Sex After Cancer

The surgeon who performed my first surgery, a total colectomy and left oophorectomy had no personality. He was always very serious and didn’t fill me with any warm fuzzy feelings. I was lying on the operating table, in the cold, stark white, sterile OR when Dr. No-Personality came in the room and asked if I had any last questions before the surgery. “Yes” I said, “One question: How long do I have to wait to have anal sex after surgery?” Yes, I actually said that! I just wanted to see what stiff, Dr. No-Personality would say, and break the tension and alleviate my anxiety. The entire OR burst out in laughter, except for him. He made an “Ahhhhh” noise, backed away and rushed out. The room erupted into laughter again and one of the nurses leaned over and whispered in my ear “He is a born-again Christian.” I whispered back, “So am I.”

IT WAS A JOKE! Having Ulcerative Colitis since I was a teenager, I dealt with a lot of diarrhea and abdominal pain. Anal sex isn’t something I ever considered or desired anyway. That is what made it funny to me! Not to mention the staples involved in the anastomosis.

Six subsequent major abdominal surgeries (different surgeon) followed including a hysterectomy, splenectomy, 2 HIPECs, nephrectomy and one to remove a loop of small bowel that was causing an obstruction, after each one, I always asked “How long do I have to wait to have sex with my husband?” Every time his answer was the same “at least 6 weeks depending on how you feel.

During my first HIPEC surgery when cancer was scraped from my bladder, my right ureter was inadvertently damaged so my surgeon placed a ureteral stent. They followed that up with 8 weeks of radiation on my bladder. Unfortunately the radiation went through my vagina causing permanent damage. The ureteral stent was changed every 3 months for 7 years until I had a right nephrectomy in 2012. The stent was a little piece of hell on earth. It hurt EVERY day. It made just peeing hurt let alone having sex.

I have an ileostomy, a giant scar, and radiation damage to my vagina. I’m underweight. The hysterectomy induced menopause so I am dry in places that used to be wet and wet in places that used to be dry. I have a Hickman catheter sticking out of my chest, to which I hook up a 2.3L bag of IV fluids for 10 hours every night. Stop and think about that for a second. Think about the size and weight of a 2 liter bottle of Coke. I hook that up to a tube sticking out of my chest and sleep with that every night…..very romantic.

Sometimes I’m amazed my husband still wants to have sex with me. With all my crap he acts like nothing has changed. Amazingly, he still finds me very attractive and desirable. Part of my brain thinks, how could he still want me? But another part thinks if all this stuff happened to him it wouldn’t have changed the way I feel about him. Sometimes I find his relentless pursuit of getting my clothes off annoying but then again if he didn’t want me that would make me feel terrible too. I guess that puts him in a lose—lose situation.

Here is a little secret I think many women forget; men need to be wanted. When wives have sex out of obligation it’s not the same to their husbands as being wanted or pursued. I’m sure they’ll take the obligatory sex but they also want us to go after them. I want to share one technique that helped us during treatment and all the years of painful stents. When I noticed I was avoiding any physical contact included hugging and kissing him when he came home from work because I didn’t want to encourage him then have to turn him down, I placed a 6 sided die on the nightstand next to our bed. I told him each side on the dice represented how far I was willing to go each day from 1- “hug and cuddle me but I hurt too much to go any further.” 2- “I want to touch you but I don’t want you to touch me”. And so forth all the way up to 6- “It’s on baby, I’m going to rock your world.” Of course I controlled the die and there was only one because my husbands would always be on 6 . This helped us a lot at the time. I didn’t have to worry about sending mixed messages or hurting his feelings and he didn’t feel rejected time after time. We did this because we aren’t exactly great with communication. You can set your own scale and what each number on the die means for you and your spouse.

Sex is a little more complicated for me now. Without the stent, I’m not in major pain every day anymore. I’m still on TPN every night, still dealing with body issues and I’m 40 now. I want to want to have sex with my husband but I usually don’t and I’m sad about that. I’m sad for me and for him. When is Viagra for women going to be available in the US!? Once it is, will a magic pill fix all my problems?

According to the Mayo Clinic: Many women find that the stresses of daily life deplete their desire for sex. Highs and lows in sexual desire may coincide with the beginning or end of a relationship or major life changes, such as pregnancy or menopause. For some women, orgasm can be elusive—causing concerns or preoccupations that lead to a loss of interest in sex. Desire is often connected to a woman’s sense of intimacy with her partner, as well her past experiences. Over time, psychological troubles can contribute to biological problems and vice versa. Some chronic conditions can alter a woman’s sexual-response cycle—causing changes in arousal or orgasmic response.

I check every one of those boxes, it’s no wonder I feel the way I do. Am I alone?