Endometriosis: Symptoms, Diagnosis, and When to See a Gynecologist

Endometriosis is a long-term condition in which tissue similar to the lining of the womb (uterus) grows in other parts of the body, most often around the womb, ovaries and fallopian tubes [1][7][8]. This tissue can cause inflammation and scar tissue, and it can affect anyone who has or has had a womb, from their first period to menopause [1][10]. It can have a big impact on daily life, but there are treatments that can help [1].

Normal Period Pain or Something More?

Pain before or during a period is common. The NHS says period pain usually lasts up to 3 days and is often a normal part of the menstrual cycle, although it can sometimes be caused by a condition such as endometriosis [2]. The American College of Obstetricians and Gynecologists (ACOG) says common period pain tends to ease after the first few days [9].

Pain linked to a condition like endometriosis tends to behave differently. ACOG says it often gets worse over time, lasts longer than normal cramps, may start a few days before a period and may not go away when the period ends [8][9]. Signs your period pain may be more than usual include:

• pain severe enough to stop you doing your normal activities [1][6]
• period-related pain that affects your daily life and quality of life, which NICE, the body that writes clinical guidance in England, lists as a reason for a clinician to suspect endometriosis [3]
• pain that keeps getting worse from one year to the next [8]

Symptoms of Endometriosis

Symptoms depend partly on where the tissue is, and they vary a lot from person to person [7][8]. Commonly described symptoms include [1][3][7][8][10]:

• pain in the lower tummy, pelvis or back, which may change through your cycle or be there most of the time
• very painful periods
• heavy periods, which the NHS describes as needing to change pads or tampons every 1 to 2 hours, or bleeding through your clothes
• pain during or after sex
• pain when you poo or pee, often worse during a period, and sometimes bleeding from the bowel or bladder during a period
• bloating, constipation or nausea
• extreme tiredness
• difficulty getting pregnant
• low mood or anxiety

Rarely, endometriosis outside the pelvis can cause symptoms that come and go with your cycle in other places, such as pain or bleeding in the chest, coughing up blood, or pain in the tip of the shoulder [1][6].

Some people have no symptoms at all. ACOG says some only find out when they have trouble getting pregnant or have surgery for another reason [8].

Pain Does Not Show How Much Endometriosis There Is

The amount of pain does not always match how much endometriosis someone has. ACOG says a person can have slight pain with many patches of tissue, or severe pain with only a few [8], and NICHD, part of the U.S. National Institutes of Health, describes the same mismatch [11].

What Causes It and Who Is More Likely to Get It

The exact cause is not known [1][7][10]. ESHRE, the European Society of Human Reproduction and Embryology, says the most widely accepted theory is that period tissue travels backward through the fallopian tubes into the pelvis [6], while NICHD notes that no single theory explains every case [13].

Endometriosis is more likely if a close relative, such as your mother or sister, has had it [3][7][8]. ACOG lists other risk factors, including periods that started before age 10, cycles shorter than 26 days, never having had children, being underweight and differences in the shape of the womb or reproductive organs present from birth [8]. WHO and ESHRE both say there is no known way to prevent endometriosis [6][10].

How Common It Is

Estimates differ. WHO estimates that endometriosis affects about 10 percent of women of reproductive age worldwide [10], and ACOG gives a similar figure of about 1 in 10 [8]. ESHRE puts it at between 2 and 10 percent of women [6]. NICE points out that it is hard to know the true figure, because some people have no symptoms [4].

Endometriosis is not the same as polycystic ovary syndrome (PCOS), a different condition that also affects periods and fertility. For more on that condition, see PCOS: Symptoms, Diagnosis, and What to Ask Your Doctor.

Why Diagnosis Can Take Years

Getting a diagnosis can take a long time [1]. NICE says delays of 4 to 10 years can occur between first reporting symptoms and confirming the diagnosis [4], while WHO says the average time to diagnosis is between 4 and 12 years [10].

The reasons are partly medical. There is no blood test for endometriosis, it does not always show up on scans, and its symptoms overlap with other conditions such as irritable bowel syndrome, pelvic inflammatory disease, fibroids and urinary tract problems [1][7][8]. NICE adds that health professionals do not always recognize the importance of symptoms, and that some women wait to seek help because they see pelvic pain as normal [4]. NICE says delays can affect quality of life and allow the disease to progress [3].

How Endometriosis Is Diagnosed

Your Appointment

A GP or gynecologist will ask about your symptoms and whether close relatives have had endometriosis [1][8]. The NHS suggests giving as much information about your symptoms as you can [1], and NICE and ESHRE both suggest keeping a pain and symptom diary, questionnaire or app record to bring to appointments [3][6].

You may be offered a physical exam, which can include an internal vaginal exam [1][3]. The Royal College of Obstetricians and Gynaecologists (RCOG) says an internal exam should only happen with your consent, that you will be offered a chaperone, and that you can ask to stop at any time. RCOG adds: "If you choose not to be examined, they can discuss alternative options with you" [7]. NICE also says clinicians should take into account that people express pain in different ways [3].

Scans

NICE recommends offering a transvaginal ultrasound, a scan using a small probe placed in the vagina, to anyone with suspected endometriosis, even if their exam was normal [3]. ACOG calls it the best test for finding endometriosis and notes that teens or people who have experienced sexual trauma may be offered a different kind of ultrasound instead [8]. An MRI scan may be used to look for deeper endometriosis or endometriosis that involves the bowel or bladder [3][7][8]. For how these two scans compare, see Ultrasound vs MRI: When Each Is Used in Diagnosis.

A normal scan does not rule endometriosis out [3][6][7][8]. NICE also says the blood marker CA125 should not be used to diagnose it [3].

