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Back again ...

Posted by scottbeammeup @scottbeammeup, Sep 10 4:49pm

I just hit mid month 5 of 6 on Orgovyx today but got very depressing news from my sexual health doctor. My testes have atrophied to the point that there is a very good chance I may not recover testosterone when ending Orgovyx next month. He also said he's fairly sure that's the cause of my anorgasmia.

I asked what that means and he said I will have to start looking into bone density tests, heart tests, insulin tests, etc because they don't just look at the duration of ADT they look at the duration to recovery.

I asked if testosterone can be supplemented and had a brief moment of hope when he said "yes" but then added "in two years." So I was looking to end Orgovyx next month and start to recover by the end of the year but now it seems I'm in it for the long haul.

I'm second guessing my decision to get treatment. I probably would have had at least 2-3 good years before metastasis and now I'm looking at two years of unhappiness and potential extended side effects.

FWIW, I was so overwhelmed walking back to the subway that I went into an Episcopal church just to get some peace and quiet. I was the only person in there in a city of 1 million+. It's a GORGEOUS old church--60 foot ceilings, chandeliers, stained glass, the works. I had a good cry, then started laughing at the absurdity of praying in a church, to a god I'm not even sure exists, for the ability to have an orgasm.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

scottbeammeup | @scottbeammeup | Sep 12 12:03pm
In reply to @heavyphil "Scotty , Take it from someone who has been mentally beating himself up for the last..." + (show)
@heavyphil

Scotty , Take it from someone who has been mentally beating himself up for the last 5 yrs for selecting Surgery instead of SBRT.
I have a number of side effects - all that you have and then some! You cannot predict how your body is going to react to any given treatment - especially with THIS disease!
It is equally frustrating to be able to achieve orgasm, but with a limp, shortened and shriveled penis - thank you, surgery! - that’s good for nothing. I’m not sure your anorgasmia has anything at all to do with reduced testicle size - and neither does your doctor. They ALWAYS build in lower expectations to their treatments.
I am sure you were exposed either by word or in writing about ‘possible’ side effects with ADT/SBRT, but they PALE compared to surgery so no one ever thinks they’re gonna be in that poor outcome percentage.
You made the right choice at the time and NEVER LOOK BACK AT IT because it’s a wasted exercise.
My late cousin had a saying: If everyone sat around a table and put their troubles on it for all to see, in the end you would happily take your OWN back!
Just hang in and see what time brings you. And BTW, don’t bd afraid to go online and look into some of these male sex toys that are used for masturbation. Some of them vibrate and actually get warmer than the real thing. I am not embarrassed to say that even in my debilitated sexual condition, I found one that gave me orgasms that almost f****ing killed me!!
Never experienced a total body orgasm until that little toy came (sorry) my way…hang in there buddy, better times coming (oh man again?)😁

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I have one of those vibrating toys and it feels great but just can't get me there. I like your late cousin's way of thinking. Thanks

REPLY
scottbeammeup | @scottbeammeup | Sep 12 12:05pm
In reply to @chipe "I am an Episcopal Priest. It is quite acceptable to pray to have an orgasm in..." + (show)
@chipe

I am an Episcopal Priest. It is quite acceptable to pray to have an orgasm in church. He wants to be with us in ALL things, not just good things.

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Thank you. That's actually refreshing to hear!

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