Unique case of hard flaccid ~More than simple ED finally taking the Risk

[Waqas007]

Hi I am member of Frank talk family from last 7 years , andi open frank talk weekly but then some time stop visiting that website knowing that even implant is not a fix for me

*My story*
I am from Pakistan born with rare genetic condition Mucopolysaccharides that is a life threatening condition and mostly people die before they reached to their 20s
Which comes with several skeleton issues which left people into very miserable state before they die
It took me 27 years to find why I looked different from others to diagnose myself with that condition after the death of my first cousin who was suffering from same condition...
Fast-forward
I think I was doing okay till I was 13 to 14
Had an accident on my bike while coming back from school between my prenieum ...
But that thing was not considered by me because I was masturbating daily 5 to 6 time till my 20s laying straight in my bed
After I turned 20 I started noticing some changes in my body
I have to clench myself to orgasm when I say clench it means really with force
Weak urine stream that changes shapes sometimes it's split urine sometimes it's even difficult to start urination
No connection of brain with my penis while standing...
I used to watch porn and can't get hard so I kept on stimulating myself and watching porn every day and used to cum in that fashion for next 10 years...
I knew something was wrong with me when I started noticing that I don't get morning wood,I thought because I jerk so regularly that my penis doesn't have urge to get hard ...but things were not like that
I went for my first sexual encounter with a girl and she said you are not getting hard so she started stimulating my penis in missionary position and I get hard hard like 30 percent....but never able to get fully hard I regret all those years and decided not to watch porn and jerk off .. but things didn't improve....
After few months I started to check if I can get hard my watching a porn and stimulating myself in same way but reality hit me hard when I suddenly lost the erection and felt pain in my penis and felt numb and weird kind of sensation (not pleasant) was always present...
I started to ignore the situation and thought it will heal with time but everyone stayed the same
Weak urine stream
No morning wood
Penis started feeling like stone in flaccid state
Sometimes numb
Sometimes engorged , sometimes glans with normal size and shape some time too rubbery that can't be even touched
I started visiting urologist and they prescribed me Cialis
It didn't work
I did Doppler twice which shows arterial insufficiency because my PSV value were below average
Penis started curving to left even in flaccid state....
Sensation started reducing...
Constipation to that level where I can't pass the bowl ...
No hunger reflux
No signal to my brain if my bladder is full and I should go to washroom to empty my bladder
I went to urologist to see if it's Peyronies he said no
I went to gastroenterologist he gave me medicine for constipation but it never worked....
I got hernia which I got repaired during COVID-19
Things started getting worse to that level that penis started feeling no existent I started blaming myself for chronic masterbation... Porn addiction for years and years
I decided to never watch porn and quit masturbation but everytime I tried that I started having pain in my pelvic muscles and the only cure for that pain was if I masterbate
I started looking into prostate problem but doctor never paid attention....
I started searching for issue on reddit and got to know hard Flaccid syndrome...where different people were having different issues but one thing was common for all of them that's hard rubbery penis with no erection for years. .
I started to do everything that was meant in those posts so that I can get rid from that hard flaccid nature of penis but it never went away
I got hemmroids surgery
I got cystoscopy
I got colonoscopy done to find out why these symptoms are happening...but zero improvement
Even now I can get hard by laying straight and then stimulate myself for 10 minutes and then my hard flaccid state change to normal position and then I get very hard sticky kind of erection like something is stuck there....
I worked on fixing my posture
I worked on doing different stretches to loose my pelvic floor muscles with zero improvement...
Some people relate it to pudendal neurologia
Some people relate it to penile injury due to jelging
Some people relate it to prostatitis
Some people relate it to IBS
I tried to look into everything and started questioning people online to just see if my symptoms match to other
I found some success stories of people curing it with stretches some curing it by curing prostatitis some curing it by nerve surgery some by fixing their GIT issued...
I gave up and started looking for a quick fix with implant but then I found out that implant will only make my penis hard but it will no resolve my other issue of numbness, urinary issue, unable to climax without clenching etc ....
I kept on frank talk for trying to see if someone with hard flaccid syndrome got implant and got their sensation back here I got different kind of opinion....some said it's pelvic floor dysfunction and you should go to pelvic floor therapist some said contractile nature of penis will cause pressure on your penis and it will erode out ...
I came to conclusion that there are very less people who have recovered from this hard flaccid thing
I want a mechanical working dick even if I don't have any sensation to satisfy my partner
My symptoms that are persistent
Penis hard like a stone in flaccid state
Low urine stream
No brain to penis connection
Worst while standing
Continuous clenching to maintain erection
Constipation that doesn't let me empty in washroom
If I lay straight my penis go to normal shape of spongy flaccid state but still I can't get Hard without stimulation
Feeling of numbness
I talked to lot of guy who had hard Flaccid syndrome and got implant but never got a satisfactory answer...... because they had different symptoms
I went to an implant surgeon who is willing to implant me with tactra and fixed my surgery....
I am making this post so that you guys keep me in your prayers because I know that I will be very tough journey for me but I don't wanna be suffering from this situation for another decade...
My surgery is in April...
I don't know if my issues will get resolved or not or may get worse but I am gonna take the risk and start a smooth Life
I don't know if my urinary issue will get worse or not
I don't know if It will fix that feeling of rubbery erection or not ...
I don't know if I will have my arousal back or not ...
I don't know if something will fix it or not.....

[Waqas007]

Sorry for bad English because it's not my first second language

[Kodixx]

Waqas007, very sorry to hear of all those problems you have experienced. Best wishes and will keep you in prayers.

Have you taken enzyme replacement therapy (ERT) and/or hematopoietic stem cell transplantation (HSCT) treatments ? If so any help from those ?

- Chuck

I am making this post so that you guys keep me in your prayers because I know that I will be very tough journey for me but I don't wanna be suffering from this situation for another decade...