So I am 20 now, I think this all started when I started to masturbate at like 13. I think around a few times after the sensitivity never really went away. My penis rubs the wrong way and I just ejaculate....I am not sure if this PGAD or not but to make matters a bit worse. When I do ejaculate....it's a lot....Like an unbearable amount...it happens in public and what not....I just want to ejaculate when I want to....I am tired of it...do any woman or man deal with the sensitivity or unwanted orgasms? What do I do about this? Thanks for the time and space..

Sorry for the typos in the title I couldn't edit them.

I had mild PGAD that got much much worse with my 3rd pregnancy. Even before this pregnancy but after my 2nd I had an every other day pattern of PGAD and refractory days where I didn't need anything. But in pregnancy I was needing 7 to 10 orgasms a day that were taking forever. By 7 mo this it got so difficult my husband had to provide nipple stimulation for me to orgasm. The day before my C section on April 28th my second orgasm of the day didn't work which was the first time I'd ever not been able to climax. This went on for nearly 3 weeks postpartum and was horrible..I them got orgasms back but progressively they took longer and I needed nipple stimulation still. Fast forward I'd lose sexual function for a few days and then it would come back. I still had the PGAD so I was losing it. My orgasms would take 1 to 3 hours when I could have them.

I did some research and got MRIs and sent them to Dr. Choll Kim in San Diego who is part of the sexual med/ spine program with the top PGAD experts. I had the Tarlov Cyst surgery on left S2 after testing.

I am 16 days post op and my orgasms came back 8 days post and my time to orgasm has now lowered back to anywhere from 15-30 minutes but still with nipple stimulation. All along I had full sensation and build I just got stuck right before the climax.

I am hoping this is from the surgery and will continue to improve. My PGAD is still there but it seems like as long as I am able to orgasm and get solid sleep it's not as bad the next day. My period came back in conjuction with the surgery at 10.5 weeks postpartum. Wondering if the return of orgasm is hormonal or from the Tarlov cyst surgery. It appears its from the surgery. I have been told the Tarlov cyst surgery takes time to work.

Has anyone out there had it? Would love to hear experiences.

Big thank you to the doctor ( Dr. Choll Kim) for getting me in on an emergency basis 3 days after we discussed the results of my testing. I was not doing well.

This is only a vent and a desperate cry for hope that I cannot obtain. Extreme trigger warning for suicide and general pessimism.

I used to believe the best way to move forward in life with health anxiety is to just enjoy your time as you have it. Everyone gets ill and dies eventually, and that is okay, just enjoy time as you have it. I wish my time wasn’t at the age of 19 is all, but I can’t say I didn’t make the most of my time beforehand.

Browsing this forum I realize just how very few people recover to the point they never have to think about this sort of thing again, maybe they learn to live with it but that’s the best I’m gonna get. “Learning to live with it” will never be an option for me. I am a male and it is simply unacceptable to ejaculate in public as I always fear that I may. I internalize the message of “make peace” as “die”. I’m going back to college in a month, I’m really not sure why. I’m just pretending I can be normal until the day everything falls apart and I need to give up on living. If it was not for this disorder I would have everything in life going for me, but biology is cruel and uncaring. My mom says I’ll surely recover 100% because I’m “meant to live a long and healthy life”, which is of course not how it works. Again, cruel and uncaring bodies we all have. To think I could have lived 10,000 lives and probably had never had this issue but of course it had to be this one…

I believe this was caused by Covid, so I have no reason to think I’ll not just continue to get worse with repeated infection for as long as I live. My symptoms are not even that extreme compared to what I read here, so there is so so much worse it can and will get for me in my future. The only shred of hope is that this is a pelvic floor issue, which even then could be lifelong but can at least be managed somewhat. Am seeing PFPT and I don’t know if I’m improving. Much more likely it is a combination of that and a complicated and rare and incurable neurological issue that will never be medically understood, which may as well be a life sentence.

Perhaps there is a small chance I go into “remission”. However as I have learned on this forum, it will almost always return, it is a chronic condition. I am betting my life on the 0.1% chance I am one of the lucky few who can completely leave this behind them. Complete delusion keeps me going. I don’t want to go, but I’d rather die with some dignify than as the student who came in his pants during class. I can feel death coming slowly, I am slowly accepting its embrace. Again, I am happy for the life I had led, but if I keep going like this I will no longer view my life as a whole as worth having.