It started with a very, ridiculously red eye 2 years ago when I was 39. A red patch in the corner of my right eye that inexplicably, at night or in some social situations would fully inflame to the point where people would ask me what the F was wrong with my eye. Was it the chlorine in the pool or pink eye? Visits to opthamologists ensued, blepharitis diagnosed, eyelid cleaning, steroid drops. No relief. Over a year of that. Health felt shakey, which I chalked up to my approaching 40s. Lots of headaches particularly if I argued with a GF at night or didn't sleep well. The next day after bad sleep or an argument, I would have a migraine, my eyes couldn't track and would sort of float around and my brain felt disconnected. Still had sex and masturbated regularly. GF was worried about my headaches and thought I should see a neurologist.
Then 5 months ago, I experienced a dramatic decline in my health that I did not understand. First there were symptoms down below -- My balls started to ache deeply and constantly; my penis and anus burned and I noticed a few pink spots/pimples on my shaft, and a headache that was different than anything I was familiar with. Persisted for 7+ days, went away for a little and came right back for another 7 days. I was scared and naturally a full panel of STD tests and doctor visits ensued, and all major STDs were ruled out (thankfully, I suppose). I also went cold turkey on Propecia as I became aware of the horror stories of prolonged finasteride exposure. The ball ache may have been the propecia. (side note: it was good to quit the propecia and one thing I noticed was that my penis returned to its normal flacid size and I had unprovoked morning erections for the first time in years. Hair still in head for now)
In addition to the STD like symptoms, I also became affected by a fleet of other severe cognitive and physical issues that had me convinced that I was a very sick person, and possibly dying. In no particular order: Bouts of irritability that felt animal like and out of my character; my ordinarily stressful attorney work felt completely unmanageable because it was hard to even find the will to write a basic email. I had a terrible headache the traveled including down the side of my face; a buzzing in my head -- sometimes my head felt full of chemicals swirling around and other times empty like an essential element was missing. My joints ached, I had a lump in my throat and a pain in my neck that were very uncomfortable, a daily fatigue set in that required a mid-work nap. I felt like it was hard to open my mouth to speak, and occasionally, even during work, words escaped me or turned to word salad mid conversation (not good). A kind of overwhelming anxiety and despair above and beyond my concern and focus on my health. During conversation, I sometimes became completely disconnected from context and unable to even comprehend what people were saying AT ALL. Not to mention nausea, light and noise sensitivity, heart fluttering, a chilliness in my legs and arms, balance issues, weight loss, grainy uncomfortable eyes, dry mouth and a weird taste. Even this list is incomplete. I told my sister and mom one night that I thought I may have metastasized testicular cancer.
Shortly before I discovered this forum, I made the independent connection myself; that the symptoms were triggered by sexual arousal and release as I (luckily) spotted the pattern --- sickness, recovery, sexual activity, relapse. I was basically laughed at by my former GP when I asked him if there could be a connection to orgasm (and/or my use of propecia). He told me I needed to see a psychiatrist. Nevertheless I knew the connection was real and undertook to abstain from sexual activity of any kind for weeks and weeks and to my surprise started to feel really good (only to completely relapse after O further confirming by hypothesis). It was during that time, I found and began perusing these pages, reading page after page of thoughtful guys experiencing the same nightmare. Reading the original Waldinger study was an a-ha moment for me as the disease clusters mapped so well to my crazy portfolio of conditions.
For the last 10 weeks I have adopted an intensive supplement and prepack strategy cribbing off of Nanna1 and Quantum, to whom I am deeply indebted. It took a while but the daily regimen has appeared to reach absorption levels where it now makes a difference. I have also now finally seen a neurologist who was engaged and receptive. He prescribed indomethacin, has ordered me an MRI and MRA and wants to have me see a urologist and a Mast cell specialist both of whom he thinks will take particular interest.
Since the supplements have finally started to work I have a couple observations about my condition --
- I get mini-POIS by arousal not leading to completion. Lighter symptoms and less than 24 hours of sickness
- The duration of my symptoms from a single release appears to have significantly decreased as well as the severity. I know its a bad one when my throat is affected and recently have had less of that. I am usually back to a relatively functional baseline with 36 hours.
- I start to feel really good if I abstain from release for 5 to 6 days; however I am trying to release more regularly now in hopes that I can flood my system. No science behind anything I am doing so who knows if it will work.
- The burning, and blue-ball pain have become sporadic less than 1 out of 10 POIS events. The ball pain may have been solely the propecia/quitting the propecia.
- I am VERY careful with semen after release. Have to make sure it does not have prolonged contact with my skin; must shower immediately after. Have not had any pimpling or rashing recently; though sex with a condom as opposed to masturbating has an exposure element and my penis is always itchy now after sex no matter how quickly I hop in the shower.
- The red eye has dramatically improved during the time I abstained. Now that I am aiming for more regular release it sometimes reddens up but is generally much better.
- Like others, multiple releases in a short period guarantee a full POIS event. The supplements still help but I had sex twice in 10 hours and was sick for 3 days.
- I told a new girl about the condition. It helps to not hide it and in fact gives you power over it.
- I have had a weird time with Niacin (non timed release). First, I love how it feels when it flushes. However, I only flush 1 out of 5 times I take. I was actually wondering whether others experience the sometimes yes, sometimes no flushing phenom. It was particularly interesting to me because of the continued use of Niacin by physicians to clinically diagnose persons with schizophrenia (affected people DO NOT FLUSH from Nicacin, apparently).
- In addition to the supplements and pre-pack, I also have started non-THC laced CBD oil. I think but am not sure if it helps.
- I am trying to learn more about proper relaxation and other self care techniques and in some ways my quality of life has improved. Fewer drinking nights, late party nights etc, more focused on sleep and peace of mind.
- I am interested in adding dietary /probiotic approach but there is a sea of information out there and it is rather intimidating to try to get a footing especially when so much contradictory info abounds.
So that's my story for now. I don't expect the MRI to turn up any thing, and overall am more gearing up to treat this as a chronic condition to manage. Obviously having this forum as a resource and the increasing research and awareness that is is happening is a blessing.
As an aside, I wish I had any science background so I could contribute to the treatment discussions, but I have no aptitude and am purely free-riding off of your efforts. I take supplements others here are taking by the handful (in your dosages), knowing there is some risk in doing that, but I can't argue with the results.
Thanks all for having me. If you have any questions about my experience let me know.
