I am "allergic" to sexual arousal, AMA

1783

I am a guy in my 20s. Ever since high school, I have had a condition called chronic pelvic pain syndrome. It’s essentially a constant ache in the pelvic/bladder area, just the way some people have chronic back pain or headaches. In my case it started gradually and without apparent cause.

A hallmark of this condition is that the pain gets worse after orgasm. I have this symptom too; in fact, over the years it has worsened to the point where any sexual arousal (not just orgasm) can cause a flareup. This can include such minor things as seeing a racy picture, having an attractive girl brush up against me, or simply thinking about a girl I like. This is as bad as it sounds. A few seconds or minutes of pleasure can result in hours, days, or weeks of increased pain.

I’ve tried, without success, every pelvic pain treatment in the book, from special diets, to physical therapy/stretching/relaxation regimens, to pain medications, to an implanted nerve stimulator. I have seen the very best urologists, neurologists, anesthesiologists, rheumatologists, physical therapists, psychiatrists, etc. All they can tell is that I probably have some rare disorder or injury to my autonomic or central nervous system.

So, the only way I have found to keep my pain from spiraling is to strictly abstain from all sexual arousal. This means no more sex, foreplay, kissing (or ANY romantic contact with women), or masturbation. No looking at women in a way that might arouse me (this means absolutely no porn, or even seeing women in revealing clothing). When an attractive girl walks by me on the street, I often have to avert my gaze to avoid getting aroused. And the most difficult part: no sexual thoughts. When I break these rules, I usually sorely regret it. The last time I had sex, I was in bad pain for over 2 weeks. So, I have not had sex (or masturbated, etc) in a very long time. My libido is high, so this requires every last bit of willpower I have.

Proof/evidence: I have scanned a few excerpts from my medical records. Can post more if people are interested.

This condition causes me huge anguish. I feel I am in a mental prison, being starved emotionally. It’s tragic because before I got this condition, I was thriving in all aspects of my life and had huge ambitions that were cut short. I also went from having satisfying relationships with women, to hardly being able to date.

There are so many facets to this condition and its impact on my life, so rather than write everything out I’ll see what people want to know.

I’m putting this AMA out there because my rare condition and life situation may be of interest to some, and maybe some connections will be made that will someday help me or someone else.

EDIT: some FAQs:

I have tried acupuncture, unsuccessfully.

I am not considering chemical castration, because of the various side effects.

I do get nighttime/morningtime erections, but they do not cause as much pain as daytime erections. Don't know why. More here.

EDIT 2 @ 3 AM EST: Thank you so much for all the thoughtful messages. I am still reading them all and replying to as many as I can.

Comments: 2243 • Responses: 58 • Date: 2013-03-20 18:05:14 UTCsource

lhwang03202427 karma2013-03-20 19:04:41 UTC

OP, I actually have the same condition as you. It took me 5 years to get it treated properly, but I finally found a urologist and physical therapist who have been able to help me.

Here are some tips. I'm no doctor, but I've lived this condition since I was 22, and I'm now 29. The 5 years leading up to my proper diagnosis and treatment were some of the darkest of my life. But you can regain control of this condition (maybe not a "cure") but it is very manageable.

1.To get you started, I would recommend that you read "A Headache in the Pelvis," (http://www.amazon.com/Headache-Pelvis-New-Expanded-Understanding/dp/0972775552). This book was a real eye opener for me, and a bible in terms of treatment methodologies and understanding this condition.

Familiarize yourself with the "Wise-Anderson Protocol" that is mentioned in the book.
Find a urologist and mention this book. Apparently the authors of this book are a huge deal in the field of urology. Any decent doc should know who they are.
Request a prescription for a "Pelvic Floor Physical Therapist." Most hospitals have them, and a good one will be able to help you out.
See if you need an antidepressant of some sort. A lot of the pain and muscle tension associated with this condition is related to anxiety/depression. It's a nasty cycle--each one makes the other worse. You get anxious about your pain, which causes tension in your muscles, so on and so forth.

That's all I have for now. If you wanna PM and chat more, let me know.

Be strong, OP. your condition is treatable, and not as rare as your doctors may have led you to believe.

Edit 1: To whoever gave me Reddit gold, THANK YOU! The 20th was actually my 29th birthday, so it's much appreciated.

Edit 2: Wow, people. I am surprised (and glad) at the amount of interest this IAMA has generated. Thanks, OP for bringing this to people's attention. It's a unique and not-so-well known condition that should be addressed.

Edit 3: If you are suffering and have questions, PM me. I've already answered a few, and will try to help out as much as I can.