What is endometriosis?
Endometriosis is a condition where tissue that is similar to the lining of the womb starts to grow in other parts of the body. For example, in the ovaries and fallopian tubes.
Endometriosis is a long-term chronic condition that can cause various symptoms. It may also make it harder to get pregnant.
This condition can affect you at any age, but it usually affects women and birthing people from puberty to menopause.
Endometriosis can be found:
- on the ovaries, where it can form cysts
- in the peritoneum (the lining of the pelvis and abdomen)
- in or on the fallopian tubes
- on, behind or around the womb
- in the area between the vagina and the rectum
- on the bladder and bowel.
Occasionally, endometriosis can be found outside of the pelvis. Endometriosis may make it harder to get pregnant.
How common is endometriosis?
Endometriosis is a common condition, affecting around 1 in 10 (10%) of women and birthing people.
You are more likely to have endometriosis if you:
- have a mother or a sister who had/have it
- have any anomalies in the female reproductive tract, which stops menstrual blood (your period) from coming out of the vagina
- have not been pregnant before
- are a smoker
- are white
- have a low body mass index (BMI)
- went through puberty early (before 11 years)
- have another type of auto immune disease.
Causes of endometriosis
We don’t know exactly what causes endometriosis, but it may be related to:
- genetics – the condition tends to run in families
- a problem with the immune system (the body’s way of protecting us against disease and infection)
- endometrium cells (tissue from the womb) spreading through the body in the bloodstream or lymphatic system .
- retrograde menstruation. This is when the womb lining (endometrium) flows backwards through the fallopian tubes and into the abdomen, instead of leaving the body as a period.
Symptoms of endometriosis
Endometriosis symptoms can vary. Some people will have severe symptoms and others will have mild signs. Some people don’t have any symptoms.
The most common symptoms are:
- pain in your lower stomach or back (pelvic pain)
- period pain that stops you doing your day-to-day activities
- deep pain during or after sex
- pain when weeing or pooing during your period
- feeling sick, constipation, diarrhoea, or blood in your pee or poo during your period
- difficulties getting pregnant (also known as infertility)
- heavy periods.
Endometriosis can also cause irregular periods. This will not stop you from getting pregnant, but it can make it more difficult to know when you are more likely to get pregnant. Find out more about understanding your menstrual cycle.
Endometriosis can cause pain that occurs in a regular pattern, becoming worse before and during your period. Some women experience pain all the time but for others it may come and go.
How endometriosis is diagnosed
Speak to your GP if you have symptoms of endometriosis. It’s also a good idea to speak to your GP for advice if you know you have endometriosis and you want to start trying to get pregnant.
It can be hard to diagnose the condition because symptoms vary and there are other conditions that cause similar symptoms. Endometriosis UK has a pain and symptoms diary that you can use.
Your GP may recommend treatments if they think you have endometriosis. Tell them if you want to get pregnant as some treatments are not suitable.
If your GP suspects endometriosis you may also be offered for further tests including:
- an ultrasound scan
- laparoscopy (see below).
A laparoscopy is the only way to know for sure if you have endometriosis.
None of these tests affect your ability to get pregnant.
Your healthcare professional may suggest treating the endometriosis at the time of your first laparoscopy. They should tell you more about the risks and benefits of a laparoscopy beforehand.
There is no cure for endometriosis but there are treatments to help manage the condition. Your healthcare professional will talk to you about the options available.
Treatment is your choice, and it's important that your healthcare practitioner knows what's important for you when discussing treatment options. You may not need treatment if your symptoms are mild.
The treatment you choose may depend on what your priorities are. Some treatments stop you getting pregnant now or can affect a pregnancy.
If you are struggling to get pregnant, a fertility specialist should be involved in your care and you may be offered other fertility tests and treatments, such as IVF.
There are several medications you can take to ease any pain. These include over-the-counter medications and any prescribed by your healthcare professional. You may be referred to a specialist pain management team if your pain is severe.
Some painkillers, such as ibuprofen are not usually recommended in pregnancy. Codeine can be taken in pregnancy, although long-term use is not recommended.
If you are trying to get pregnant, talk to your pharmacist or other healthcare professional before taking any medication.
Find out more about drugs and medicines in pregnancy.
Hormone treatment works by reducing or stopping ovulation (the release of an egg from the ovary).
Most hormone treatments are contraceptive, such as the pill or implant. These will stop you from getting pregnant, so they are not recommended if you want to have a baby now. Hormone treatments do not affect your ability to get pregnant in the future.
