Please keep us updated. This could be an interesting development.
Doesn’t explain why there is a period of supra-recovery after cessation of finasteride and then a big crash in most people. If it was only about fibrosis, then theoretically most people would get ed during treatment with finasteride yet they briefly recover after cessation(which doesn’t last long before the horrors happen)
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It could be that for some of us, whatever happened with our hormones or androgen receptors or whatever has subsided but left a lasting effect (the fibrosis) and now the fibrosis is all that has to be taken care of.
I have physical alterations that are visible by MRI in the internal penis area, like below the scrotum, that my doctor describes as “scar tissue”. Has anyone else had tissue alterations visible by MRI?
What is your doctor suggesting for treatment methods based on your penile elastography results?
I think we are facing the same problem. My scar tissue was not visible by MRI, but it’s there.
I have been using a vacuum erectile device for several months with modest results. But I guess I would be much worse if I don’t use it.
It’s not likely that I will recover 100%, but PRP and shockwave can help. I will start with those treatments soon.
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As I said, I am not a scientist and am not trying to find the universal cause for all PFS cases. Every patient is different: some may have had a crash, some not, some have fibrosis, some don’t.
If you have fibrosis, you should not waste time and take action as soon as possible.
Have you used PRP or shockwave?
Apparently there are a few types of shockwave and have different levels of efficacy
One common type has zero effect where another type, not sure, has a good effect
But of course the good type is less common and harder to find
Does it really break up fibrosis?
I have used shockwave. Six sessions during a month. I didn’t see great change.
But it seems I should do more sessions.
PRP can help, too
I don’t think the kind of shockwave in that machine is really effective
There’s better albeit more expensive kinds that you have to search out for
Khera spoke about this on YouTube
I tried to contact him but no answer
I’d use the machine or facility that he’d give the OK on
I’m gonna try and contact him again and hopefully I get through
What did your doctor suggest to you as treatment options? Interesting. Do you have any bends on penis? Or typical PFS shape changes?
@aldo Do you have any idea if your issue and similar physical penile issues can explain the low semen volume? Do you have lowered semen volume?
I don’t have that issue.
It could be a different problem that you will need to address separately
I have Viagra as needed. No bends in penis, no change in shape or size. I get pelvic floor physical therapy 1-2 times a month. The PT helps as I would get pain and soreness in my pelvic floor before. The PT has also helped improve my erectile functioning.
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Hey man, cool to see you’re benefiting from the Pelvic Floor PT
Could you talk more on it?
What you do and how it helps exactly?
I used to have constant tightness and pain in my pelvic floor muscles. This is no longer the case. I think the PT has made it a little easier for me to get erections as all of the muscle and tissues in that area are looser and more relaxed to allow blood flow. Also, it’s really great to not always be feeling uncomfortable or in pain due to the tightness.
The PT involves the physical therapist mostly working internally on the muscles and tissues of the pelvic floor. Massaging or loosening up the tight areas. Basically they stick their fingers up my butt. They also will work areas that the pudendal nerve runs through externally, not in the butthole. The goal is to stimulate the pudendal nerve and tissues affected by the pudendal nerve.
Thanks for the info.
Is the treatment painful?
In general no, it’s actually pretty relieving. It feels as if I do not have good control of those muscles anymore. They are supposed to tighten and relax automatically and are involved in controlling erections… which obviously does not work properly for most of us currently!! My muscles tend to get tighter, they’re not supposed to… so essentially it can feel like getting a deep tissue back massage. So imagine sometimes if your muscles are very tight and sore the massage could be slightly painful, but generally it’s not painful and is actually helpful and relieving.
Do you guys have any hypothesis of why many of us have tight pelvic floor muscles? This seems to be a key component in many PFS cases.
Is the root neurological? In that case, what is the mechanism?
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I don’t think anyone has answers to these questions, I often wonder myself. I think you are correct though that it is possibly neurological. The current research shows neurological disruption of neurosteroids, downregulation of 5AR enzyme in at least the brain, and increased density of the androgen receptor in penis tissue. I feel that one or all of these factors can disrupt signalling of the pudendal nerve between the brain and penis, subsequently causing dysfunction of the muscles and tissues controlled by the pudendal nerve which primarily causes tightness of these muscles.
I have experienced fluctuations in all of my symptoms and slow, small improvements over time in the 2.5 years I’ve had PFS. So I do think most or all symptoms are reversible and treatable. The trick is finding what can help us obviously…
Any ideas on how to correct this? I believe this might be my issue.
I literally have no symptoms EXCEPT ED. My erections are fucking weak and its annoying the hell out of me.
I am 3 months off fin , 2 months off min. Please tell me theres hope. I would legit do anything to fix this.