Irritable bowel syndrome (IBS) is a chronic condition that affects the large intestine. It typically causes abdominal cramping and pain, bloating and gassiness, and either constipation, diarrhea, or a mixture of both types of bowel movement. But many people with IBS—at least 10 percent of all people—have relatively mild symptoms that are easy to mitigate with at-home remedies or over the counter drugs, the same sort of things you’d use for run-of-the-mill stomach issues. Because it doesn’t seem like a big deal in most cases, and because it concerns bathroom stuff, people who don’t have IBS usually only hear or think about the condition as a pop cultural punchline.
But a fair number of people with IBS experience severe versions of these symptoms. Their pain can interfere with their ability to focus, or functionally incapacitate them for hours, even days, on end. They may even feel the need to structure their lives around ready access to a toilet.
Unsurprisingly, many people with IBS report that these symptoms, as well as the anxiety or embarrassment they experience surrounding them, seriously affect their sex lives. Bloating and gas can make people feel undesirable. Pain and fears about suddenly needing to go to the toilet can make it hard for people to feel sexual or to focus during sex. Penetration—anal or vaginal—can exacerbate deep intestinal pain because of the direct pressure it puts on a recipient’s digestive tract, as well as the muscular contractions it provokes. In some cases, sex—even non-penetrative sex that gets muscles moving and blood flowing in the lower abdomen—can even spark flare-ups in people who were feeling fine beforehand. Because stress of any sort can trigger or aggravate episodes of IBS, if people start to feel stressed about the way the condition affects their sex lives, that can make things even worse for them as well.
Some research suggests that people with IBS experience substantially more sexual dysfunction and dissatisfaction as their peers without the condition. Many people with IBS say that they avoid sex occasionally or altogether because of the realities of, or concerns about, their symptoms.
These issues are often difficult to cope with, in part because cultural hang-ups about discussing digestive health (i.e., talking about shit) makes it hard for many people to tell their partners what they’re going through, or even to seek medical attention. IBS symptoms are so wide-ranging, and so often overlap with other conditions, that doctors can struggle to make fast, firm diagnoses. Many people with IBS also say that when they do get a diagnosis, their doctors do not take their pain and distress seriously enough, and so do not offer sufficient support. There’s also still a lot that we don’t understand about IBS—like what causes it, why it’s more prevalent in women than men, and why some people have idiosyncratic or unpredictable symptoms. These unknowns make it hard for even the most knowledgeable and supportive doctors to help some people figure out how to control their IBS through lifestyle changes, stress management, or medication.
In recent years, a number of IBS groups have started to foster conversations about the interplay between the condition and sex and sexuality. Through them, people with IBS often share tips on how to manage their symptoms and maintain satisfying sex lives. To add to this discourse, VICE recently spoke to Helen, who has IBS, and her partner Zack about how they navigate sex.
This interview has been edited for length and clarity. Helen and Zack’s names have been changed to protect their privacy.
Helen: I started to have stomach pain problems when I was 13 or 14. My doctors weren’t sure what it was. They thought it might be endometriosis. Then the pain went away for a long time, but it came back when I was 22. It varied between a stabbing and a burning sensation in my lower abdomen. I ignored it at first, but when I started my first full-time job at 23, my symptoms got worse, and I started to experience frequent constipation and bloating. Sometimes I only feel the pain in the mornings, maybe three days a week. Sometimes it’s on-and-off all day, four or five days a week. I’m not usually hunched over in bed, but it can be hard to sit at my desk and focus.
I went to another doctor looking for solutions, and that’s when I started hearing about IBS. I thought, OK, cool, there will be ways to treat this. I was almost relieved to be able to try new solutions. But I soon learned that it can be really hard to find what works for each person, because IBS is really a catch-all term for a bunch of digestive issues—it’s not like you can take this medication, follow this diet, and you’re fine. I’m still trying to figure out what triggers my flare-ups and what makes them better or worse. I’m still trying new diets, supplements, and prescriptions.
I got together with Zack around the same time that I started learning about all of this.
Zack: I didn’t know much about IBS before getting together with Helen, except that it causes digestive problems and there can be pain associated with that. I had no idea about the duration of the physical effects, or how they can affect someone’s mental health or overall well-being.
Helen: My IBS didn’t cause problems for me during sex at first. And I didn’t tell Zack about my condition explicitly early on in our relationship. I’d just say, “Oh, my stomach’s hurting today,” without going into any specifics. I was still figuring out what IBS meant for my life. I still thought it was something I’d be able to solve soon, so I wouldn’t need to tell anybody else, even to have an understanding shoulder to cry on when things were bad. Also, at the end of the day, IBS has to do with your bowel movements, which are a really private thing, especially early in a relationship. I was uncomfortable going into the details of what was up with that.
Zack: We both like aggressive sex. Nothing too wild, but we’re not vanilla. We’d do a bit of bondage, a bit of power play with me in the dominant role. So, it was vigorous, rough sex.
Helen: Whenever we’d meet up—we live about an hour and a half away from each other—we’d have sex at least once a day, sometimes more. Sex was a big, great part of our relationship.
