Beyond pelvic pain and heavy periods, endometriosis frequently causes widespread chronic pain, infertility, painful intercourse, related autoimmune conditions, anxiety and depression. While many sufferers report feelings of loneliness or isolation from friends and family, living with endometriosis can also put a strain on romantic relationships.
“It is estimated 30 to 50 percent of women diagnosed with endometriosis experience infertility issues,” says Dr. Jennifer Ritchie-Goodline, a licensed psychologist based in Colorado who works with people whose relationships are affected by endometriosis and other chronic conditions. This can be heartbreaking for couples trying to conceive. Fertility treatments such as IVF are available, though they are often costly, invasive and emotionally taxing.
Many people with endometriosis may struggle with having sex. “Fear of hurting one’s partner or being hurt may also, understandably, reduce enjoyment and the desire to participate in sexual activity, leading to avoidance of physical intimacy,” says Ritchie-Goodline. The mutual pleasure derived from sex can bring couples closer together, and it can be frustrating when sex hurts or libido is low due to pain — especially when this symptom persists despite treatment.
Beyond pelvic pain and reproductive function, chronic pain and associated fatigue can make everyday activities, such as going to work, an impossible feat. Paola, 38, had recently assumed a new full-time job when pain symptoms from endometriosis crept back into her life. As her work absences became more frequent, her relationship was put under financial strain. “In one of many arguments, my boyfriend said, ‘You just don’t want to work because you hate working,’” she said.
“You’re making it up” is the last thing you want to hear when in chronic pain, but Paola heard it often from her boyfriend up until a few years ago. “He thought I was lazy — or crazy. He told me it was all in my head,” Paola said. Meanwhile, opioid drugs didn’t even touch her pain.
Ritchie-Goodline explains that this kind of dismissive behavior, paired with the diagnostic delay common with endometriosis, often affects one's sense of self and emotional health. “All of these issues may lead to a relationship dynamic where the relationship starts to focus on illness, and the pain becomes the star of the show rather than each partner,” she says. “The partner struggling with the chronic pain condition may start to feel guilty or overly dependent, like a burden for needing caretaking, and in turn, her partner may start to feel like ‘just a caretaker’ or become resentful that their own needs are not being met.”
The turning point in Paola’s relationship came when she lost consciousness from pain and was rushed to the emergency room one evening. “My boyfriend started panicking because I’d told him how bad it was, and he hadn’t listened,” she said. “When I got to the [ER] there was not much they could do — they knew it was endometriosis causing my pain.”
After this episode, he informed himself about Paola’s condition. “Had that not happened, though, I don’t think my boyfriend would have changed,” she said.
When it comes to educating friends, family and significant others, it’s important to set expectations and practice patience. Ritchie-Goodline says direct, positive communication is key. Be open with your partner, but your partner also needs to be receptive. If medical professionals doubt your pain, which happens to women far too often, you want a partner who will stand by you.
“My partner was always supportive. I just think he didn’t know quite what I needed,” said Laura, 27, who also suffers from endometriosis. “I realize there was a lot I wasn’t expressing, too. I poured my heart out one night, telling my husband, ‘All I need from you is 100 percent support. It’s taking everything from me; I don’t want it to take you, too.’ Once I opened up, he apologized, and things improved for both of us.”
If you’re a partner or spouse of someone with endometriosis, Ritchie-Goodline emphasizes the importance of educating yourself about the condition and its potential impact. “It’s really important that partners of women with endometriosis offer support, understanding and validation of their loved one’s experience — it’s important to not be dismissive and to communicate regularly.”
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