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If you're reading this, then you might be curious if your endometriosis can come back after being treated. The not-so-good news is that it is likely to recur, even after surgical intervention, which can be yet another hurdle for those who may be trying — and struggling — to get pregnant.
The good news is that there are ways to diagnose and treat endometriosis that can help increase your chances of getting pregnant with the condition. Read on to learn more.
But first, what exactly is endometriosis?
"Endometriosis is a disease where tissue that is similar to the lining of the uterus grows outside of the uterine cavity, commonly in the pelvis on the fallopian tubes, ovaries, peritoneum, bladder, and intestines but also possibly farther away from the pelvis as well," says Dr. Jessica Ryniec, a reproductive endocrinologist & infertility specialist at CCRM Fertility in Boston.
The most common treatments for endometriosis involve a surgical laparoscopy to remove the tissue or hormone suppression therapy, which can help decrease inflammation levels. While these treatments can be effective, there is also a high likelihood the endometriosis can come back despite these efforts. This can be upsetting for many individuals with the condition, but luckily, there are skilled professionals who specialize in treating this disease.
We spoke with Dr. Ryniec all about the potential recurrence of endometriosis after treatment and how you can best navigate that territory now and in the future.
Is it common for endometriosis to return?
Unfortunately, it is common for endometriosis to come back after being treated. The recurrence of endometriosis may vary based on the location of the disease, your age, and the treatment modality used prior. In terms of surgery, laparoscopic ablation and excision are the two most common methods. While less invasive and more popular, ablation has shown higher levels of recurrence since it isn't able to go as deep and only aims to remove surface level indications of diseased tissue.
Recurrence is also more common in younger women and in those who have deeply infiltrative endometriosis (meaning it's buried deep into the surrounding tissue).
"Endometriosis is a chronic disease that for some requires lifelong management," says Dr. Ryniec, and it comes back about 20 to 40% of the time after conservative surgery.
How do I know if my endometriosis is back?
Some signs that your endometriosis might have returned are abnormal menstruation, fatigue, pain during or after sex, back and pelvic pain, and/or digestive issues. This recurrence of endometriosis can be not only physically painful, but also may cause emotional distress for individuals trying to get pregnant.
Does endometriosis cause infertility?
Endometriosis is one of the leading causes of unexplained infertility, and 20–25% of patients are asymptomatic, meaning they don’t find out they have endometriosis until they’re already struggling with fertility issues.
"For those with endometriosis, up to 50% may have infertility, and alternatively if someone has infertility, up to 25 to 50 percent may also have endometriosis," says Dr. Ryniec. "This could be due to altered anatomy like scarred/blocked fallopian tubes or pelvic adhesions, inflammation and progesterone resistance, altered egg growth and egg quality and even through the psychosocial impacts of chronic pain."
If you are dealing with unexplained infertility, IVF implantation failure, or recurrent pregnancy loss, it’s advised to ask your healthcare provider or fertility specialist about endometriosis.
How can you test for endometriosis?
To figure out if you have endometriosis, your doctor will usually take a deep medical history, conduct a physical examination, and do some routine imaging. While surgical laparoscopy can provide the most definitive diagnosis, a less-invasive option to discuss with your doctor is ReceptivaDx — the only test that can identify endometriosis, progesterone resistance, and endometritis in a single sample.
With a simple uterine biopsy, ReceptivaDx tests for BCL6, a marker that identifies uterine lining inflammation most often associated with asymptomatic (silent) endometriosis. "BCL6 is an immune marker that is overexpressed in the lining of the uterus for those with endometriosis and can cause progesterone resistance and altered receptivity leading to infertility, implantation failure, and even miscarriage," says Dr. Ryniec.
BCL6 is found in more than 50% of women with unexplained infertility and ~65% of women with two or more IVF failures. In the case of those individuals looking to engage in IVF, surgical treatment or hormone suppression may be required before embryo transfer to increase the chance of success.
The positive news is that once treated, women who test positive for BCL6 have a >60% chance of a live birth (up from 11% if left untreated). If the test result is negative, the probability is also above 60%.
What to do if endometriosis comes back
Whether you think your endometriosis may have come back after being treated, or you’re dealing with secondary infertility following an endometriosis diagnosis, then you'll want to schedule an appointment with your doctor to discuss a treatment plan — especially if the plan is to grow your family in the near future.
With pain management, lifestyle changes, and a trusted fertility team, it is possible to get pregnant with endometriosis. It may just take a little bit longer to get there!
Casey Clark is a freelance writer from New York City who specializes in beauty, food, and lifestyle content in the commerce sector. Her work has been featured in Women’s Health, Allure, Cosmopolitan, SELF and more. When she’s not writing, you can find her swatching the latest lipsticks or out to brunch with her girlfriends.