I Have a Heart Condition That Changes Everything About How I Have SexApril 12, 2021
A surprising amount of sex hinges on blood circulation. Blood flow directly fuels erections, vaginal lubrication, and other physical aspects of sexual arousal; it can also dictate a person’s energy levels during sex. Poor circulation can cause joint and muscle pain and dizziness, which may make certain positions or levels of sexual intensity uncomfortable.
Though heart conditions aren’t often immediately associated with sexual symptoms, many people report sexual complications that result from their heart issues. Depending on a given heart issue’s exact nature and severity, it can affect diverse aspects of sex. In extreme cases, people may need to avoid sex wholesale because the exertion of the activity can put them at risk of serious pain, or, in very rare cases, even lead to a heart attack.
While effective treatment and a generally heart-healthy lifestyle can mitigate the sexual side effects of heart conditions, some can be frustratingly persistent. These enduring effects may stem from something hard to address, like permanent heart or blood vessel damage. They could also be rooted in the psychological effects of heart conditions, like anxiety about triggering pain or a heart attack through exertion, or changes in self-image caused by the side effects of conditions or treatments. Medications used to control heart issues can lead to sexual problems, as well—or complicate efforts to treat them.
Heart health organizations have created resources for people to learn, in broad strokes, about the sexual symptoms associated with cardiac issues. However, given the diversity of heart conditions and the sexual concerns they cause, these resources may not help someone pin down exactly what’s going on with them. In practice, many people are left with little guidance about the sexual effects of their conditions and how to manage them: Few medical experts speak with patients about the sexual side of their conditions in any meaningful detail, and numerous people with heart conditions also told VICE that sex isn’t discussed in depth in many heart health support groups, either.
VICE reached out to Lisa, who has hypertrophic cardiomyopathy (HCM)—a condition that causes parts of the heart to grow too thick, which affects its ability to pump blood and causes arrhythmias, chest pain, shortness of breath, and sometimes fainting during exertion. She and her partner, Michael, told us about how her condition impacts their sex life.
This interview has been edited for length and clarity. Lisa and Michael’s last names have been withheld to protect their privacy.
Lisa: In middle school, I wasn’t able to run in gym class without shortness of breath, lightheadedness, or a lot of chest pressure and pain. My mom took me to the doctor, who misdiagnosed me with exercise-induced asthma (a common misdiagnosis for people with HCM). In my late 20s, I went on a diet and passed out at work. I got sent to the hospital for 10 days. They found my HCM on a scan and said, “Yeah, you should have been getting monitored for a long time already.”
Michael: You actually got diagnosed earlier than that, when you went into your regular doctor for a routine scan and they found an issue with your heart, but just didn’t follow up on it.
Lisa: Right. Two years earlier, my doctor heard a murmur in my heart and sent me in for tests, but when the results came back, she told me it wasn’t a big deal without telling me specifically what they’d found. I just trusted her. Years later, I looked at my medical records and found out that the tests actually indicated I had HCM and that doctor blew it off as nothing to worry about.
Michael: We’ve been together since we were teenagers, but for most of our relationship, I only noticed Lisa’s symptoms when she pointed out that she was having trouble breathing. Early on, that didn’t have a big effect on our relationship.
Lisa: I would have bad days when my shortness of breath was a real issue. But I was still pretty active; my symptoms didn’t control my life. During sex, though, Michael has always had to do most of the work, because we both know that if I have to get into a position where I’m exerting myself, I won’t be able to go on for very long before I get too short of breath to keep going.
Michael: That was just a minor inconvenience. She’d let me know when it was an issue, and we’d have little conversations about it in the moment and make adjustments if we needed to.
Lisa: Honestly, sometimes I’d ignore what I was feeling and push through my pain or shortness of breath because I didn’t want to ruin the moment for either of us.
A year after my diagnosis, after a pregnancy, my symptoms started to get worse. (Experts are still researching what effects pregnancy has on HCM, but, from my experience, it seemed like there was a pretty direct effect.) My energy levels went down. My heart palpitations got a lot more frequent. I was short of breath more often. It was clear that something big was happening. I started to feel more anxious about dying and leaving Michael with kids to raise on his own, and that had a big effect on our relationship overall.
Michael: I noticed that Lisa was feeling anxious and having more symptoms pretty quickly.
Lisa: A couple of years after that pregnancy, my cardiologist suggested I get a myectomy, [an operation to remove a thickened part of the heart]. I felt good for about a year after that. But then things went downhill. I had to start taking more medications to control my condition—I’m currently on antidepressants, beta blockers, and diuretics—and those came with a total loss of libido. I still had sexual interest in Michael, but I didn’t have any sex drive at all. It’s been an issue for about seven years now.
