How does endometriosis affect fertility?

Endometriosis can make it harder to get pregnant. But more than 7 in 10 people with mild to moderate endometriosis conceive naturally. If you are having difficulty getting pregnant, treatments may be able to help. 

What is endometriosis?

Endometriosis is a condition where tissue similar to the lining of the womb (endometrium) grows outside the womb.

Endometriosis usually grows on the:

• lining of the pelvis and abdomen (the peritoneum)
• ovaries, where it can form cysts 
• fallopian tubes
• bowel
• bladder.

Endometriosis may grow in other parts of the body, such as surgery scars, the belly button and the chest. This is less common.

Endometriosis is a common condition, affecting up to 1 in 10 women and birthing people in the UK. You are more likely to have endometriosis if a close relative has been affected. 

Symptoms of endometriosis

Symptoms of endometriosis vary. Some people may not notice any at all while others have very severe pain. The most common symptoms are:

• painful, heavy or irregular periods
• pain in the lower abdomen, pelvis or lower back, which may be worse around ovulation time
• ongoing pelvic pain lasting 6 months or longer
• pain during or after sex
• pain when urinating (weeing) or pooing
• difficulty getting pregnant.

Less commonly reported symptoms include:

• bleeding from the bottom
• tiredness
• painful stomach scars or pain around the belly button, which can be worse during your period
• coughing blood, although this is very rare.

Some people might not know they have endometriosis until they have trouble getting pregnant and have tests. Others are in severe pain throughout their lives, and may have several rounds of surgery to manage the condition.

The amount of endometriosis tissue you have growing does not seem to affect how serious your symptoms are. You can have severe symptoms and only a few spots of tissue. Or you might have a lot of endometriosis but only a few symptoms. 

Keeping a pain and symptom diary can help when it comes to getting a diagnosis.

What is the difference between endometriosis and adenomyosis?

Adenomyosis is slightly different to endometriosis - it's a condition where the lining of the womb grows into the womb muscle. It can cause similar symptoms to endometriosis. 

These include painful heavy periods, pain during sex, pelvic pain and bloating. It can also make it harder to get pregnant.

Adenomyosis tends to affect people over the age of 30. Tests may help work out whether you have endometriosis or adenomyosis. 

Treatments to help manage adenomyosis symptoms are similar to treatments for endometriosis.  

How is endometriosis diagnosed?

The symptoms of endometriosis can be a lot like other conditions, so it can be hard to get a diagnosis. 

If you have 1 or more of the symptoms listed above, your doctor may suspect endometriosis. 

They will then offer to exam your abdomen and pelvis. 

The steps of diagnosis are:

1. The doctor will feel (palpate) your pelvis and abdomen for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. 
2. If your symptoms are severe or the exam shows signs of endometriosis, you may be referred for an ultrasound scan. This can be done through the abdomen or using a slim wand inserted into your vagina (transvaginal ultrasound).  
3. If the scan shows signs of endometriosis, or it does not but your symptoms are severe and persistent, your doctor may refer you for a procedure called a laparoscopy. This is a type of keyhole surgery that uses a small thin camera inserted near your belly button to look inside your abdomen. It's done under general anaesthetic. Laparoscopy can provide full details about where any endometrial tissue is, how big it is and far it has spread. Your surgeon may take samples of any tissue they find. 

Stages and severity of endometriosis 

Endometriosis treatment in the UK tends not to be based on grading, but on symptoms and your life priorities. 

This is because some treatments can act as contraceptives while surgery may help you to conceive. So, if you want to have a baby your treatment will be different to someone who does not. 

You may have heard of The American Society of Reproductive Medicine's staging system. This aims to rank the severity of endometriosis. It looks mainly at how much tissue has grown, and where it is. 

But the system does not reflect the amount of pain, the impact of other symptoms, or the risk of infertility. Someone in stage 1 could be in severe pain, while someone else in stage 4 might have no symptoms at all. The stages are:

• stage 1: minimal
• stage 2: mild
• stage 3: moderate
• stage 4: severe

What causes endometriosis?

The cause of endometriosis is still unknown. There are some theories, however.

Retrograde menstruation

Retrograde menstruation is when some of the lining of the womb flows backwards through the fallopian tubes rather than leaving the body as a period. 

It's thought to happen in most women and birthing people as a normal part of menstruation, but the body clears the tissue itself.  For some people, however, this tissue gets stuck to organs in the pelvis and abdomen, resulting in endometriosis. It is unclear why some people's bodies do not clear the tissue, although it could be linked to lower immunity.

Genetics

You're more likely to have endometriosis if someone in your family (especially a parent or sibling) has it. It can happen in people of all ethnicities, but you’re more likely to have endometriosis if you’re Asian than if you’re White, and least likely to have it if you’re African-Caribbean.   

Environmental

Certain toxins in the environment are thought to cause endometriosis, although this has not been proven.

Lymphatic or circulatory spread

This means some cells of the tissue travel around the body in the bloodstream or lymph nodes to different parts of the body, causing endometriosis growth.

How endometriosis affects fertility

Although endometriosis can affect your chances of getting pregnant, most people who have mild endometriosis are fertile. More than 7 in 10 people with mild to moderate endometriosis will get pregnant without treatment.

The exact nature of the link between infertility and endometriosis is unclear. It is not fully known how much a few spots of endometriosis affects fertility, but it may be more difficult to conceive if endometriosis is severe. 

Fertility may also be affected by where the endometriosis is, too. Even with severe endometriosis, natural conception is possible however.

