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What are the symptoms of endometriosis?

What are the symptoms of endometriosis?

Endometriosis is a common long-term condition that affects women. With endometriosis, cells that are like the lining of the womb (uterus) grow outside the womb, such as on other reproductive organs like the Fallopian tubes and the ovaries.

For the purpose of this article 'girls, females, or women' are those individuals assigned as female at birth. It is not intended to exclude or dismiss individuals who do not identify as female.

Endometriosis is a common condition that affects around one in 10 women.

Typical symptoms of endometriosis include:

  • Period pain - mild menstrual cramping is usually considered normal, but endometriosis causes more severe pains before, during, and after periods.
  • Long lasting (chronic) pelvic pain (lower abdomen/tummy) - can happen with a period or can be constant.
  • Pain during or after sex - can be felt deep inside during penetrative sex - although some women experience this differently.
  • Pain when pooing (opening bowels) - usually worse during a period.
  • Pain when weeing - usually worse during a period.
  • Fertility problems.

Endometriosis can be difficult to diagnose and symptoms can also be caused by other conditions, and can vary a lot from person to person.

If you think you may have endometriosis, find out what to do here. This will tell you if you need to see a doctor and how it is treated.

In this series of articles centred around endometriosis you can read about endometriosis symptoms, endometriosis treatment, and endometriosis causes - all written by one of our expert GPs.

The rest of this feature will take an in-depth look at the symptoms of endometriosis as, at Patient, we know our readers sometimes want to have a deep dive into certain topics.

Symptoms of endometriosis

Endometriosis is caused by tissue similar to the lining of the uterus (womb), that grows outside of the uterus. Endometriosis tissue, like the normal uterus lining, bleeds during every menstrual cycle. So, endometriosis symptoms are typically worse at the time of a period.

Many women find the pain starts two or three days before their period starts, and improves a few days after starting their period. Cyclical pain that is closely linked to the menstrual cycle can be a sign of endometriosis. However, some women with endometriosis, especially if it's more severe, experience symptoms between periods or all the time.

Some people might get one or two symptoms, whereas others may get many different symptoms from endometriosis.

Common endometriosis symptoms include:

Painful periods

Most women experience period pain at some point in their lives. For many people, these pains are mild can be managed with over-the-counter relief if needed. Some women though, experience period pain that is more severe, such as pain that prevents them doing their day-to-day activities or that can't be controlled with over-the-counter pain relief. Severe period pain can have a huge effect on women's quality of life. Endometriosis is one of the causes of unusually severe period pain.

Endometriosis-related period pain can also have a different timing to normal period pain. Typical period pain often starts on the first day of your period and is worst when the period is heaviest. Whereas, endometriosis-related pain might start several days before the period does - this isn't always the case though.

Chronic pelvic pain

Endometriosis is one of the causes of long lasting pelvic pain - below the belly button and in between the hips - which has usually lasted for six months or longer.

Chronic pelvic pain affects people differently - some have continuous, severe pain, for others it comes and goes. Cyclical pain is worse during or just before a period. The pain might feel dull, sharp, or like a feeling of pressure.

Pain during or after sex

Endometriosis is one of the causes of pain during or after sex (dyspareunia). Endometriosis typically causes pain felt on deep vaginal penetration. Some people feel pain during sex, and others only afterwards. It's possible to get pain of the vulva or vaginal entrance during sex, but this is more likely to be due to other conditions.

Sometimes, painful sex is worse around the time of a period. Some women find that sex positions with shallower penetration - such as spooning - aren't painful. Other forms of sex - such as oral sex and foreplay - can be pleasurable for both people without causing pain.

Painful bowel movements

Endometriosis can affect the bowel - the last part of the gut - causing pain when pooing. This is typically worse when you get your period. Sometimes, endometriosis in the bowel can bleed into the gut, causing blood in the poo. There are lots of other causes of bleeding in poo though - doctors will usually want to look for other causes before putting it down to endometriosis.

Bladder and urine problems

Endometriosis can also affect the bladder. Again, symptoms are usually worst around the time of a period. Problems in endometriosis can include pain when the bladder is full, burning or stinging when weeing, feeling the need to pass urine suddenly, and, sometimes, blood in the urine. Again, doctors usually need to look for other causes first before putting this down to endometriosis.

Fertility problems

Women with endometriosis are more likely to have difficulty getting pregnant. This doesn't affect everyone though and most women with endometriosis are still able to get pregnant naturally. However, this might be difficult for some, and they might need to have treatments such as surgery or fertility treatment.

Mental health issues

Women with endometriosis are more likely to develop anxiety and depression due to the effects of living with a long-term, painful condition. Women with endometriosis often live with symptoms for a long time before the diagnosis is made, and may have experienced their symptoms being dismissed or not taken seriously.

