View from the Chair: What Patients Want to Know About Sex on PD and are Afraid to Ask

When I worked my way through college as a nursing assistant and then a unit clerk at a tertiary care hospital, I had a firsthand view of interactions between patients, nurses, and doctors. In one memorable encounter, a physician came into a patient's room and, entirely in medicalese, “explained” a series of scans the patient would need. The patient nodded along—and as soon as the doctor left the room, asked me, “So, what did he say?!” I never forgot that communication requires both parties to understand what is said. And, when it comes to sensitive topics, like sex, one party may never share his or her concerns.

Here are some comments made in various Facebook groups, with all identifying information removed. I want clinicians to have a window into the body image and sexuality concerns of people on PD—so you can be proactive and ask your patients about this important aspect of their lives. People need love and support. We don't want relationships to break down unnecessarily just because WE are not comfortable having these conversations.

Concerns Before PD Training

People—whether or not they are currently in a committed relationship—worry about how their lives will change once they start PD. Communication around issues of sexuality are not just challenging for you. These conversations can be hard for patients and partners as well:

• “I am scheduled for surgery consult next week. I have been worried about how my life will change. The nurse's presentation scared me more. I'm glad to know there is life after pd. the internal coil—does it cause any pain or problems when intimate?”

• “I am starting training in a week so I've only had my catheter 2 weeks. My fiancé and I have been intimate in ways other than sex, but I don't want things to change too much in that end. I'm a little more self-conscious and I'm wondering are people still having regular/ missionary sex? Have people had a convo with their partner?”



• “I just ordered lingerie, hoping my sex life doesn't change and it makes me more confident.”

• “Starting dialysis is a major life event. When I started I felt like I was losing my career and myself...I silently cried inside for months through the adjustment period. I did not have the emotional energy left to deal with my husband at that time. I didn't know what my life would look like or if I would survive the fiasco it had become. I learned that the most important thing for each person is to come through the "mourning" process and find your new normal and internally accept it. (I told myself, This is what life is right now, so let's get back to living). Make the most of each day the best you can for that day. If your having a really bad day turn on some music you love. This is a battle you can win. Sometimes it just takes a little time.”

• “I'm not in a relationship but it def makes me not even want to date to potentially get into one. I'm so concerned about the tubing on my belly that I won't even give anybody a chance. Mind you, I have a plethora of fellas chasing me lol. I'm worried about the rejection I'd potentially get if they did see it and didn't want to deal with it. I'm even worried about going to the beach where there will be a bunch of ppl Id NEVER see again in my life, who will see me all taped and tubed up..ugh! I hope someone eventually breaks those walls down and accepts me. I'm a great soul and even more wonderful person. It sucks being the pretty and sick girl.”

Concerns After Initiating PD

Once people have experience with PD, do their views of their sexuality improve? Maybe. Some are able to come to terms with their changed bodies and lives, while others continue to struggle:

• “I made a point of having sex prior to getting my catheta put in. We haven't since (a few months) as it takes a while to stabilise, but now I think I could and should start back in initiating intimacy. I think it's good for the person with the catheter to initiate, as our partners can be a bit nervous. I was thinking when I've got a tag [Tegaderm®] on for a bath would be good as it's all taped up and won't get in the way.”



• “Trust me…guys do not care about your belly and your tube. Alot of them get turned on by it because its something different You could always role play and have them wear a dr coat and you are the patient...just giving ideas for when it comes up ”

• “Message for the ladies: 90% of men will not care one bit about your catheter. Don't let that thing get into your head. Men will still want you. Get out there ladies. Live your lives!”

• “My wife hasn't slept in the same room with me since I started dialysis. No intimacy, at all, since the catheter was installed. She won't talk about it either. Not something I want to talk to my doctor's/nurse's about tbh. I'm type 1 diabetic and it's caused some ED issues sporadically over the years, but it never impacted us before. This is really the one life-change that's threatened depression for me. The rest of this crap I can deal with, but losing my relationship of 15 years has been hard. ”

• “The struggle is real. I don't want to be alone because of something I have no control over. I've only been on PD for about a week, so maybe it'll just take some time for acceptance for me.”

• “I used to have a high sex drive. But now its just gone. I try but its just uncomfortable anymore. Idk if its dialysis or all the BP meds I am on. We are intimate and affectionate in other ways and I will do it just because, but if I am truthful I just dont enjoy it anymore. Its hard. This stuff is life changing.”



