Why is an implant not recommended for incurable pelvic floor /hf issues?

[Never_Enough]

I'm asking this because an admin for FT wrote this in the HF/CPPS forum.

Guys,
I don't very often step in, but implants are not at all a treatment for hard flaccid. HF is caused by tight, inflamed, and spasmed pelvic floor muscles. The treatment is a good physical therapist, plus learning coping skills for stress and holding your tension in your abs/pelvis. Get to a therapist to learn to manage stress. If needed, valium suppositories are helpful. Botox injections sometimes help. It is all about releasing the tight pelvic floor. Once that is cleared up, normal sexual function will return.
There is no easy fix. But the answer is definitely NOT surgery of any kind.
Please read the sticky post at the top of this forum on educational materials.
Paul

I replied on there but because that forum is so niche it barely gets any attention.

Im not necessarily criticizing the post, but I must ask does the poster have any of those conditions or have they just read about them?

Its quite frequent that absolutely none of the options mentioned work in the slightest. Valium suppositories might help a little but also Valium causes ED. Botox again can help but the action of the pelvic floor muscles makes erections harder. ' Just releasing the tight pelvic floor' is one of those things that is a bit throwaway, as If I were to say 'Its just about repairing the nerves after Prosectomy' 'Its just about getting over Diabetes' etc.

I have suffered from Pudendal Neuralgia CPPS and on and off HF for 3 years now- it is ( or can be) a hellish nightmare condition that ruins your life even without the fall out issues such as ED.

I have pain from the moment I wake up until the moment I sleep that is a mixture of throbbing tight stabbing and burning, and has made spontaneous erections impossible- the bulbospongiosis muscle is completely wrecked with hypertonicity and pain.

I can get ok erections about 70% of the time with high doses of pde5s, but injections are generally out of the question- partially due to being in THE UK ( No Trimix) and partially due to having such a difficult penis to inject as it goes rubbery and difficult.

The thought of an implant is often one of the things that keeps me going and I was a little dismayed to hear it refuted in cases such as mine. I understand there is at least one person who was cured with an implant- and someone else told me their pelvic pain lessened a lot due to there being less strain on the muscles.

I know its a personal thing anyway- but I tend to take a lot from the advice of the experts here as I age towards to point where I will inevitably need one, and would like to hear more from people. either with the condition or experts in the field.

Thanks.

[MovingForward]

I've struggled with hard flaccid and chronic pelvic pain for years. I can only reach about 70% most of the time.
I am strongly considering implant because I am so tired of not being able to function properly.
I have tried just about everything people recommend for chronic pelvic pain and I am starting to feel ready to make a bigger move towards surgery.

[Never_Enough]

I've struggled with hard flaccid and chronic pelvic pain for years. I can only reach about 70% most of the time.
I am strongly considering implant because I am so tired of not being able to function properly.
I have tried just about everything people recommend for chronic pelvic pain and I am starting to feel ready to make a bigger move towards surgery.

Pelvic floor conditions are far too broad to be caught under one brushstroke- and this leads to a lot of people feeling helpless due to the lack of understanding.

-Pudendal Neuralgia
-Puendal entrapment
-General Pelvic pain
-Hard flaccid
-Chronic UTI

What works for one doesnt for another and its not uncommon for absolutely nothing to work.

If surgery is recommended in cases of total or partial ED due to VL or prosectomy where nothing will work well then why not this?

I think saying 'surgery is not recommended' is a very dangerous line- surgery absolutely is recommended in some cases, and I am 95% sure that it will in my case as well so im with you on that.

[Frank Talk Admin]

I work in Men's health and men's sexual medicine. I diagnose men every day with pelvic floor issues. It is a complicated field of issues. Nope, it is NOT one-size-fits-all. This is also the most mis-diagnosed area of men's health today. it is treatable - very treatable. It requires patience, trial and error, etc. it is mental health issue as well as physical issue. the key is finding a doctor who specializes in this. Most doctors have never heard of it and don't know how to treat it. it is frustrating. it is hell. It is treatable.
I still stand by my statement that a penile prothesis should never be a treatment for pelvic floor issues.
Paul

[LiverpoolLad]

I work in Men's health and men's sexual medicine. I diagnose men every day with pelvic floor issues. It is a complicated field of issues. Nope, it is NOT one-size-fits-all. This is also the most mis-diagnosed area of men's health today. it is treatable - very treatable. It requires patience, trial and error, etc. it is mental health issue as well as physical issue. the key is finding a doctor who specializes in this. Most doctors have never heard of it and don't know how to treat it. it is frustrating. it is hell. It is treatable.
I still stand by my statement that a penile prothesis should never be a treatment for pelvic floor issues.
Paul

Hi Paul,

I just wondered if you’ve come across those with cerebral palsy struggling with ED? I have spastic diplegia which affects my legs.

