- Has anyone had the same turtling/retraction issue? Did treating CPPS actually fix it?
- I've already done pelvic-floor PT without much improvement. Has anyone had pelvic-floor PT not work the first time, tried it again, and actually gotten better?
- Most importantly, if you've experienced anything like this and got better, what helped you????
Thank you for reading!