I’m a health journalist and the co-founder of Endo Warriors, which provides education and support to people with endo. I’m also writing a book about family planning. And I’m writing a book that will delve into everything you need to know about if, when, and how to become a parent, called So When Are You Having Kids?
I was diagnosed with endometriosis when I was 12. Growing up, I knew infertility was a possibility, but I thought in vitro fertilization (IVF) was foolproof, so I didn’t worry too much. When I was 24, I was diagnosed with premature ovarian failure, which doctors suspect came from having seven endo surgeries.
I’ve been trying, on and off and with various levels of intensity, to get pregnant for almost five years with no success. Infertility has been the most trying and soul-sucking thing I’ve ever gone through, which is why I think it’s important to talk candidly about infertility.
Endometriosis is one of the leading causes of infertility, but not everyone with endometriosis is infertile. Estimates suggest around 30 percent to 50 percent of people with endo will face difficulties getting or staying pregnant.
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Endo can impair fertility in many ways: inflammation, distorting your pelvic anatomy, fallopian tube scarring and adhesions, altering immune system functioning, impairing implantation of a pregnancy, changing the hormonal environment of the eggs, and altering egg quality.
Repeat surgeries, as well as operating on endometriomas (a type of ovarian cyst), can also damage your ovarian reserve. Essentially, there are a lot of ways endo can damage your fertility, and it can be tough to figure out which endo-related issue is causing problems.
If you have endometriosis and are concerned about your fertility, it’s important to be proactive. One easy thing you can do is ask your gynecologist to check the hormones related to ovarian health (namely FSH, AMH, and estradiol).
If those tests come back abnormal for your age, your doctor will likely recommend you see a fertility specialist known as a reproductive endocrinologist. There are other tests that can check the health of your uterus and tubes, and look at the number of follicles your ovaries produce.
Sometimes people with endo assume they will be infertile and so they don’t use contraceptives or start trying to conceive before they are ready, and then they get pregnant without any issues. It’s hard to say who will and won’t get pregnant.
Screening for hormone issues, uterine abnormalities, endometriomas, and problems with the fallopian tubes can help you identify problems early on. If having kids is something you want, now or in the future, make a game plan with your gynecologist that fits your timeline.
This piece was adapted from a Twitter thread originally posted March 15.