Endometriosis is a chronic illness that can cause pain and a wide array of other symptoms, including infertility. It occurs when endometrial-type tissue, which is normally found lining the inside of the uterus, grows in locations outside of the uterus, including the fallopian tubes, ovaries, and other organs in the pelvis and abdomen.

Endometriosis affects 10 percent of all women of reproductive (child-bearing) age. Up to 50 percent of women with infertility have endometriosis. Infertility can be caused by complications of endometriosis or treatments for endometriosis. Fortunately, there are treatments available that can help people with endometriosis improve the chances of getting pregnant naturally or with medical assistance.

Pregnancy Basics

To understand some of the ways that endometriosis causes infertility, it is important to know how a normal pregnancy occurs. During the ovulation phase of the menstrual cycle, an egg is released by one of the ovaries and travels through the fallopian tube into the uterus. If that egg is fertilized by sperm during its journey, it can implant itself into the endometrium of the uterus and grow to become an embryo. Endometriosis can interfere with this process in several ways.

How Does Endometriosis Cause Infertility?

Endometriosis lesions can appear in different parts of the body. Both the lesions themselves, as well as adhesions and fibrosis (scar tissue that causes organs to stick to each other) caused by inflammation, can cause symptoms. When endometriosis affects the ovaries, it can cause cysts to form (endometriomas) that can prevent normal egg release. Endometriosis lesions in the fallopian tubes can block the normal function of the tube and keep eggs from reaching the uterus. Adhesions due to endometriosis can prevent eggs from traveling to the uterus or distort the normal shape and position of the ovaries, fallopian tubes, and uterus. Infertility with endometriosis is also believed to occur due to inflammation. This inflammation can lead to abnormal endometrium in the uterus. It can cause inflammatory responses that prevent the normal implantation of fertilized eggs or cause the body to attack fertilized eggs.

Treatment-Related Infertility

Some treatments for endometriosis, including certain surgeries and drug treatments, can cause either permanent or temporary infertility.

Surgery

Surgical treatment for severe endometriosis can include removal of the uterus (hysterectomy) or ovaries (oophorectomy). Hysterectomy or removal of both ovaries or both tubes causes irreversible infertility. Surgery to remove endometriosis lesions (or any pelvic surgery) can sometimes lead to adhesions that can cause infertility.

Hormone Therapy

Hormone therapy can treat endometriosis by preventing or altering the normal fluctuations in hormone levels during the menstrual cycle. Estrogen plays a major role in both ovulation and growth of the endometrium (and endometriosis lesions). Progesterone, gonadotropin-releasing hormone (GnRH), follicle-stimulating hormone, and luteinizing hormone must also be produced and released in a very complex pattern for normal ovulation and implantation of fertilized eggs to occur. Any change to these hormone levels can cause infertility.

Hormone therapy can ease endometriosis symptoms by preventing the growth of endometriosis lesions in response to estrogen. Treatment with oral contraceptives (birth control pills), progestins (synthetic progesterone), GnRH antagonists, and aromatase inhibitors can reduce endometriosis symptoms and also prevent pregnancy.

Many members of MyEndometriosisTeam share the frustration of struggling to get pregnant:

• “I find it difficult, as I have been trying for nearly two years now. When you see other people who can get pregnant really easily, I get upset. I try to be positive, but it is so difficult when you get told it is a very low chance.”
• “Conception and fertility are always on my mind. It’s hard to not think about whether I’d be able to have a little baby of my own.”
• “By far, the worst part of my condition is the infertility.”

Restoring Fertility With Endometriosis

There are several treatment options to improve fertility in people with endometriosis:

• Surgery
• Fertility drugs
• Artificial insemination
• In vitro fertilization

The best treatment for an individual varies based on their age, extent of disease, and other factors.

Endometriosis Stages and Infertility

Endometriosis stages are used to describe the extent and severity of the disease. There are four stages of endometriosis: minimal (stage 1), mild (stage 2), moderate (stage 3), and severe (stage 4). Although these stages aren’t always useful for describing the severity of a person’s symptoms, they can help to decide what treatments are best to improve fertility. People with minimal to mild endometriosis who have trouble conceiving can have improved fertility after surgery to remove endometriosis lesions and adhesions. People with moderate to severe endometriosis are more likely to need fertility treatments in order to become pregnant.

Surgery

For many people with endometriosis, laparoscopic surgery to remove lesions can restore fertility. The surgical removal of endometriosis lesions, ovarian cysts, and adhesions in the pelvis is sometimes all that is needed to allow for normal pregnancy, especially in younger people or those with minimal to mild endometriosis. Endometriosis can cause extensive scarring that can distort the normal shape and position of the uterus, fallopian tubes, and ovaries, but surgery to remove adhesions and restore organs to their proper place can improve fertility. However, depending on the extent of lesions, adhesions, and damage to the normal structure of the reproductive organs, pregnancy may still be difficult even after laparoscopy.

Stopping Hormonal Therapy

Temporarily stopping oral or injected hormone therapy or removing a hormonal intrauterine device (IUD) can reverse infertility due to hormone therapy. This allows ovulation by restoring the normal hormonal changes associated with menstruation. Unfortunately, this can also lead to the return of endometriosis symptoms. Depending on the severity of symptoms, this may not be a viable option for some people.