If you have endometriosis and have been unable to get pregnant, make sure you get help and support. Speak to your doctor about being referred to a gynaecologist or a fertility specialist.

Treatment to help manage endometriosis

There is no cure for endometriosis, but there are treatments to help manage the condition. 

Managing the pain

You may take painkillers such as non-steroidal anti-inflammatories (NSAIDs like ibuprofen), paracetamol or codeine for endometriosis pain.

You should stop taking NSAIDs and reduce your use of codeine when you start to try for a baby, as they may have an effect on the baby if you conceive.

Acupuncture for endometriosis

Research has shown that acupuncture can help relieve period pain if you have endometriosis. This can help improve your wellbeing and quality of life.

Hormonal treatments

There are lots of different types of hormonal treatments that can be offered to those who have endometriosis. But as they either mimic pregnancy or menopause, they are not advised if you are trying to get pregnant. 

Vitamins and supplements

There is no good evidence that vitamins and supplements work for endometriosis symptoms. 

Some people say that vitamin B1 and magnesium supplements help relieve pain and improve the quality of their life. They can do no harm if you want to try them.

Treatment to help you get pregnant with endometriosis

Surgery to improve fertility with endometriosis

For those with fairly mild endometriosis, surgery can sometimes improve fertility. This option should be discussed with you if you cannot get pregnant and the condition is thought to be a possible reason for this.  

The most common type of surgery is laparoscopy, using the same keyhole procedure that you might have to diagnose your endometriosis. Your specialist will insert a thin tube with a camera at the end through a small cut made near your belly button and possibly around your bikini line too. 

Through this camera the surgeon can use scissors or a laser to destroy the tissue. You will be put to sleep under general anaesthetic so you will not feel any pain. This is an effective treatment, but the endometriosis can recur. 

The other type of surgery for endometriosis is a laparotomy. This  should only be done in very few cases as it's a bigger operation. It involves having a wider cut along the bikini line to remove the tissue.

Accredited Endometriosis Centres are able to carry out most surgery by laparoscopy. 

“I have had 2 laparoscopies in the past 10 years and have suffered for around 15 years. I was very nervous when we decided to try for a baby. After coming off the pill, trying to regulate my period and having no pain relief when my cycle was returning to its normal function wasn't easy. But it took us about a year to get pregnancy and I feel very lucky.”

Hannah

Does endometriosis grow back after surgery?

Endometriosis can come back after surgery. It's hard to say whether this is because the tissue was not fully removed in the first place, or whether it grew back. Even if endometriosis does come back, it may not cause symptoms. Endometriosis comes back for up to half of people 5 years after they’ve had surgery.

How long should I wait after a laparoscopy to try to conceive?

The latest research shows that it’s best to try to conceive within 1 year of having a laparoscopy, in case endometriosis comes back. If your endometriosis is mild, you may be able to wait 2 years. You should discuss the best time to get pregnant after a laparoscopy with your doctor, to be sure.

What are my chances of conceiving after successful surgery?

The best guide to the chance of natural conception is the endometriosis fertility index (EFI). Your surgeon will look at this after your operation and can explain it to you. 

The index looks at things such as how long you've been infertile, how widespread your endometriosis is, and where it is. It also looks at your age, and whether or not you’ve ever been pregnant in the past. 

Endometriosis and In vitro fertilisation (IVF)

Assisted reproductive techniques (ART) such as intrauterine insemination (IUI) or in vitro fertilisation (IVF) may be an option if you’re having trouble getting pregnant with endometriosis. The chances of success are lower if you have more severe endometriosis. 

The National Institute for Health and Care Excellence (NICE) says that IVF should be offered to women and birthing people  under the age of 43 who have been trying to get pregnant for 2 years or more. Some hospitals in the UK will only offer it to people up to the age of 40.

Read more about IVF.

Endometriosis, diet and trying to conceive

You may have heard that certain diets can help you conceive if you have endometriosis. 

There is not good evidence that any foods help with getting pregnant with endometriosis. NICE has recommended that more research into endometriosis and diet needs to be carried out.

I's a good idea to have a healthy, balanced diet if you're trying to conceive anyway. This means lots of fresh fruit and vegetables and plenty of water.  Eating well means you and your baby will be healthier. 

Endometriosis and problems in pregnancy  

Complications of endometriosis during pregnancy are rare, but there is an increased risk of placenta praevia (low-lying placenta), in which the placenta attaches lower down in the womb than usual. 

Endometriosis and miscarriage

It's unclear if having endometriosis means you have a higher risk of miscarriage.

Two large-scale studies showed different results. One showed that people who had surgery for their endometriosis were no more likely to have a miscarriage than those who had not. But another showed a link between having the condition and a higher chance of miscarriage.

There is a need for more research in order to help us work out whether endometriosis is linked to miscarriage or not.

Read more about the research into endometriosis and miscarriage.

Is endometriosis linked to ectopic pregnancy?

Research has found that having endometriosis may increase the risk of ectopic pregnancy. This could be because endometriosis scarring affects the ability of a fertilised egg to reach the womb, but more research is needed to confirm this.

Endometriosis and your mental wellbeing

Endometriosis can be a tough and life changing condition, with some women having several operations and struggling to conceive. It can have a huge impact on your mental wellbeing, which may be made even worse by the fact that it is difficult for other people, such as employers, to understand what you are going through.

If endometriosis is affecting your mental wellbeing, talk to a doctor.