Some progestogens or gonadotrophin-releasing hormone agonists (GnRHas) can be used. GnRH analogues are modified versions of a naturally occurring hormone known as gonadotropin releasing hormone (GnRH), which helps to control the menstrual cycle. GnRHas can be very effective but can cause menopausal symptoms such as hot flushes. This is temporary and your periods will return after treatment is stopped.
Surgery can be used to remove or destroy areas of endometriosis tissue, which can help improve symptoms. There are different kinds of surgery for endometriosis. What is best for you will depend on where the tissue is and how much there is.
Surgery may improve your chances of getting pregnant.
Like any surgery, there are also some risks to these procedures, such as infection.
Your surgeon can tell you more about the possible risks and benefits of having surgery. This should include how the procedure may impact your fertility.
During laparoscopy, also known as keyhole surgery, small cuts are made in your stomach so the endometriosis tissue can be destroyed or cut out.
This procedure is carried out under general anaesthetic, so you won’t feel any pain. This kind of surgery can help with your symptoms and sometimes help improve fertility if you are having problems getting pregnant. But problems can come back, especially if some endometriosis tissue is left untreated.
“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.”
This is an operation that requires a cut in the stomach so that areas affected with endometriosis can be removed.
If you have severe endometriosis, you will be referred to an endometriosis specialist centre where a specialist team that could include a gynaecologist, a bowel surgeon, a radiologist and specialists in pain management will discuss your treatment options with you.
How long should someone wait until after a laparoscopy to try to conceive?
The time it takes to recover from laparoscopy is different for everybody. It depends on factors such as the reason why it was done, your general health and if any complications develop.
Your surgical team can give you more information.
What are my chances of getting pregnant after surgery for endometriosis?
The best way of assessing your chances of getting pregnant after surgery is the endometriosis fertility index (EFI). This considers factors such as:
- length of infertility
- how bad the endometriosis is and whether the fallopian tube is affected
- your age
- whether you have been pregnant before.
This should be calculated after the operation by the surgeon.
Other treatment options
Exercise may improve your wellbeing and improve some symptoms of endometriosis.
There is not enough evidence that these therapies help with pain or with getting pregnant. But some women find that they help reduce pain and improve their quality of life. These include:
- transcutaneous electrical nerve stimulation (TENS)
- vitamin B1 and magnesium supplements
- traditional Chinese medicine
- herbal treatments
Endometriosis and IVF
NICE recommends that you should be offered IVF if you have mild endometriosis and have been trying to get pregnant naturally for 2 years.
People will moderate to severe endometriosis tend to have a lower chance of getting pregnant with IVF.
Find out more about IVF.
Endometriosis, your diet and getting pregnant
There is no food that is scientifically proven to help you get pregnant with endometriosis, but some dietary changes may help you manage your symptoms. The Royal College of Obstetricians & Gynaecologists says that some people find that cutting out certain foods such as diary or wheat products help.
Endometriosis during pregnancy
Having endometriosis in pregnancy is not considered high-risk, but tell your midwife about your condition at your booking appointment. You can talk to your midwife or doctor at any time if you have any concerns during pregnancy.
Some medical research has found that having endometriosis increases the risk of placenta previa. This is when the placenta attaches lower down in the womb and covers the cervix (entrance to the womb). If this happens, you may be recommended to give birth earlier than your due date. You may also be recommended to have a caesarean section.
Some research has also found that having endometriosis increases the risk of an ectopic pregnancy. This may be because endometriosis scarring may interfere with the ability of a fertilised egg to reach the uterus. But more research is needed to confirm this.
The pain caused by endometriosis may get better during pregnancy.
Endometriosis and miscarriage
Two large studies have compared pregnant women with endometriosis to those without the condition. They found that women with endometriosis are at higher risk of miscarrying after getting pregnant naturally compared to those without.
But there is still not enough evidence to prove that having endometriosis increases the risk of miscarriage.
Other research has focused on whether treating endometriosis can reduce the risk of miscarriage. One study has shown limited evidence that having laparoscopic surgery to treat mild and moderate endometriosis can reduce pain and the risk of miscarriage.
More high-quality research is needed to find out if there is a clear link between endometriosis and miscarriage.
Endometriosis and your mental wellbeing
Endometriosis can affect your mental wellbeing, as well as your physical health. This may get worse with the extra stress of trying to get pregnant.
It may help to talk to people close to you. Having a support network of people close to you who you trust and can talk to will be very helpful during pregnancy and after. It will also help your keep stress levels down.
Talk to your GP if you are struggling with your emotions. They can help you find the right treatment and support. This may include medication, such as antidepressants or talking therapies. If you live in England you can also refer yourself for talking therapy.
You can also get more support from Endometriosis UK.
Find out more looking after your mental health while planning a pregnancy.