"My problem is really ruining our marriage," said Kiera, 38, a freelance website designer who has been married for 10 years. "I've had endometriosis since I was 14. Every month, for the week or two before I get my period, I'm throwing up, then I start bleeding heavily and I double over with pain. And sex really hurts, even on my good days.
"Several boyfriends broke up with me because of the disease. My husband, Ryan, was different. Maybe he was more sensitive since he helped take care of four younger sisters. And when we met he was raising his son, Jon, by himself. That tells you a lot about a person. But over the last few years he has bailed on me and it seems like he's bailing on Jon, too."
"Ryan's been coming home late from work and he always seems to be in a weird, dark mood. I think he might be having an affair. And if he was, I almost wouldn't blame him. Who wants to live in a sexless marriage? But the only thing that's ever made intercourse comfortable for me was when I had surgery to remove the scar tissue that the endometriosis creates. I've had two operations already — one in college and another when I was 26 — and I'm going to have another soon. But it's only a temporary solution, in my case, because the scar tissue grows back and the pain returns. This disease doesn't just screw up our sex life — it may mean that Ryan and I can never have kids.
"When we got married I was having a lot of PMS pain, but sex didn't hurt as much as it does now. And I was able to do a lot more, in general. We went mountain biking on our honeymoon, but lately I'm in so much pain I can't even bike around the neighborhood. As my pain has gotten worse, Ryan and I have started doing things separately. During the week, since he's often at work, I'm doing the cooking and cleaning and being the disciplinarian with Jon. Then Ryan gets to swoop in and be the fun parent on the weekend, doing the active stuff I'm no longer able to do. It's not fair.
"Parenting is a huge issue for us. We've never been on the same page and now that Jon's older — he's 12 — we argue a lot. Recently, he's been blowing off homework and his grades have dropped. And if he's not online, he's on his cell phone. I've told Ryan that I need him to be around more for Jon and for me, and he says he will but he never follows through. Last week he actually refused to come to a parent-teacher conference. And it's his child!
"But last month something happened that I just can't forgive. Ryan and I went out for dinner to celebrate my birthday. It was a perfect evening and I started to think that maybe we could find a way to be close again. Then in the middle of the night, I went downstairs for a glass of water and saw his laptop on the kitchen counter. He'd left it open — to a porn site.
"That was it for me. I'm done. I want him out of the house and out of my life. Being by myself can't be any harder than living like this."
"How can Kiera say I'm not there for her?" said Ryan, 44, an analyst for an investment bank. "Even before we were married I went to her doctors' appointments and spent hours online trying to find a solution to her endometriosis. And even now it's not like I've gone AWOL. But lately, whenever I try to be playful or affectionate, Kiera gets this pissed-off look and makes it clear she doesn't want to be touched. It's pretty depressing. I've found it's better just to make myself scarce. So I tell her I have to stay late at work. I'm not having an affair. I thought she'd be mad if I told her I'd been at a bar. She's mad about so many things these days, it's hard to know what will set her off.
"When we first met, Kiera and I had sex all the time. It was amazing. She was full of energy and liked doing all the things I love to do — skiing, biking, hiking. This disease has taken her away from me in so many ways. For half of every month I don't have a wife. That makes me incredibly sad but I resent her accusation that I'm not pulling my weight as a parent. Maybe some dads can take off in the middle of the day for a teacher conference, but my boss wouldn't like it. In this economy I can't afford to look like I'm not totally invested in my work.
"Kiera also thinks she's the only one who knows how to be a parent. When I'm not being the kind of dad she wants me to be, it's because I disagree with her, not because I'm avoiding responsibility. She wants me to hover over Jon so he finishes his work. But in my opinion, micromanaging isn't going to light a fire under him. He has to learn to be responsible for himself, and if he flunks a test or has to go to summer school, so be it. That'll teach him a lesson the way nagging won't.
"We definitely have our issues. But this 'no sex' thing is getting to be a deal breaker. Sex isn't the only thing in a marriage — but it's an important part. I feel really bad that I left that website up, but in a way, it's a relief. Something has to change."
The Counselor's Turn
"Sex can be the glue that holds a couple together even in the middle of a crisis," said the counselor. "If the sex works, good feelings spill over into the rest of the marriage, making communication and problem solving easier. But Kiera and Ryan did not have that kind of intimacy. And anyone who lives with chronic pain understands what it does to your mood and the major toll it can take on your sexual desire.
"Kiera's pain was behind a lot of the couple's problems. Over the years, as her pain got worse — which is common with this disease — Kiera started having a lot less energy and a shorter fuse. It became harder and harder for Ryan to feel loved when he was being criticized so often and getting so little affection. He coped by pulling away, and then Kiera assumed that meant he didn't love her and was cheating.
"The first thing I focused on was getting them to speak to each other more openly and lovingly outside the bedroom. 'That's generally where lovemaking starts,' I explained. 'Partners are more likely to have a good sex life when they feel safe and accepted. You can't if you're always dodging attacks or choking back hurt feelings.'
"I gave them a four-part structure to use for conversations on any hot topics. Start with your feelings, I told them, without being accusatory. Then explain why an issue is a concern for you. Third, say what you'd like to do about it. Finally, let your partner weigh in. Kiera and Ryan both thought this structured way of talking would be very awkward, but once they forced themselves to use it they found it helped them clarify points and share insights, and it ended their getting into fights.
"When Ryan was 12 his father left the family and Ryan took on the 'dad' role with his siblings. Since he was trying to be strong for his family, Ryan developed the habit of swallowing his feelings and withdrawing from conflict. But with this safer, more structured communication style, Ryan was more comfortable saying what was on his mind. 'We're actually talking with instead of at each other,' Kiera said. As a result they came to an agreement on how to handle Jon's homework rebellion, and Ryan got more engaged in coparenting and in the marriage in general.
"I pointed out that this kind of respectful communication is especially important when your sex life is challenged by chronic pain. 'You can get that piece of your life back,' I assured them, 'but in order to do that, you need to be patient with yourselves and with each other, and you have to be very careful about how you talk about the issue, so that you don't inadvertently hurt each other's feelings or end up getting bogged down by misunderstandings while you're trying to find solutions.'
"Using the same conversation starters, they discussed times of the month when sex was less painful for Kiera. When Ryan suggested experimenting with lubricants, she agreed. And they both decided to concentrate more on foreplay and to try other ways of achieving orgasm, not just intercourse.
"Sharing their feelings and getting their sex life back eased the tension between Kiera and Ryan and they began to enjoy simply being together again. She had no reason to suspect that he was involved with other women. He became much less interested in porn sites since he and Kiera were having sex. Ryan started spending more weeknights with his family and they now plan fun weekend activities that Kiera can take part in without pain. We completed treatment after three months, though Kiera and Ryan know I'm available if problems come up. Best of all, two months ago, Kiera had another laparoscopy to remove scar tissue and, last week, she called to announce that she was pregnant.
"Kiera knows her endometriosis pain will flare up again after she gives birth, but for now she and Ryan are both thrilled and confident that, with their new communication skills, they can get through anything together."