Fertility Treatments

People who are having difficulty conceiving after having surgery or other therapy for endometriosis may seek the help of a fertility specialist. Fertility treatments can include drugs to stimulate ovulation, intrauterine insemination (IUI), or in vitro fertilization (IVF). Fertility drugs, such as clomiphene, improve the chance of pregnancy by stimulating the ovaries to release mature eggs. In addition to clomiphene, intrauterine insemination can increase the chances of pregnancy by depositing sperm directly into the uterus.

IVF is a good, but expensive, option for helping achieve pregnancy in those who have more severe endometriosis, especially if it affects the ovaries or fallopian tubes. IVF involves using drugs to stimulate eggs to mature in the ovaries, removing those eggs with a needle under ultrasound guidance with sedation, fertilizing them with sperm in a laboratory, and depositing the fertilized eggs into the uterus. People who are preparing to undergo oophorectomy may consider harvesting viable eggs from their ovaries to give them the option of using IVF in the future. For people who have had a hysterectomy, using IVF and a surrogate can allow them to have a child although they are unable to become pregnant themselves.

Many members of MyEndometriosisTeam have shared their pregnancy success stories:

• “My partner and I tried for four years to get pregnant, and we finally did in October last year. I now have a 4-month-old baby girl. I hope you all are as lucky as I am to have just one miracle baby. Don’t give up hope.”
• “I believed I wasn’t going to have a baby. I was booked to see a consultant next week to have a hysterectomy only to find out I’m now pregnant. Never give up.”
• “We tried for two years, and I started having blood tests and fertility treatments, and I found out I was pregnant. Never give up. Your body is amazing, even though some days you hate it.”

Pregnancy Complications and Endometriosis

People with endometriosis have a higher than usual risk of developing complications during pregnancy, including serious complications that can endanger both mother and child. Proper neonatal care is important for any pregnancy, but the increased risk of complications that comes with endometriosis makes careful monitoring of you and your child’s health crucial to having a safe pregnancy. If you have a history of endometriosis, be sure to inform your obstetrician.

Complications such as miscarriage, stillbirth, premature labor, low birth weight, a cesarean section, gestational diabetes, high blood pressure, and bleeding occur more in people with endometriosis. Studies have found that the odds of developing severe preeclampsia (dangerously high blood pressure) while pregnant are about 70 percent higher in women with endometriosis, but the risk is still low at 1.1 percent. Other complications occur at much higher rates with endometriosis than without. The risk of placenta previa (placenta growing over the opening of the uterine cervix) can be almost four times higher with endometriosis. This risk is even more increased in women who have undergone surgery to treat endometriosis. The risk of developing gestational cholestasis (a liver disorder) is almost five times higher in women with endometriosis.

The good news is that most of these complications can be managed or treated. Maternal-fetal medicine (MFM) specialists, or perinatologists, are obstetricians trained to care for high-risk pregnancies, including pregnancies with endometriosis, diabetes, and other chronic conditions. If you have endometriosis and are pregnant, consultation with and careful monitoring by an MFM specialist can help ensure that any complications are treated as soon as they arise. If you have endometriosis (or another preexisting disease) and are considering pregnancy, consult with an MFM specialist beforehand to help you understand the risks of pregnancy and what you can do to help minimize them.

Fertility treatments for endometriosis also carry a risk of complications. Surgery to remove lesions and adhesions can sometimes result in more adhesions forming, but this risk can be decreased by using special treatments that help prevent adhesion formation. Surgery to remove ovarian cysts can cause scarring that prevents normal egg release or leads to ovarian failure.

Some members of MyEndometriosisTeam have experienced complications of pregnancy:

• “I am emotionally struggling after numerous miscarriages. I’m trying my best to keep going but still, it’s extremely difficult. I feel like no one understands what I am going through.“
• “No one would take me seriously until I had my fourth miscarriage. I was finally referred to a fertility specialist, who did exploratory surgery, found endometriosis, and removed as much as he could.”
• “I’ve had two first trimester miscarriages and trouble getting pregnant. I don’t know what to do, and I don’t know if my insurance covers fertility treatments.”
• “I was 24 and diagnosed with stage 4 and had a total hysterectomy because it was so bad. I miscarried a few times before and always wondered why until then, but now it’s been four years and I can honestly say, it does get easier.”

Infertility and Endometriosis — There Is Hope

Endometriosis-related infertility can be a devastating and unexpected side effect of a disease that can cause debilitating pain and other serious symptoms. However, with proper treatment and disease management, many with endometriosis can still get pregnant and carry a baby to full term.

MyEndometriosisTeam members share words of encouragement for their teammates:

• “Stay strong, stay very active and healthy, and never lose hope!”
• “You must do your own research and be a loud and persistent advocate for your reproductive health.”
• “Bottom line is: If you are fighting for your fertility with endo, don’t give up!”

Talk With Others Who Understand

MyEndometriosisTeam is the social network for people with lymphoma and their loved ones. On MyEndometriosisTeam, more than 119,000 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.

Have you experienced infertility or pregnancy with endometriosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.