Others who had a radical cystectomy

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Asquared65
Posts: 68
Joined: Wed Apr 07, 2021 1:51 pm
Location: Omaha, NE

Others who had a radical cystectomy

Postby Asquared65 » Mon Jul 26, 2021 11:04 am

I was wondering if there is anyone else who has had a radical cystectomy on this forum. I would like to hear how this has affected your life and what you have done to make your way through the challenging process.

Here is my story:

I was diagnosed with bladder cancer in 2018, when I lived in Iowa. I went to University of Iowa for chemo and for my radical Cystectomy. It was around six months or so after the operation before they started to work on my ED. First I took Viagra max dose of 100mg, it did not work. I then went to a ED specialist at UIHC who then had me try Cialis 20mg, I noticed a start of an erection with it. Then was given a Trimix prescription. I filled the prescription twice and continued to raise the dosage to the max prescribed. Only had slightly better results, semi hard erections but not hard enough for penetration.

My wife and I moved to Nebraska, looked for an ED Doctor here and thought I found the best possible one. I went over my history hoping he would try a different dosage of Trimix. He told me with what I described to him he did not believe Trimix would work for me. He said my only option was an implant. He went over the basics and I liked what I heard, so he wrote a letter to my insurance company and they deferred a yes or no answer until I meet my deductible. One of their patient representatives called me to give me the news. I contacted the Doctor to see if there was something more he could do and he responded back that there wasn't anything more he could do.

I did some reading on the web and learned about VED pumps. I contacted the Doctor and he said it possibly could work for me along with taking Cialis. So again it goes through insurance, deferred again due to I had not met my deductible. Once I did meet my deductible, I finally received a VED. I have been using and experimenting with it and taking Cialis. I have succeeded in getting and maintaining an erection for 30 minutes give or take! Currently I am satisfied with this.

I do have thoughts of proceeding to see if I could have an implant this year since I have met my deductible. I have questions though. Should I do it? What is the operation like? Recovery time before I can go back to work. What is the process so I have a properly functioning implant? How long it takes before can fully inflate and have sex? What is the longevity of an implant? What does it feel like flaccid and erect? etc.

If there are any other RC survivors on here I would really like to hear from you.
56 nerve sparing radical cystectomy after diagnosis of Bladder cancer survivor, 2 yr plus. Pills and trimix did not work, VED Plus cialis, working for now. Interested in others experiences in getting implants.

Asquared65
Posts: 68
Joined: Wed Apr 07, 2021 1:51 pm
Location: Omaha, NE

Re: Others who had a radical cystectomy

Postby Asquared65 » Mon Jul 26, 2021 11:20 am

A couple things I forgot to add to my original post. I have an urostomy bag, decided that was my best option. Two years plus down the road not sure it was the best decision. My surgeon said could modify it to an Indiana pouch, but after doing some research on that not sure it is a better option.

Another thing is the loss of my ability to cum. I wonder how others deal with this fact of life.
56 nerve sparing radical cystectomy after diagnosis of Bladder cancer survivor, 2 yr plus. Pills and trimix did not work, VED Plus cialis, working for now. Interested in others experiences in getting implants.

Conesus7676
Posts: 4
Joined: Fri Aug 16, 2019 8:03 pm

Re: Others who had a radical cystectomy

Postby Conesus7676 » Thu Jul 29, 2021 9:03 pm

Yep, same for me. RC in 2017 with urostomy pouch. Trimix works great for me.
2017: Bladder cancer, RC with IC. No erections. Use Ring, VED, Trimix.


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