The disease, which involves tissue similar to the interior lining of the uterus growing outside of the womb, affects up to 10 percent of all people who are capable of bearing children. (Most often, the tissue develops on the outer surface of the uterus, fallopian tubes, ovaries or elsewhere in the pelvic cavity, but it can affect other parts of the body, too.) When people with endometriosis get their periods, this displaced tissue breaks down and bleeds but gets trapped inside the body. The tissue ends up irritating whatever it’s growing on, which can be excruciating.
Endometriosis doesn’t just cause pain during menstruation. Every episode of internal bleeding can create lasting cysts, lesions, scars, or adhesions. Many activities, including sex, can aggravate these internal wounds at any time. In fact, about two-thirds of all people with endometriosis say they’ve experienced serious pain during or after intercourse. The nature and extent of this pain varies due to the location and scale of irritation, scars, and other physical and psychological factors. Some people report mild aches, while others describe experiences so agonizing that they temporarily disconnect from their bodies. Some people only feel pain during penetrative sex, but for others, it may start during sex then last up to several days afterward.
No one knows how to cure endometriosis, but the right blend of treatment and management can reduce—if not, in some cases, largely eliminate—the sexual pain associated with it. Unfortunately, doctors often dismiss women’s reports of pain or mistake symptoms for another disease, so it usually takes years for people to find professional help. Even when they do, the variability of the condition means it can take ages to find the right mixture of treatments, and the disease’s tendency to spread and shift means that solutions may not be permanent. And many doctors don’t even consider people's sexual experiences when developing their treatment plans.
A handful of organizations have started publishing guides to help people with endometriosis find medical support and figure out how to best manage the condition’s effects on their sex lives, but few have shared personal stories of sex with endometriosis. To help address this gap, VICE spoke to Claire Watson, a woman with endometriosis who runs a support group, and her longtime partner, Scott Watson, about the role the condition plays in their sex life and how they handle it.
This interview has been edited for length and clarity.
Claire: When I was about 15 years old, I noticed that my periods didn’t seem normal. They were never overly heavy, but they were painful and irregular. I could go a month without having one, then have three or four within a month. When I got older and started having sex, that caused me a lot of pain, too.
The pain can be anything from stabbing to throbbing to deep and internal. Sometimes sex is painful in the moment, but then I’m fine afterwards. Sometimes, I’ll end up curled up in a ball in pain for the next three days. It’s almost never the exact same thing two times in a row.
For 16 years, I went to various doctors who all told me that nothing was wrong with me. They told me I just had depression, or that I was clearly just trying to get medications. When I got the courage to bring up sex specifically, my general practitioner told me it was normal to feel some pain and sent me on my way. After hearing all of that enough times, I thought, Well, maybe I am just depressed. Maybe I just have a low pain threshold. I thought that painful sex was the norm, and I had to push through it.
Scott: When we first got together, I think Claire hid a lot of the pain she felt when we had sex.
Claire: Yeah, I did. Especially because I thought that if I told Scott about my pain but didn’t have any answers to explain it, he might think I was making it all up. Then, two months into our relationship, I went off the pill for the first time, and I got seriously ill. I was hospitalized and got a laparoscopy, which led to my diagnosis with endometriosis. I’d never even heard that word before.
Scott: Neither had I. At first we were both going, Yay, we have a name for this thing that Claire’s dealing with now. There’ll be a pill or injection or whatever to address this issue. Now we can get on with developing our relationship. Once we went home and started doing our research on endometriosis, we both went, Oh, this isn’t going to be an easy road.
Claire: When I started to confront endometriosis, I tried to push Scott away. I told him that he didn’t sign up for this. Internally, I felt like a failure as a partner because I wasn’t able to have sex all that often because I knew there would likely be pain.
“For 16 years, I went to various doctors who all told me that nothing was wrong with me. They told me I just had depression, or that I was clearly just trying to get medications.”
Scott: She’d tell me, “Go find somebody else, who you can have sex with.” But when you’re falling in love with someone, you just want to try to help end the pain for them. So I wanted to find ways of making things work, in our sex life and in general, for both of us.