Laparoscopy

A laparoscopy is keyhole surgery under general anesthetic, in which a small camera is passed through a small cut in the tummy. It can find endometriosis and, in many cases, treat it at the same time [1][7][8]. A small sample of tissue (a biopsy) may also be taken [3].

Guidance differs on whether surgery is needed to confirm the diagnosis. ACOG says the only way to confirm endometriosis is with surgery [8], as does an older NICHD page [12], and NICE suggests considering a laparoscopy even when scans are normal [3]. The 2022 ESHRE guideline, however, says laparoscopy is no longer the diagnostic gold standard and recommends it mainly when scans are normal and treatment has not helped [5][6]. WHO says a clinical diagnosis may also be made from symptoms and scans, although surgery may sometimes be needed to confirm it [10]. ACOG, ESHRE and WHO all say treatment can start without surgery [6][8][10], and NICE says tests and referral can happen alongside first treatment [3].

When to See a GP or Gynecologist

Where to go first depends on where you live.

In the UK (NHS): the NHS says to see a GP if you think you might have endometriosis, if your symptoms are affecting your everyday life, work or relationships, or if treatment from a GP has not helped or your symptoms are getting worse [1]. Its period pain advice adds seeing a GP if your periods become more painful, heavier or irregular, if period pain stops your usual activities, if you have pain during sex or when peeing or pooing, if you bleed between periods, if you notice a change in how much you pee or poo, if your tummy is swollen, or if you have lost your appetite or are losing weight without trying [2]. The NHS advises asking for an urgent GP appointment or contacting NHS 111 if your pelvic pain or period pain is severe or worse than usual, and the things you have tried to ease it have not helped [2].

In England (NICE): a GP should refer you to a gynecology service if first treatment has not worked or is not suitable, if symptoms affect your daily life, or if symptoms keep coming back [3]. NICE says people with suspected deep endometriosis, an endometriosis cyst on the ovary, or endometriosis outside the pelvis should be referred to a specialist endometriosis service, and young people aged 17 and under to a gynecology service for young people or an endometriosis center [3]. A referral may still be needed even if a scan was normal [3].

In the US (ACOG): an obstetrician-gynecologist (ob-gyn) is the first step for evaluation, and ACOG encourages telling your ob-gyn about painful periods [8][9].

In Europe (ESHRE): if one or more symptoms cause you severe pain, ESHRE suggests seeing your family doctor and asking them to consider endometriosis [6].

How Endometriosis Is Treated

There is no cure for endometriosis, but treatment can help manage symptoms such as pain [1][6][8][10]. Medicines and other treatments a clinician may discuss are often tried first, and some people need surgery, or more than one kind of treatment at the same time [1][8][10]. Your doctor will talk to you about the risks and possible side effects of each option [1].

The right choice depends on your symptoms and how severe they are, where the endometriosis is, whether you want to get pregnant, your own preferences and what is available [6][7][8][10]. NICE says treatment should be based on your symptoms, preferences and priorities rather than the stage of the disease [3]. Medicines and other treatments a clinician may discuss can be tried before a diagnosis is confirmed [3][8]. ESHRE and WHO note that symptoms often come back when treatment stops [6][10].

Surgery. Patches of endometriosis or cysts can be removed, usually by keyhole surgery [1][7][8]. Surgery may relieve symptoms only partly or for a time, and some people need more than one operation [1][6]. Removing the womb (a hysterectomy) may be considered when other treatments have not worked and no future pregnancy is planned, but it is not necessarily a cure [1][7][10].

Pain services and other support. People with severe or complex symptoms may be referred to a specialist endometriosis service or a pain management team, which may include physiotherapists and psychologists [1][3][7]. Views on physiotherapy and talking therapy differ. WHO says pain management that includes physiotherapy and cognitive behavioral therapy (CBT) can help reduce pain and improve quality of life [10], while the 2022 ESHRE guidance says there is not enough evidence to make a recommendation on physiotherapy, exercise or psychological treatment [6].

Complementary treatments. NICE says the available evidence does not support the use of traditional Chinese medicine or other Chinese herbal medicines or supplements for treating endometriosis [3]. ESHRE says there is no good proof that complementary treatments reduce pain and suggests telling your doctor if you use any [6].

Endometriosis and Fertility

ACOG describes endometriosis as a common cause of infertility [8], but most people with it can still get pregnant. ESHRE estimates that 60 to 70 percent can conceive without treatment [6], although RCOG notes it can take longer or be harder for some [7]. If you are having trouble getting pregnant, your doctor may refer you to a fertility specialist [1][7]. ESHRE also says pregnancy does not cure endometriosis [6]. For guidance on timing, see When to See a Fertility Doctor, and for an overview of the options, see Understanding Fertility Treatments: From Initial Testing to IVF and Advanced Reproductive Care.

Living With Endometriosis

Endometriosis can affect physical health, sex, mood, relationships and work or school over many years [1][3][10]. WHO lists pain, tiredness, depression, anxiety and social isolation among the ways it can lower quality of life [10]. The NHS says support can include advice on managing long-term pain and tiredness, and mental health support for low mood or anxiety [1], and RCOG suggests speaking to your healthcare team if you feel anxious or worried [7]. Patient support groups can also help [8][10].

Symptoms usually stop or improve after menopause, although some people still have symptoms afterward [1][6][8].

Conclusion

If period pain is stopping you doing normal things, or keeps getting worse, it is worth getting checked. There is a clear path from a first visit to a GP or ob-gyn, through tests, to a specialist if needed [1][3][8]. If one approach does not help, it is reasonable to go back and ask about other options or a referral [1][3].

Medical Disclaimer

This article is for general information and does not replace advice from a qualified health professional. If you think you need urgent medical care, get emergency help straight away.