2 years on, still dont know the Problem. Really frustrated !!!

[Saynotopyronie]

Hi guys,

I am posting here again after around two years since i am literally out of options. It sucks when you got all the tests done but even non od the doctors have been able to help.

I will try to keep it brief. Two years ago i started experiencing extreme pain during ejaculation. Right at the time of release. I started developing downward curvature and started to feel some indentation on underneath side of the shaft ( Corpus spongiosum ).Degree of bumpiness / Indentation increased with time as did the pain to the point where i could not even masterbate or have sex. Needles to say, with downward curve and such indentation, ED was also on the rise. I gave it a rest for few months. Morning and nighly Erections started to come back, so did the noctural emissions (expierenced first NE during abstinence after 7 years). Tried going at it after few months break to see the progress. Pain was still there but somehow the tightness in spongiosum tube during ejaculation was bad and painful. Went to the doc. THey did x ray, ultra sound, even MRI and did not diagnose much. The gave me cialis 5 mg nighly for ED. I have been using it for many months now and somehow that sharp pain during ejaculation is gone but indentation is so bad that it feels like a bumpy road down there. and During erection penis gets so tight that it hurts, and during release it literally feels that the tube is blocked and not letting it out unteill it does with mild pain. Just feels extremly tight , painful and really really uncomfortable. I have no idea what to do now, where to go serously. I have noticed, everytime i try to go at it after some period break say few weeks, its feel healed and much better. But as soon as a start doing it couple of times more, it goes down to square zero the way it was. Is this my life now? Keep guessing how long not to do anything till its gonna heal completely?. Has anyone ever had indentations healed ? I am 32. Thanks for your time reading the post. Would appreciate any help.  

[TonySa]

I'd consult w a different androgist for a second opinion.

[jan.schaller1958]

Hi guys,

I am posting here again after around two years since i am literally out of options. It sucks when you got all the tests done but even non od the doctors have been able to help.

I will try to keep it brief. Two years ago i started experiencing extreme pain during ejaculation. Right at the time of release. I started developing downward curvature and started to feel some indentation on underneath side of the shaft ( Corpus spongiosum ).Degree of bumpiness / Indentation increased with time as did the pain to the point where i could not even masterbate or have sex. Needles to say, with downward curve and such indentation, Erectile Dysfunction was also on the rise. I gave it a rest for few months. Morning and nighly Erections started to come back, so did the noctural emissions (expierenced first NE during abstinence after 7 years). Tried going at it after few months break to see the progress. Pain was still there but somehow the tightness in spongiosum tube during ejaculation was bad and painful. Went to the doc. THey did x ray, ultra sound, even MRI and did not diagnose much. The gave me cialis 5 mg nighly for Erectile Dysfunction. I have been using it for many months now and somehow that sharp pain during ejaculation is gone but indentation is so bad that it feels like a bumpy road down there. and During erection penis gets so tight that it hurts, and during release it literally feels that the tube is blocked and not letting it out unteill it does with mild pain. Just feels extremly tight , painful and really really uncomfortable. I have no idea what to do now, where to go serously. I have noticed, everytime i try to go at it after some period break say few weeks, its feel healed and much better. But as soon as a start doing it couple of times more, it goes down to square zero the way it was. Is this my life now? Keep guessing how long not to do anything till its gonna heal completely?. Has anyone ever had indentations healed ? I am 32. Thanks for your time reading the post. Would appreciate any help.

I agree with Tony. Get a second opinion.

[bustedchubb]

I third that, get another opinion.  I had similar issues but mainly with urination and burning post urination, ultimately I did have a cystoscopy done to rule out a stricture and more or less confirmed it was pelvic floor dysfunction that was the issue.  What your exact situation is, who knows, but that's the point, having an engaged urologist who will do the proper testing is key.   The uro I ended up with was the 3rd one I seen and luckily for me he was the Peyronies Disease specialist as well and a reconstructive uro surgeon.   I guess the 3rd time really was the charm!

[Saynotopyronie]

Thanks for your replies and insight. Thats actually has been my biggest conundrum. I have had atleast 3-4 different urologist. I had had even penile MRI done. But since i dont have an upward bend, none of the docs took it as pyronie. I am sick and tired of that fact that i have hardly seen any literature on downward curve. Even here i have not come across any post with similar problem. As far as i know, i have not read anywhere that anyone is experiencing sharp excruciating pain just at the point of ejaculation. The pain lasts for a second as the semen passes through that norrowed / indented corpus spongiosm area. It feels that you have put a thumb on a hose but still water is deperately trying to come out and somehow it does. Just imagine the tightness and pain i have to go through at the point of ejaculation. Moreover, over time my ED has been ever increasing but i have noticed that ever since I have started taking Cialis 5mg, nighlty errections have come back and some what errections are better. Even the magnitude of pain is also better?

I am looking for other urologists aswell. My question would be. Should I be hopefull? Could this thing heal on its own? Cialis 5 gm per night insures that blood is going in the penis but does it also heal the damages? Would it help more if i increase the dose to 10 mg since thats the only thing i have ever been prescribed and somehow shoed bit promise. I know you guys wont be in a position to tell me to increase the dose without docs advice. I guess at this point i am just venting. Dont know what to do really.

[TonySa]

Urologists know Peyronie's can be a downward curve.  I suspect what they are saying your downward curve is a natural cogenital curve and you don't have Peyronie's.  Have you always had this downward curve or is brand new and you never had it before?

[Saynotopyronie]

I dont think i have had this downward curve since birth. Its just been 2 years that I start to experience pain during ejaculation and i noticed a bump on the underside. During these two years, this bump / Indentation has spread across the under side ( along Corpus spongiosm ). Like a road used to have one spead breaker but now there are like 4-5. I can also feel a vein going through the underside of penis alonside tesitcles and this vein feels super inflammed and gets stiff during errection  and hurts like crap. I dont know what the hell is going on here. Pardon my frustrated language here.

[AntoinerSpain]

Hi

Your story sounds kind of like one I read somewhere on the internet but the guy had compromised his pelvic muscles in his youth and he suffered the symptoms for 9 years. He recovered by doing pelvic therapy for years and changing his lifestyle forever.
But I do not really know man he even talked about more muscles involved and many more factors, is pelvic floor really that powerful?

Regards

[jan.schaller1958]

If you are anywhere near Köln I'd go see Dr Birkhahn, https://youtu.be/67GyrCdn7gQ
He seems to be an expert.  

[Saynotopyronie]

Thanks guys. Appreciate the feedback. Will see what can I do with the suggsted Urologist.

For now I have set a goal. Kind of a self experiment if you will. What I have experienced till now is the fact that nofap led me to have first noctural emissions after around 7 odd years. Secondly I started having morning wood after many many years following the nofap period. So something must have healed.

What I cant understand is, when i started taking Cialis, EQ went up and I would have regualar errections also sometimes during the days and definitly at nights. But now I have been taking 5mg Cialis for around 4 odd months but now i hardly get day time errections and nightly errections have become mild.

My last resort is trying nofap for a month this time while taking cialis 5mg. If it does not work i will try another nofap with 10mg cialis. If both dont work than i am done. Done know what else could i do. Will keep posting here. Cheers !!!