Endometriosis: a whole-body, whole-life struggle…

• Other organs : Endo has shown up in nearly every organ system. Lesions have been found in the spleen, pancreas, and even the brain. In one remarkable case, a woman had seizures every month, which were traced to a tiny endometriotic cyst in her brain. We now accept that cells can travel far from the pelvis via blood or lymphatic vessels. So if she says, “I feel something wrong in this part of my body, even though it sounds crazy,” believe her. The science supports her intuition.

Reading that list, you might think your partner is crazy, but she’s not. In fact, validation studies show that patients whose multi-system symptoms are believed have less anxiety and depression than those who are dismissed. When you as her partner trust her body’s signals, you actually help her healing.

What happens when pain is dismissed?

Because endo can cause such a wide array of symptoms, women often feel their bodies are “falling apart.” Here are some things endo patients commonly say:

• “My pain doesn’t match what they see on scans.” The medical community acknowledges this happens all the time. Imaging often misses deep or small lesions. So she may be writhing in pain while MRIs and ultrasounds look normal. This is real pain, not imagined.

• “They dismiss it because it isn’t just in my pelvis.” If she has shoulder pain, lung symptoms, or GI issues, a gynecologist might not make the connection. Likewise, gastroenterologists and urologists often treat her only for gut or bladder problems, not seeing the whole picture. This “siloed” medicine can leave her feeling fragmented.

• “I feel like my body is falling apart, and every specialist only looks at their little square.” She may see a gynecologist, GI doctor, urologist, rheumatologist, etc., each focused on one area. Meanwhile, the big question of why all these things happen to her goes unanswered.

• “Doctors say I’m ‘only a mild case,’ but I’m in constant agony.” This is a common paradox. Severity of lesions (Stage I vs. IV) doesn’t always predict pain. NHS England warns clinicians that a “mild” diagnosis on paper can still mean serious life disruption for the patient.

• “They told me it was all in my head.” Unfortunately, many women hear this. Studies show that invalidation of pain by family or doctors (implying “you’re exaggerating”) actually increases the patient’s anxiety and depression. Invalidation is the worst kind of emotional pain.

All of this adds up to a feeling of alienation in one’s own body. It’s no wonder patients report high levels of stress and mental health strain. In fact, one US survey found 67.5% of endo patients say their pain significantly impairs their daily functioning.

That’s two-thirds of sufferers missing work, school, or social life. These stats aren’t hidden; they’re in big medical journals. So if someone argues “your pain can’t be that bad,” remind them of the data.

What’s the emotional and practical impact?

Living with endo is not just a physical battle but an emotional and practical marathon. Women often feel guilt, shame, and hopelessness along with their pain. It is “unpredictable” and “life-altering,” leading many women to clinically significant anxiety and depression.

Did you know that one-third of women with endo have diagnosed anxiety or depression?

Rates even higher than in other chronic pain conditions that a woman has aside from endometriosis. It’s not about “being weak”, it’s the natural response to chronic, unexplained suffering.

Partners like me and you should know that your loved one isn’t just “upset” or “moody,” she’s battling a chronic illness that takes a huge mental toll.

The disease also breaks trust in one’s body. Many women say that their bodies are failed them. After years of thinking “I must be crazy,” finally learning it’s a real disease can be a relief. Partners can validate by acknowledging the struggle: “I can only imagine how awful that feels. You’ve been through so much.”