Michael: Over the last three or four years is when it became a big issue—your weight loss surgery seemed to make things worse.
Lisa: I got that surgery because I needed to lighten the pressure on my heart to help with my HCM. But I lost weight so quickly that I was malnourished, and that affects your brain. I also didn’t address the underlying eating disorder that led me to gain weight initially. That had a huge effect on my mental health—and on my libido as a result.
Michael: I think it also affected the way your body absorbs your medication, which hasn’t been good for the side effects. Before all of this, we had sex as often as possible.
Lisa: [Laughs.] Yeah, maybe four or five times a week—whenever we had time. Now, we only have sex maybe four times a month. Maybe.
Michael: It’s been aggravating when she’s not able to have sex. I know that’s true for both of us. But we have to just deal with it the best we can.
Lisa: I still make sure that we cuddle at night, which is the only time when we’re both reliably alone together. But the lack of sex has put a strain on our physical intimacy.
In the last six months, my chest pain has gotten so much worse. Now, when I orgasm it feels like somebody’s sitting on my chest. I get dizzy and cry, because it hurts so bad. And, you know… that totally ruins the moment! Then I’m in pain all day.
Michael: [This latest change to our sex life] was a huge jump from OK to, like, Not OK, shit. Suddenly, she was screaming in pain during sex. Her doctors don’t seem to even know why she’s suddenly having so much pain, or how to address it. Just knowing the cause would be awesome.
Lisa: I think I understand the basic mechanics of what’s going on: My HCM has by now progressed to the stage of chronic heart failure, [in which the heart doesn’t pump blood as well as the body needs it to]. That causes a lot of fluid buildup issues around my body, which affects my breathing and energy levels. The tests my doctors have done show that, when my heartbeat rises when I’m exercising, the fluid pressure in my body goes way up. Obviously, when I orgasm, my heart rate goes way up, too, so that likely causes my pain. The usual solution to this would be nitroglycerine. However, that medication is not compatible with my HCM. If I just had HCM, or just had heart failure, my doctors might be able to offer me a solution. But having both eliminates the obvious treatment options. I’ve talked to my doctor about this issue. But it’s not something that he, or anyone, really wants to talk about.
Michael and I have figured out that direct clitoral stimulation causes more of an issue [for me]. If I have a smaller orgasm through penetrative rather than oral sex, the pain is usually tolerable. And if I don’t have an orgasm at all, everything’s usually OK. But that’s not really pleasurable for me; it’s no fun to get all worked up and then not be able to do anything to release that energy because I know it’ll hurt so bad if I do. It leaves me frustrated. It’s not the sex that I want to be having. But while I don’t want to feel the pain, I also don’t want to stop having sex—that closeness—with Michael.
There might be a combination of activities that make sex work for both of us, but we haven’t found it yet, in part because we just don’t have as much time together alone to experiment as we might have had earlier in our lives. We have our kids and, you know, just life distracting us.
Michael: The only thing I’ve been able to come up with that might help us is this: Lisa gets daily reports [via a monitoring device] on her fluid buildup levels. So, maybe we can try to have sex on days when she has less fluid buildup to see if that makes a difference.
Lisa: Sometimes I don’t get those numbers at a convenient time. Even on days when I feel like I have less fluid buildup and we have sex, I still do feel some chest pain. It’s been hard to find support to find other potential solutions, partially because Michael is not very comfortable talking about our sex life with people who we don’t know extremely well.
Michael: I actually really didn’t want to do this interview at first! [Laughs.] It’s just weird talking to a stranger about this. But we decided it’s important to share this experience.
Lisa: Even getting input from other people in support groups has been hard. On the Hypertrophic Cardiomyopathy Association’s Facebook page, [one of the few major hubs for information and discussion on the HCM,] people bring up sex every few months—but never in detail. It’s just like: “Is everyone having a hard time with their sex lives?” Some people say “yes” or “no,” and that’s it. It’s basically, You are not alone, but no one has real answers or insights. Everyone is very self-censored in what they say, even when you ask them to privately message on the topic.
I’m not sure what the next step is for us. It’s a constant effort to maintain our intimacy in some form now. It helps that we’ve been together for so long.
Michael: We can’t really plan too far ahead, because we don’t know what’s going to happen with the condition and we haven’t figured out how to address it. But will this be a relationship-ender for us? No. Like Lisa says, we just have to take it one day at a time.