Uncommon symptoms of endometriosis

Endometriosis can cause other symptoms as well, though this is rarer:

  • Some women have endometriosis symptoms but don't experience pain. Others might have no symptoms at all. Around 25% of women with endometriosis don't have symptoms.
  • Bowel symptoms of endometriosis can be similar to irritable bowel syndrome (IBS) - these can include tummy bloating, constipation, and diarrhoea. However, it's possible to have both endometriosis and IBS together - women with endometriosis are around three times more likely to have IBS than women without it.
  • Areas of endometriosis are usually found on the ovaries, Fallopian tubes, or other organs in the pelvis - it can also affect other organs and other areas of the body. Examples of this are rare, but have been reported:
    • Area of endometriosis can irritate the sciatic nerve, causing symptoms of sciatica - pain going from the lower back, down the back of the leg. This is called sciatic endometriosis.
    • Endometriosis can develop in a surgical scar - for example, a Caesarian section scar, causing cyclical scar pain.
    • Endometriosis can, rarely, affect the chest and lungs - it's thought this causes a very rare condition called catamenial pneumothorax, where women develop repeated episodes of a collapsed lung during menstruation.
    • Endometriosis affecting the diaphragm (the large muscle below the lungs) - can cause pain felt in the upper part of the stomach, the chest, or the shoulders.
    • In very rare and unusual cases, endometriosis cells have been found in the liver, spleen, pancreas, gallbladder and even the eyes, brain, and nose.

What does endometriosis feel like?

Everyone experiences endometriosis differently. Some people have no symptoms, some have manageable symptoms and others have very severe symptoms which substantially affect their lives. Examples of women's experiences with endometriosis include:

  • Severe period pain - sometimes incapacitating or debilitating, and substantially interfering with daily life.
  • Feeling like the pelvic area is being pinched, or pulled downwards.
  • Having pelvic pain that feels sharp and stabbing, like someone squeezing your insides, or feels searing hot.
  • Feeling a strong, sharp, deep pain during sex, or feeling a burning-type pain during or after sex.

When to see a doctor for endometriosis symptoms

You should speak to a doctor if you think you might have endometriosis. Your doctor should listen to your experiences, and is likely to ask you further questions to try and work out what is going on. They may want to examine your tummy and may also ask to do an internal examination (pelvic exam). They might suggest some further tests as well.

Endometriosis symptoms can also be caused by lots of other conditions, and it can take some time - and several visits to the doctor - to finally reach the diagnosis.

How is endometriosis diagnosed?

An internal (pelvic) examination can sometimes show signs of endometriosis, but it can also be normal.

Initial tests usually include a pelvic ultrasound scan to detect ovarian cysts caused by endometriosis - also called chocolate cysts - and, sometimes, deep endometriosis in other areas, like between the vagina and the rectum. It can also look for other conditions affecting the womb (uterus) and ovaries. However, some types of endometriosis can't be seen on an ultrasound, so a normal ultrasound doesn't rule out endometriosis.

Sometimes - usually when seeing an endometriosis specialist - a pelvic MRI scan might be suggested to look for signs of deep endometriosis such as in the bladder, bowel, or the ureters - the tubes that join the kidneys to the bladder. Again, though, some types of endometriosis can't be seen on an MRI scan, and a normal MRI scan doesn't rule out endometriosis.

The only definitive way to diagnose endometriosis is with an operation, called a laparoscopy. A laparoscopy is a type of keyhole surgery, where, whilst asleep under anaesthetic, a telescopic camera is inserted through a cut in the tummy. This allows the surgeon to look inside the abdomen and pelvis, and to see any areas of endometriosis on the inside. They can also take samples (biopsies) to be looked at under a microscope to help confirm the diagnosis. It can also be possible to perform surgery to remove areas of endometriosis during this operation as well.

A laparoscopy is invasive and has some risks. Whilst it's a useful test for some women, it's also possible to treat endometriosis even without a definitive diagnosis. In many cases, doctors might recommend initial tests, such as a pelvic ultrasound, and then suggest trying treatment for endometriosis even if these tests are normal. This might include hormonal treatment - usually contraceptives or birth control pills - and medicines to relieve pain. If treatment is successful at controlling symptoms, further tests may not be necessary.

Doctors typically only recommend surgery, such as a laparoscopy, if:

  • Endometriosis symptoms are severe.
  • Endometriosis symptoms haven't improved, or have reappeared, despite hormone therapy.
  • There are signs or symptoms that endometriosis is affecting the bowels, bladder, or ureters.
  • There are signs of an endometriosis cyst (endometrioma) on an ovary.
  • Endometriosis is thought to be causing fertility problems.
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