• “It takes time. I have gained weight and hate my new body shape. Its been difficult especially when shopping for clothes. I wear a lot of dresses. I went shopping not too long ago and was in dressing room and I had some maternity leggings on (great by the way!!) and I happen to notice I have a booty now lol…one good thing out of the weight gain hahaha…”

• “I do get embarrassed about how my stomach looks, but they make some pretty awesome teddies to cover them.”

• “For me I just try to dress with some style maybe stand out a little. You just need to own that sh*t. Just wear things that make you feel good. I have a found a few things that are comfortable and still look stylish. When you are ready to date, dont be scared. A lot of men are understanding in these situations and really enjoy taking care of a woman. Dont miss out on happiness because of a belly and tube. Use it as a marketing ploy. You wanna get freaky with a girl on dialysis? Lol…just being funny ”

• “I think it's a little different for men than women. My husband and I always had a great sex life. It was fine the first 7-8 months on PD then he lost the ability/desire (ED). It was very difficult for him at first to talk about it. It's something he never had an issue with before dialysis/ESRD. Now we've come to terms with it and I try not to make him more self conscious about it than he already is. It's been such a journey that I'm just happy for him feeling well and seeing good numbers. He's working towards transplant and I hope that will correct things. ”

Logistics of Sex on PD

Is it safe for people on PD to have sex? Can they be full of PD fluid? How do they keep the catheter from being pulled on or damaged? Yes, people who do PD can have sex safely—and they need you to tell them so. Some sensible precautions can be taken to protect the catheter:

• “It's nerve wrecking esp being with someone new who don't even know. I think some of us are more afraid of the unknown. We go into hiding. I don't even know if it's safe.”

• “I just make sure to do a drain so I am not full. Getting naughty whilst full is hard for me to move.”



• “My bf had his catheter placed 3 1/2 weeks ago. We have been intimate 3x already with no issues. I also asked his pd training nurse if there was any chance of causing harm to the internal part of the catheter and she said no.”

• “I tape mine up and my husband and I have no issues, I was very self conscious about it at first, you know, you don't feel sexy with a tube in you, but my husband see it as a part of me and makes me feel even more sexy...bless my hubby...”

• “I make an effort to keep our sex life going. It's a bit difficult because I don't want to have sex when filled, so we make a point of doing it before I connect at night. That takes all the spontaneity out of it, which is difficult. But we make an effort, as it's important to both of us.”

• “I struggle with because I am still on manuals 4 times a day. There isnt a time I am not full. It sucks. Sometimes I drain and then fill with another bag later.”

• “Do whatever feels good to you, and whatever position you like. Try them out and see how it goes. This disease robs you of so many things. Do what makes you happy for as long as you are able.”

• “I was nervous too and wanted nothing to change. I prefer to have it when I am not hooked up. But that's just my personal preference. I also wear a pregnancy lap band that keeps it [catheter] in place so that I am not worried about it.”

• “My husband's on pd, we have no sex life now. Because of his ED, we could only have sex one position, missionary, and he can't now because it pulls on his line. We've never been this long without intimacy and idk how our marriage will survive it.”

• “We are in the same boat and now have separate bedrooms. It's rough. Not being crass but how about oral, toys, strap ons for him, manual sex, humping like you did in high school? Sex life with ED and PD is only limited by your imagination. Where there is a will there is a way.”



• “I've been on Pd for 2 years. My site is quite low. I discovered a stash band, typically used for a running wallet. Make sure you get a tight size. I put it on to secure my site, then tuck the transfer set into the pocket. Good to go. Makes it trickier to have spontaneous sex unless you're the one initiating. They come in fun colors, too.”

• “I've been using a sleeveless compression shirt and that works pretty good to hold everything in place. As for intimacy, the meds and other medical issues are more impactful than the PD cath.”

• “It never affected my bedroom shenanigans. 8 years on pd and every position known to man; you're not stuck with the missionary position. I was uncomfortable about my partner seeing the tubing, but I was more weirded out about it than he was. He didn't have a problem with it.”

Conclusion

Intimacy is the glue that holds a relationship together. Peritoneal dialysis does not have to be an obstacle to intimacy, sexual or otherwise—but it can be. Talk to your patients. Ask them how they are doing in the various aspects of their lives: work, hobbies, friendships, partner relationships. See if they need answers or support to live as well as they can with PD.