Zack: When we were first dating, whenever Helen said she wasn’t feeling well, whatever she needed, like if she wouldn’t be up for sex, was fine with me. But as we got closer, I noticed she was in pain a lot. We started talking about that, although not necessarily in graphic detail.
Helen: This was probably about a year into our relationship. Zack started encouraging me to look into my pain more, to go to another doctor. His interest in being involved made me feel more inclined to get into the specifics of what was going on. After a while, I started to realize that this was something that would affect me for the long term. It was on my mind all the time. I didn’t want to go through it alone anymore.
Zack: I’ve never had a problem talking about things like bowel movements with the people I’m comfortable with. And Helen and I had actually known each other since we were 18. I didn’t find it hard to start talking about Helen’s IBS more openly. I actually started prying a lot more to figure out the details of what was going on, and to start picking up on more nonverbal cues.
Helen: About a year and a half to two years ago, my symptoms started getting worse. I think that might be related to stress, because there’s more of that in my life now than there was in my early 20s, but I don’t know for sure. Whatever the case, I started feeling pain during penetration—a sharp, stabbing pain deep in my body, in the area around my large intestine. I didn’t know that could be a symptom of IBS, and I wasn’t prepared for it. It was bad enough that I had stomach pain all the time. So, when the pain started to affect our sex—I didn’t love that.
Zack: Helen didn’t tell me she’d started feeling pain during sex [even though we'd started talking more openly about her IBS and pain more generally]. But it’s usually obvious when the person you’ve been having sex with suddenly doesn’t seem to be into it. I’d lean down and ask, “What’s going on? Do you want to take a break?” Usually, we would. Maybe we’d try again a bit later in the day. But not knowing what was going on was hard for me.
Helen: I was silent about my pain because I didn’t think it was a big deal. I thought I was having a rough couple of weeks. Then it became an issue every time we had sex, and I was just sad that it was happening: We like the sex that we like, then, because of my health, that might have to change for both of us. It was frustrating. I was having thoughts like, What if we can never go back to our normal sex lives? What if there’s no solution and I always experience pain during sex? I felt insecure; there were a lot of negative emotions on my side. I guess I also stayed silent because I didn’t want to acknowledge that this was becoming a pattern—that it was a thing in our lives.
Because I didn’t want to disappoint Zack… this doesn’t sound great, but I’d think, I can suffer through this. Sometimes, it’d only hurt for a while, so I’d convince myself I could wait the pain out. But he’d notice that I was focusing on something other than our sex.
Zack: I was like, “Hey, you’re not going to disappoint me if something’s changing here. And sex is obviously not fun for me when I can tell you’re in pain.”
Helen: Eventually, we did talk about it, and I felt better knowing that I have a supportive partner who was OK with taking time to try to find a solution to whatever was going on.
Zack: We spent a few weeks trying to figure out what caused it—and usually failing. But if [having sex] didn’t work one day, we’d take the time to lay there and cuddle and talk and make sure we were both OK.
Helen: At first, I didn’t even want to try. Like, we’d want to have sex, then I’d feel pain and have to stop and I’d be in a bad mood afterwards. But we learned to communicate more often and openly during sex than we ever had before. Now, if I feel the pain starting, I can just grab his leg and it’s a clear signal for him to stop, check in, and change things up.
Zack: We’ve had to slow down our sex and get less rough overall. Some days we’ll try one position, and it won’t work. Then, the next day, we’ll try the same thing and it’s fine. If we’re having a day without pain, I also often worry about doing anything that might accidentally suddenly introduce pain.
Helen: Because I’m still figuring out how IBS works for me, I can’t predict what will set it off. Sometimes I think I’ll feel pain during sex, and I don’t. Sometimes I think I’m going to be fine, then I’m in terrible pain. Sometimes, all I can do is the missionary position. Other times, that position puts me in the worst pain out of any. We just have to figure out what works each time. Knowing that we can communicate and experiment as things are happening during sex has been my stability, rather than knowing exactly what’s going to happen with my body.
Zack: We have learned that anxiety exacerbates any pain, and that foreplay helps to take her mind off of that anxiety. Everyone loves foreplay, but elongating it as much as possible helps.
Helen: We also like doggy style, and I’ve learned that if I start the movement in that position, I can control the pace to gauge my comfort level and whether or not I’m going to experience any pain. If he starts out in control, he can’t know if my pain is just starting, or what exactly is making it worse, so he might try something and suddenly I’m in horrible pain. If I can set an initial comfort level of speed and intensity, that really helps. Between that, more foreplay, and open communication, we’ve recently been able to starting having somewhat rougher sex again. When we can’t, that’s fine, because I know my body’s just not having it on that day.
Zack: Before, if Helen started feeling pain, everything would stop. But nowadays, we don’t have to stop everything every time. We can still touch, masturbate, or have oral sex.
Helen: Sometimes, if we do more oral or other things for a while, my pain will go down a bit and we can eventually go back to penetration. Things are a lot better than they used to be.
But I still have mental hurdles. Like, if I have sex and I feel OK, but then afterwards I end up hunched over in bed in pain that I didn’t expect, it just makes me feel anxious about sex again.
Zack: We’re learning about each other sexually as we go, and about what does and doesn’t work with IBS. But, in the long term, this experience only made us communicate better.
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