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What exactly is adenomyosis — And how is it linked to infertility?

“Towards the end of my fertility journey I finally got some answers,” she said while speaking at the BlogHer conference in New York City, per Essence.

But only recently was Gabrielle, 45, given a diagnosis that helped explain her struggle.

“Everyone said ‘You’re a career woman, you’ve prioritized your career, you waited too long and now you’re just too old to have a kid-and that’s on you for wanting a career,’ ” she said. “The reality is, I actually have adenomyosis.”

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Gabrielle waited years for an adenomyosis diagnosis-and that’s not uncommon, since so much about the condition, including what causes it, is still unknown.

Adenomyosis is a condition that affects a woman’s uterus, according to the National Institutes of Health (NIH), and is similar to endometoriosis, which occurs when endometrial tissue grows outside of the uterus.

With adenomyosis, however, that endometrial tissue moves into the outer, muscular walls of the uterus, explains Christine Greves, M.D., a board-certified ob/gyn at the Winnie Palmer Hospital for Women and Babies. This can make the uterus larger than normal because of the extra tissue-it's not necessarily noticeable, but it can cause abdomen tenderness or pelvic pressure, per the Mayo Clinic.

While there's no known cause of the disease, which most often occurs in women ages 40 to 50 who have had at least one pregnancy, its growth depends on the body's estrogen, according to the Mayo Clinic.

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While the adenomyosis in older women could be related to long-term exposure to estrogen (you know, because being a woman), the condition may also be common in younger women, per the Mayo Clinic.

Some women may have no symptoms of adenomyosis, Greves says, while others have some pretty distinct ones, including:

  • Painful periods
  • Heavy cycles
  • Bad cramps
  • Drawn-out periods

But adenomyosis is often hard to diagnose, which is why there's so little research on it. For the most part, a diagnosis of adenomyosis is a diagnosis through exclusion-when a doctor makes a diagnosis by ruling out other diseases, according to the NIH.

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The only way to actually confirm that diagnosis, per the NIH, is through surgery to remove the tissue of the uterus and examine it.

There is a link between adenomyosis and infertility, but it’s not completely conclusive, says women’s health expert Jennifer Wider, M.D.

Some experts say that the condition may impair fertility by affecting the transport of the fertilized egg from the fallopian tubes to the uterus, or by changing how the endometrium (the mucus membrane that lines the uterus) functions, she says.

Others suggest the fertility issues experienced by people with adenomyosis like Gabrielle may be due to an undiagnosed endometriosis, which is known to cause fertility issues, says Kevin M. Audlin, M.D., director of the Endometriosis Center at Mercy Medical Center in Baltimore. “But adenomyosis by itself doesn’t seem to cause that much of a decrease in fertility,” Audlin says.

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Treatment for adenomyosis in particular is tricky, Greves says.

While pain medication might help with the discomfort-which is honestly putting it lightly-birth control methods that contain progesterone are often prescribed to help decrease bleeding.

In severe cases, doctors may even recommend a hysterectomy (a surgery where all or part of a woman's uterus is removed), or an adenomyectomy (which removes the abnormal tissue but preserves the uterus). Without surgery, however, symptoms often go away with menopause, according to the NIH.

Though treatment for adenomyosis-and adenomyosis itself-can impact a woman's fertility, an adenomyectomy may preserve the uterus enough for a woman to conceive, according to a 2016 review article in the journal Obstetrical and Gynecological Survey. However, more research is needed on the subject.

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If you have adenomyosis and you want to conceive, talk to your doctor about your options. They’ll likely want to see if you have any endometriosis that could impair your fertility and go from there, Greves says.

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