Claire: After months of Scott telling me, “No, Claire, you are enough, and sex isn’t everything,” I realized that pushing him away wasn’t helping either of us, and we needed to talk openly about our sex life. I think the fact that Scott’s lived with chronic illnesses and pain for much of his life helped us have those conversations. Still, it did take us a little while to start finding good ways to communicate with each other about sex and to find solutions. We had to get used to being open during and after sex about things like, OK, this position didn’t work out but this other one did, so let’s try more of that one in the future.
But because endometriosis can be so unpredictable, sometimes we’ll try a position that usually gives me pain, and, that time, it doesn’t. At other times, we’ll go into a position that’s been working for us, and suddenly I’m in pain. It’s really frustrating, honestly. However, one of the main things I’ve realized is that positions where I have more control of everything during penetrative sex help me limit my pain by only doing what’s comfortable for me at any moment.
Scott: Claire’s usually on top. In any position, I step back and let her drive the car. On my end, I had to work through knowing that having sex with Claire meant that I was probably going to hurt her, that she might be in bed in pain for the next week, and that I’ll blame myself for her pain. But sometimes Claire has made up her mind that she wants to have penetrative sex on a certain night. When she’s decided that, I need to not put on a play act or a mask like I’m OK with causing her pain when I’m not, but instead to put my concerns and guilt on hold for a while—set them to the side so we can have sex we both want.
Claire: Most of the time, I feel like the pain is worth the pleasure and the closeness that comes with sex. Sex isn’t everything, but it’s a big part of how we connect as a couple. I also have a lot of tools for reducing my pain, like using heat therapy and weighted blankets, doing yoga to help myself relax, even just learning to let myself lie down and de-stress for a minute. But sometimes I do feel like, Oof, the sex we just had wasn’t worth the pain. Usually when that happens, I just tell Scott about it and we decide to take a break—to lay off sex for a week or so.
Scott: Claire’s endometriosis and pain are always in my mind. If I know Claire wants to have sex but that she’s also been in pain recently, I’m thinking, OK, this means I shouldn’t go too hard, too deep, or too fast now. But I try not to let that awareness ruin the moment. We do occasionally experiment with going harder or faster than usual, though.
Claire: Yeah, usually we do that when I haven’t been in as much pain in general, or under much stress, recently. But I always pay for it afterwards. We’ve been together long enough that Scott’s become very good at reading my body language, so when I feel internal pain now, he can usually notice me move or otherwise react a bit. Then he’ll pull back slightly or we’ll pause our sex for a moment so that we can switch positions or switch up the kind of sex we’re having altogether.
“Most of the time, I feel like the pain is worth the pleasure and the closeness that comes with sex. Sex isn’t everything, but it’s a big part of how we connect as a couple.”
Scott: We’ve learned to accept that, even if we’ve both been thinking about having penetrative sex, for example, and been building up to it all day, if we need to switch to oral sex or mutual masturbation, or whatever it may be, hey, that’s OK. We don’t need to have penetrative sex to have the sense of closeness that we’re both seeking—although even non-penetrative sex doesn’t mean there’s no risk of pain, because the muscle contractions of any orgasm can trigger it, too.
Claire: Yeah… orgasms can be the cause of pain.
Scott: Even after years, we’re still figuring out how endometriosis affects our sex lives and how to talk about it with each other. There are times we realize we haven’t been communicating enough during sex, so we need to pause sex, remember what we’ve talked about in the past and expand on it, then start having sex over again.
Claire: I’m personally still struggling to accept the fact that we can’t just do anything we want to do during sex. We can rarely go fully into the moment because of that, which is difficult.
Scott: But if there’s one main thing we’ve learned and internalized, it’s to talk.
Claire: Yeah, just talk to each other. Be honest and talk as soon as you can about everything, because things fester if left alone for too long.
Scott: We’ve also learned not to beat ourselves up if we can’t do certain things or struggle to figure out how to make something work.
Claire: Overall, though, I think we currently have a healthy sex life—to the best of our abilities.
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