I’m wondering if our situation is related to men who have post orgasmic illness syndrome. It is a syndrome related to allergy to one’s own semen and characterized by imbalance in the neurosteroids. Some of those men reported improvements when using Vitamin D or benzodiazepines or probiotics just like us. I’m saying this because my only true recovery about 9 years ago was when I used a combination of Cipro and Hydrocortisone tablets. Cipro alone didn’t do anything, but when I started the hydrocortisone I experienced recovery that lasted for few days, complete recovery with a feeling of gradual relief and warmth in the pelvic area. I was hyper sexual before taking Finasteride so that could have been a predisposing factor.
Autoimmune? Hydrocortisone?
Hydrocortisone for what exactly?
I was prescribed hydrocortisone and Cipro after prostate ultrasound that showed severe inflammation in the prostate although I didn’t have prostatitis symptoms so Dr. thought I had asymptomatic prostatitis and he thought it was the reason behind sexual dysfunction. I posted the brief recovery on this forum back in 2007 I guess under user name genetix. Any how, yes post orgasmic illness syndrome is an autoimmune disorder against one’s prostatic fluid. I have many of the symptoms. So I’m really thinking neurosteroids are not the root cause of our problems. If the damage was permanent I wouldn’t had a brief recovery on Cipro and hydrocortisone. I’m thinking there is an autoimmune reaction that was triggered by Finasteride against our prostate fluids.
2 Likes
I also think that finasteride caused some form of damage to the prostate. I found that erectile dysfunction had been temporarily improved after prostate stimulation. It lasted for half a day. Is it not proof that the prostate is silent?
I do agree. I also felt 100% recovered while on hydrocortisone.
1 Like
Hey Pete love what ur doing but survey in the big schemes of things doesn’t matter. I can promise u I put in a stupid mind numbing amount of time into this to the point I’ve passed out from exhaustion on multiple occasions over 2 years from research. I love everything this organization stands for but survey shit doesn’t matter. How I feel doesn’t matter. But maybe this is harsh and I’m wrong. Don’t take it personally and I’d love to message with u. I’m also insanely busy and stressed right now
So Tomas u think it’s autoimmune and u completely recovered on hydrocortisone as well?
There is someone who reported recovery on very high doses of methyl prednisone long time ago on this forum. I’m not sure how post orgasmic illness syndrome is diagnosed because it is an autoimmune disorder without the involvement of IgE, just cytokines released against prostatic fluid. It seems the only way for us to tell is semen retention for years. If that doesn’t work then probably removal of Prostate altogether which has helped curing two cases in Denmark. I’m just trying to see if anyone here has bloodwork that might help revealing any autoimmune reaction; or anyone who felt improvement with semen retention for extended period of time ( more than a year).
I can assure you that each survey entry very much does matter. Your participation matters more than you think, particularly as isotretinoin entries are far fewer than is optimal. If you’ve passed out from exhaustion researching, what’s another hour of your time answering questions, mostly in tick box format?
3 Likes
Hi @Bigpoppa10040, what you are describing as research cannot achieve the same objective as the survey. The survey has been designed top to bottom with validated measures and extensive liaising and feedback with patients, doctors and professors, as well as a complete review of every post in the 15 years of this forum, to represent what is happening to patients. This is in a standardised data format that scientific professionals will appreciate, and it is not designed to provide an etiological theory. The clinical picture of this syndrome/syndrome(s) that I have to deal with every day (both personally and providing this platform to patients suffering) is not yet appreciated and just saying “lots of people on a forum say xyz” does not cut it. This has been an absolutely crucial objective as to why we bother to provide this site - so we can get things done. We need contributors to help to do that.
We already have scientists expressing a keen interest in this data and hope to talk more about that in the coming months. Please contribute. We put a lot of work into users having this site for nothing, but this is what we need to help move the issue forward. After that you can pass out from exhaustion 
6 Likes
Erect penis size 100% too? Sorry if i asked this before.
I would say so, yes
1 Like
Check out bottom of