Did your doctors talk to you about the potential impact on your sexuality with the treatments that were given to you are offered to you?

Lee:  My husband had prostate cancer, and that is one of the reasons why I got fast tracked so quickly through the urologist.  My husband had a personal relationship with the doctor and used to talk to us about sexuality.  Here I was now at a stage where I needed to talk to someone about sexuality because of what was going on with me. But, unfortunately, because of my husband’s problem our sexual activity had come to a halt. But nonetheless, sexuality is a thing that can be physical. But my sexuality is very mental and I’ve been able to keep a very good loving relationship with my husband. I think I must be one of the luckiest women in the world that I could deal with his problems and then not let it destroy our marriage. Here we are together, and our relationship is even stronger than it was when we first met.  We’ve been together for 40 some years, so he’s a part of me, I’m a part of him sexually. That’s where I can take it and I’m a happy woman.

Camille:  When I was going through these difficulties in the beginning, I remember going through the meeting with my surgeon while my husband was traveling. I remember and I actually recorded it on my iPhone so I could play for my husband and I ended up not recording half of it. But I remember him talking about what’s going to happen with all my parts, and I remember thinking it sounded so logical.  There were going to be therapies afterward, they mentioned about using dilation afterward. I just remember thinking, all right, well, that sounds good, not even really thinking or wondering if they would remove the vaginal wall. They removed the exterior vaginal wall. I remember explaining to my sister and she was just like, “What? How do you do that?”  I replied “I don’t know that’s what they do.” It was like I just listened to it and I really just put my whole trust in to everybody. I think you really have to do that, you have to pick your doctors and you just have to go with it. You got to go with your gut and know that these are ‘my people.’ I’m sticking with them, thinking the new bladder was going to be great. I was a young woman and I had a hard time making the choice, but I felt good about it. “You’re going to be able to urinate,” I thought.

I had the minimally invasive surgery, so I didn’t have a lot of scarring. Everything was awesome it, looked great. Everything was fine, but once the complications came on, everything fell apart. I had a foley and super pubic catheter for about 18 months.  I wore maxi dresses for two years, it was hilarious.  My husband and I laugh about it. He was traveling anyway and I was living in Vermont with my son so I just kind of hold up like a cocoon.

I just remember I was not even thinking about intercourse. My husband would just say, that’s the least of our worries, man, we’ve been together for over 30 years. We met in college.  We knew we were going to come back, but it’s been a long time now. But we are very creative people. Obviously, you can be very intimate and close, without being intimate and close, but I’m 54 years old. I would really like to have that back and I would like to have it back for my husband. I feel really bad for him.  He doesn’t want me to feel bad. He’s good, buy you know, this is just part of life. Sex was our biggest stress reliever in our life with two kids, money and living in Connecticut. It was a good thing to do, I really want that back. I’m being very honest; I hope it’s helpful. These are things that don’t get talked about because it really, isn’t important, but it isn’t the primary thing. The primary thing is keeping your life and that’s all we wanted to do. So now I’ve kept it.   It has finally just gotten to the point where I’m okay, I need to make this happen. I need to make choices and do something, so that we can be intimate again, be a couple again. There wasn’t a lot of talk about that ever.

There was never a discussion about having a full hysterectomy ever by anyone. It just wasn’t the point. I didn’t bring it up and it wasn’t brought up.  When my girlfriends talk about my post-menopausal thing, I just crack up.  Sometimes I wish I could forget I have that. Sometimes I forget that was the operation because it was an operation within an operation. It did not feel like it was related to my bladder cancer, so it didn’t really matter. It’s almost like it didn’t happen. It was like a two for one for me as a woman.   I didn’t have to do it separately. The whole intimacy thing is a huge part of this for younger people, older people and everyone, including men too on their side of the perspective.

It is a big thing, and I just want to be intimate again. A few weeks ago I found a program at Yale, and it’s about sexual intimacy and cancer.  I was thinking it was just going to be this quick appointment and it turned out to be this amazing thing that I didn’t even see happening with these fellows, a psychologist and this amazing gynecologist. They basically validated every feeling I had. I didn’t feel like a crazy person for the way I was feeling. I thought I was losing my mind; they were amazing, and I left there with a plan.  There were a lot of people with humor there, and I wish I would have known that before.

It was right in my backyard. My oncologist didn’t really know about it either. I sent him a note about it. I would have talked about this issue sooner, but there’s just so many other things to worry about.  Just getting your CT scans and just getting your body back and having a diversion, dealing with wearing pee on your stomach every day. All that kind of weird stuff, so the whole sex thing just goes to the wayside.

Karen:  When I was going to treatment, I felt like I was radioactive.  I was concerned about hazardous drug handling and things like that. I wouldn’t let my husband touch me for a week after I got my BCG. Then after I felt like I was on fire down there all the time. So that wasn’t too conducive to having any sexual relations. Then I was so flipping tired and exhausted from the BCG. I was not prepared for that fatigue at all. Then afterward, I guess because I still have my bladder, no one really kind of talked about it. I will say the experience that I had with my husband when he had his bladder cancer surgery, the team talked about that right from the beginning. They followed us all along the way.