If you have endometriosis, you might have a host of concerns ranging from how to quell the notoriously agonizing pain to how this condition may impact your fertility. Though estimates vary, some figures suggest that between 30 and 50 percent of people with endometriosis have impaired fertility, according to the Mayo Clinic. But what does that actually mean for you if you’re dealing with this condition?
What is endometriosis?
Endometriosis is commonly thought to happen when the inner lining of the uterus grows on other organs. According to the Merck Manual, endometriosis lesions can show up on organs including the ovaries, fallopian tubes, outer surfaces of the uterus, vagina, rectum, or even far-flung places like the lungs and heart (in very rare cases). This tissue can bleed and cause symptoms like incredibly painful periods.
Doctors aren’t entirely clear on why these growths crop up where they shouldn’t. According to the Mayo Clinic, one possible cause of endometriosis is retrograde menstruation, which is when period blood flows backward into the body rather than out of the vagina. Another factor may be that an immune system issue in people with endometriosis prevents their bodies from destroying endometrial tissue outside of the uterus, the Mayo Clinic explains.
A different theory holds that the wayward tissue of endometriosis is similar to the lining of the uterus but can actually produce its own estrogen, causing painful inflammation, as SELF previously reported.
Wherever this misplaced tissue comes from, it’s clear that it can impact fertility in some people with endometriosis.
Endometriosis doesn’t always make it hard to conceive.
Before we explore the mechanisms by which endometriosis may affect fertility, we want to be clear: Trying to get pregnant when you have endometriosis is absolutely not a hopeless cause. “Women with endometriosis can get pregnant and do all the time,” Karli Goldstein, D.O., associate surgeon and fellow of endometriosis surgery at Seckin Endometriosis Center, tells SELF.
You may not need any kind of fertility treatment at all, even with endometriosis. According to the Mayo Clinic, people with mild to moderate endometriosis, especially those who are younger, may be able to get pregnant without intervention.
However, endometriosis can affect fertility in a few ways.
Doctors are still investigating exactly how endometriosis can affect fertility. There appear to be several ways that endometriosis can throw a wrench into the process.
The added difficulty is largely because conceiving requires a chain of complicated events to take place successfully. “For pregnancy to occur, a long series of perfect steps has to happen,” Dr. Goldstein says.
You may remember this from sex ed: An egg has to meet with sperm at the right time in the menstrual cycle, they have to be of good enough quality in order for fertilization to take place, then the fertilized egg must be able to move down a fallopian tube to implant in the uterus. All of this happens before you even get a plus sign on a pregnancy test.
Endometriomas are one possible obstacle in this process. These benign ovarian growths that happen due to endometriosis are sometimes called “chocolate cysts” because of the old blood that makes up their thick, tar-like contents. These cysts can “invade the healthy ovary and destroy the eggs that are resting there,” Zev Williams, M.D., chief of reproductive endocrinology and infertility at New York-Presbyterian/Columbia University Irving Medical Center, tells SELF. Endometriosis-induced cysts can also adhere to the fallopian tubes, possibly making it difficult for a fertilized egg to travel to the uterus to receive nourishment.
Cysts are not the only concern. Endometriosis can cause scar tissue that might make organs, including those in the reproductive system, begin to stick together, impeding their function. “The overall anatomy in the pelvis can be distorted from scarring,” Christopher N. Herndon, M.D., assistant professor and associate medical director of the IVF program at UW Medicine, tells SELF.
Another issue is that endometriosis tends to cause ongoing inflammation that can make the whole reproductive chain less efficient, Dr. Goldstein says. For instance, it seems as though inflammation might affect egg production and ovulation, according to a 2013 review of endometriosis pathology in Obstetrics and Gynecology Clinics of North America.
Some endometriosis treatment options, like hormone therapy, may reduce endometriosis’ impact on fertility.
In general, if you have endometriosis and are ready to have a baby, most doctors recommend conceiving sooner rather than later. Endometriosis is a progressive disease that may get more severe with time. Of course, every situation is different, and you should discuss how your endometriosis might affect your chances of conceiving with your doctor before you start trying to conceive.
With that said, there are several possible levels of intervention for those who are having issues conceiving due to endometriosis. Hormone therapy is one of them.
Hormonal contraceptives and other forms of hormone therapy are common treatments for endometriosis. According to the Mayo Clinic, hormonal fluctuations during the menstrual cycle prompt endometriosis lesions to become thick and bleed, so stabilizing your hormone levels may result in less pain. When it comes to fertility specifically, estrogen in hormonal drugs can prevent you from ovulating, which can then reduce your risk of getting ovarian cysts that may impact conception, the Mayo Clinic explains. And both estrogen and progestin in hormonal treatments can prevent the growth of endometriosis lesions in some people. This may reduce your chances of developing endometriosis complications that can affect pregnancy, such as reproductive organs sticking together or scar tissue.
