@jeffmarc

Excellent summary!

Just to add a few remarks about my own experience. I experienced some penile shrinkage as a result of starting Lupron (T < 3) and not using a vacuum pump or Cialis/Viagra to increase blood flow to my penis. My understanding is that penile shrinkage is directly related to prolonged lack of erections (nocturnal and daytime) such that the spongy penile erectile tissue undergoes atrophy over time. This can be ameliorated by regular stretching of the tissue using a vacuum pump, Cilais, and Trimix if needed. I regained some size when I discontinued Lupron and was put on Testosterone Replacement Therapy by my MO. I also began regularly using a vacuum pump, 5mg Cialis daily and Trimix a couple of times a week. With the Trimix I was able to achieve an erection sufficient for penetration.

I experienced fatigue, hot flashes, muscle loss, depression, loss of body hair and some joint pain while my testosterone (T) was near zero as a result of one year on Lupron and an additional year off Lupron but T didn't recover. As you point out, the symptoms are due to a lack of T, not the actual drug (ADT) itself. Symptoms rapidly disappeared when my T was restored.

As the original poster stated, the shrinkage is insult added to injury. It can be reversed to some degree in most cases from what I have read. All therapies for achieving an erection are becoming increasing ineffective for me. So, I am scheduled to have a penile implant placed later this month. Extensive reading on blogs (franktalk.org extensively discusses ED and treatments) and consultation with urologists indicates men can regain lost size over time with regular use of a penile implant. I will report on my anecdotal experience in the future. Good luck!