I’m currently seeing a pelvic floor physio and have a tight and overactive pelvic floor. I think it might be unlikely due to my condition for this to improve to a meaningful level and was considering an implant.

[edjohn]

That’s a fairly irrational misuse of logic. Absolutely, HF is “treatable.” So is technically any other condition or syndrome, essentially. Pills, injections, therapy, pills, you name the condition there is some potential fix.

An implant is the only option at a certain point, and when it is worth taking the leap is up to the individual. For most men, it is not worth continuing to try when there is no sign of reversal after a certain amount of effort. For me, when I had gone about a year without an unassisted (injected) erection, I was mentally ready to switch. I had actually exhausted every method I could uncover except for ligation which I am pretty sure is borderline quackery.

[Never_Enough]

I work in Men's health and men's sexual medicine. I diagnose men every day with pelvic floor issues. It is a complicated field of issues. Nope, it is NOT one-size-fits-all. This is also the most mis-diagnosed area of men's health today. it is treatable - very treatable. It requires patience, trial and error, etc. it is mental health issue as well as physical issue. the key is finding a doctor who specializes in this. Most doctors have never heard of it and don't know how to treat it. it is frustrating. it is hell. It is treatable.
I still stand by my statement that a penile prothesis should never be a treatment for pelvic floor issues.
Paul

The issue is it CAN be treatable in some cases, but many like mine are simply untreatable- there is no answer, so your option is to live forever with average erections because there's a minute chance of improvement in 10 years? Many have PN that lasts 10-20 + years and doesnt improve even with the nuclear options. This is why you can never say it should ' never be a treatment', it should always be an option to those who simply cannot improve.

It feels like another misdiagnosis in itself because there is that line that people believe it can always be cured somehow. That isnt always the case. If someone has had cancer surgery or severe VL we rarely argue that their condition is treatable because of the cases that are. We accept that they are in need.

For example much common help focuses on stretching, strengthening and mind body connections- all of which are barely of any use with PN related pelvic issues- In fact very often stretching makes it a lot worse and the constant pushing of the mental health side of it causes a disconnect between health professionals and the actual condition. Yes it causes a huge degrading of mental health but improving mental health rarely improves the condition.

I would like to write a longer piece on this at some point in the appropriate forum as I think its a missing and under established cause of ED, but coming from someone who is living the nightmare- the thought of an implant has saved me from some horrible times. It should never be discouraged.

Incidentally Dr Ralph- who I saw for my consultation has treated a few with this condition with an implant- although Im not sure whether they had combined conditions.

[Never_Enough]

That’s a fairly irrational misuse of logic. Absolutely, HF is “treatable.” So is technically any other condition or syndrome, essentially. Pills, injections, therapy, pills, you name the condition there is some potential fix.

An implant is the only option at a certain point, and when it is worth taking the leap is up to the individual. For most men, it is not worth continuing to try when there is no sign of reversal after a certain amount of effort. For me, when I had gone about a year without an unassisted (injected) erection, I was mentally ready to switch. I had actually exhausted every method I could uncover except for ligation which I am pretty sure is borderline quackery.

Could you just add who you are quoting here as its not 100% certain? I assume its Paul, but then Im not sure if you were aware the start of my post was a quote. I think this was partly my point as well. Referring to PN, PFD HF et al as treatable kind of dilute the condition a little.

I have lived with this for 3 years and many a time have told people that if I had to choose between this and prostate then I would bite your hand off for prostate, it kills you slowly wrecking every inch of your life from the inside whilst often making you look quite well from the outside. If you live without it, and think you know what its like then think again its a lot worse than that.

I suppose there being a huge spectrum doesnt help.

Someone with a small amount of pelvic pain that can be fixed by mindfullness stretching and strengthening is going to give health professionals false beliefs that everyone is treatable.

When you're urinating all over the bedroom, in burning agony whilst your rectum feels like it has a golf ball shoved up it and touching your penis feels like 6000 volts after 60 hours of physio from one of the best mens pelvic physios in Europe, 3 nerve blocks 2 rounds of botox and a metric tonne of medication its a different story.