That said, you’d need to stop hormone therapy once you’re ready to start trying to get pregnant.
Your doctor may recommend minimally invasive surgery.
In some cases, laparoscopic surgery to remove lesions, cysts, and scar tissue may help minimize damage to the reproductive organs and allow for pregnancy, Dr. Herndon explains. This form of surgery, which is minimally invasive, involves a doctor putting a slim instrument through a small incision on your abdomen to see inside of you, then using other instruments to remove endometriosis lesions through another incision, according to the Mayo Clinic.
In addition to possibly making it easier to conceive, excising endometrial lesions, cysts, and scar tissue may have the added benefit of reducing endometriosis-related pain. This can be especially important for anyone going off of hormonal contraception that reduced endometriosis pain in order to conceive.
Depending on the specifics of your case, after laparoscopic surgery when you have fewer endometriosis lesions (or, ideally, none) to possibly interfere with conception, your doctor may recommend hormone-based fertility treatments like clomiphene citrate (Clomid). These kinds of drugs stimulate egg production in your ovaries so you might be able to get pregnant more quickly before the endometriosis has a chance to recur.
Egg or embryo freezing is another potential option.
If you’re not ready to have children but are concerned about your future fertility due to endometriosis, you may want to discuss the possibility of egg freezing with your doctor, says Dr. Goldstein. This can be a particularly good option if you’re in your 20s, when your fertility is typically higher and before endometriosis has as much of an opportunity to affect your reproductive system.
With that said, egg freezing can be prohibitively expensive, with prices often reaching at least $10,000 to freeze the eggs, then more to store and thaw them. This can vary based on factors like your location and health insurance, but in general, freezing your eggs is a costly process.
Embryo freezing is similar to egg freezing. In this scenario, doctors fertilize eggs with sperm before freezing them.
Both egg and embryo freezing may be useful if someone with endometriosis decides to get a hysterectomy (removal of the uterus and potentially other organs) to try to treat their condition. Though this is typically a last resort because the decision to get a hysterectomy is so complex and because it doesn’t always end endometriosis pain, some people do opt for this chance at relief. In that case, freezing eggs or embryos may make it possible for a surrogate to carry a pregnancy, so someone may still have children that way even after a hysterectomy. You can read about the similarities and differences between egg and embryo freezing here.
Your doctor may recommend IUI or IVF to conceive with endometriosis.
Intrauterine insemination (IUI) is often a precursor to IVF. This is when a doctor places sperm directly into a person’s uterus during ovulation, according to the Mayo Clinic. But IUI requires the person who is conceiving to have well-functioning reproductive organs; an egg must still be able to take a trip through a fallopian tube, get fertilized along the way, and implant into the uterus, Dr. Goldstein says. Since endometriosis can make that less likely for various reasons, doctors sometimes suggest trying IVF instead.
However, IUI may still help some people with endometriosis conceive, and scientists are exploring whether getting laparoscopic surgery to remove endometrial lesions before IUI may increase the odds of getting pregnant. It also tends to cost less than IVF (sometimes as low as $300 a cycle) though, like all other forms of treatment, this can vary based on multiple factors.
In IVF (in vitro fertilization), doctors combine eggs and sperm in a lab before implanting a fertilized embryo into a person’s uterus, bypassing the ovaries and fallopian tubes altogether. While many people might try the earlier recommendations before proceeding to this step, doctors may recommend those with a more severe case of the disease or who have been trying to get pregnant for a long time move more quickly to IVF. However, IVF can be even pricier than egg freezing, which is another component to factor into your decision. On average, a single IVF cycle may cost between $10,000 and $15,000, according to the Society for Assisted Reproductive Technology.
Dr. Goldstein says she went through IVF treatment due to endometriosis, eventually having her fallopian tubes removed, further endometriosis excision surgery, and several rounds of IVF before conceiving. “It was a long road,” she says. “But I am so grateful it was successful.”
If you have endometriosis and hope to get pregnant at any point, talk to your doctor.
This is a lot of information to process on your own. The main takeaway is that endometriosis doesn’t automatically mean you won’t be able to conceive, but it can make it harder. “Don’t lose hope,” says Dr. Herndon. “Not all women with endometriosis experience infertility, and treatments for endometriosis-related infertility can often lead to success.”