Uterine Factor Infertility

What is uterine factor infertility?

Uterine factor infertility is a condition where a person is unable to get pregnant because their uterus isn’t present or isn’t functioning. Your uterus is important in pregnancy because it’s where the fetus develops and grows.

What are the types of uterine factor infertility?

There are two types of uterine factor infertility: congenital and acquired.

Congenital uterine factor infertility

If you have congenital uterine factor infertility, it means that you were born without a functioning uterus due to an issue that occurred during fetal development.

Acquired uterine factor infertility

Acquired uterine factor infertility means you develop the condition during your life. Many things can happen to your uterus that affect your fertility. For example, a hysterectomy, which is a procedure to remove your uterus, is a cause of acquired uterine factor infertility.

But it’s possible to have uterine factor infertility and still have a uterus. Factors like uterine fibroids, polyps, scar tissue, radiation damage (from cancer treatment) or injuries to your uterus can prevent a pregnancy. This can include infertility that’s caused by Asherman’s syndrome, a rare condition where scar tissue in your uterus creates blockages that prevent a pregnancy from happening. Causes of Asherman’s syndrome include infections, radiation and procedures like dilation and curettage (D&C).

How common is uterine factor infertility?

Uterine factor infertility may affect up to 3% of people with a uterus who haven’t reached menopause, but the exact rate isn’t known.

What are the signs or symptoms of uterine factor infertility?

Symptoms vary depending on the cause. For example, some people never have a menstrual period and that’s the first clue. Other times, a person experiences pelvic pain or feels pressure in their pelvic region.

What causes uterine factor infertility?

Uterine factor infertility happens because a person is born without a functioning uterus, has surgery to remove their uterus or has another condition that contributes to infertility.

Being born without a uterus

Being born without a uterus or with an underformed uterus is called Mayer-Rokitansky-Küster-Hauser syndrome (MRKH). This is a rare congenital disorder that causes your vagina and uterus to be missing or underformed. In MRKH, ovaries are present and functioning, so people may still have mood changes and other signs of a menstrual cycle, but they won’t have bleeding. This is because your ovaries make hormones that cause menstruation. An MRKH diagnosis typically occurs during the teen years when menstrual cycles (periods) don’t start as expected.

Other congenital disorders that affect the shape of your uterus can contribute to infertility. However, pregnancy is still highly possible with these conditions.

Having a hysterectomy

Many different reasons may cause a person to have a hysterectomy, including:

• Hemorrhage: You might need an emergency hysterectomy if you lose large amounts of blood (hemorrhage). This can happen during a C-section or other surgery, but is very rare.
• Uterine cancer: You may have a hysterectomy due to a cancer diagnosis. Removing your uterus is beneficial because it prevents cancer cells in your uterus from spreading to other reproductive organs.
• Severe endometriosis, uterine fibroids or adenomyosis: These diseases can cause symptoms including pelvic pain, bowel and bladder issues and heavy bleeding. There are many treatments for these conditions that don’t require a hysterectomy. But in severe cases or when those treatments don’t work, a person may need a hysterectomy to relieve their symptoms.

How is uterine factor infertility diagnosed?

Healthcare providers most often diagnose congenital uterine factor infertility when a person is in their teens and hasn’t had their first menstrual period. A healthcare provider will typically use an ultrasound to look at your reproductive organs and, if needed, an MRI, noting if your uterus has an irregular size or shape, or if it’s missing entirely. They may perform a pelvic exam either in the office or in the operating room.

For those with acquired uterine factor infertility, your healthcare provider will look over your medical history.

How is uterine factor infertility different from other types of infertility?

It can often be difficult to pinpoint the reason a person or couple has infertility issues. While a physical exam is the first step for a diagnosis, ultrasound and other imaging tools can confirm uterine factor infertility.

All causes of infertility can have a great emotional toll on the people experiencing it. Different types of infertility may cause unique kinds of challenges.

How is uterine factor infertility treated?

For a long time, there wasn’t a treatment for people without a uterus. Whether it happened at birth or through a hysterectomy, not having a uterus meant that the only options for family-building were adoption or gestational surrogacy.

But uterus transplantation has changed this in recent history. Though they aren’t common, uterine transplants can allow a person to have a baby even if they have uterine factor infertility.

A uterus transplant is similar to many other organ transplants. A uterus is taken from a donor and transplanted into a recipient. There are two types of donors that can give a person a uterus — living and deceased:

• Living donors: A living donor can either be directed (known) or non-directed (anonymous). A directed donor is often a family member (a mother or sister) who chooses to give their uterus. These are called directed donors because their identity is known and there’s often a clear connection between the person giving the organ and the person receiving it. There are also anonymous donors (non-directed). These are people who decide that they want to donate their uterus, but they don’t have any one person in mind for their uterus.
• Deceased donors: In this case, the donor is someone who has died and who previously expressed a wish to give their organs to others. The donor typically has no relationship with the recipient in this type of organ donation.

Before they’re put on a waiting list to receive a uterus, a person undergoes in vitro fertilization (IVF) to create embryos. The embryos are frozen so when ready, a surgeon can put them into the transplanted uterus.

Unlike a traditional organ transplant, a uterus transplant isn’t meant to last forever. After one or two babies — or if there’s a concern for rejection or transplant complications — the person has a hysterectomy to remove the transplanted uterus. This is done to prevent long-term risks from the immunosuppressant medications people need to use after receiving a new organ. In any transplant, there’s always a worry that your body will “reject” the new organ and think of it as an invader.

Can uterine factor infertility be prevented?

There’s no way to prevent congenital uterine factor infertility because it happens before birth. And there isn’t a way to screen for it during pregnancy or know it will happen.

Preventing acquired uterine factor infertility involves discussions with your healthcare team before uterine surgery. It’s important to be honest with your healthcare provider about your wishes for future children and have a discussion with your provider about all options, including risks and benefits of all choices. However, it’s also important to remember that there are times when a hysterectomy is a life-saving surgery. In those cases, there may not be time to discuss the pros and cons.

Is there a cure for uterine factor infertility?

It depends on the cause. Your healthcare provider is the best person to discuss your prognosis.

What questions should I ask my healthcare provider about uterine factor infertility?

If you discover you don’t have a uterus as a young adult, you may have lots of questions. Some questions to ask your healthcare provider are:

• Can I still get pregnant?
• Will I ever get a period?
• How does not having a uterus affect other parts of my body?

People who have a hysterectomy are typically aware that removing their uterus will result in being unable to get pregnant in the future. But it may still be surprising, especially when the procedure is an emergency.

It’s still normal to have questions about your fertility. Some questions you may ask are:

• What are my options if I still want to have children?
• Will I get symptoms of my period?

Can you get pregnant without a uterus?

A uterine transplant may make it possible for a person to get pregnant without a uterus if they have ovaries, fallopian tubes, a cervix and a vagina. This procedure is uncommon, with only a handful of successful surgeries having been done.

In rare cases, a person can get pregnant after a hysterectomy. This can only occur if the person’s ovaries and fallopian tubes were left in place. If an ovary releases an egg, there’s a small chance an ectopic pregnancy can occur if sperm were to reach your abdomen.

Can an abnormal uterus cause infertility?

Yes, having an abnormal uterus can contribute to infertility. Many conditions can cause infertility, so it’s best to discuss your symptoms with a healthcare provider.

A note from Cleveland Clinic

It doesn’t matter what causes uterine factor infertility — getting a diagnosis can be challenging. But know that you’re not alone and that resources are available to help you understand and decide on the choices you have for expanding your family. While a uterine transplant may be the only way to carry a pregnancy for some people, many treatment options are available for people with infertility.