Endometriosis is a long-term condition where tissue similar to the lining of the womb grows outside the womb, usually around the ovaries, fallopian tubes and pelvis, causing painful periods, pelvic pain and sometimes difficulty getting pregnant. It affects about 1 in 10 women of reproductive age, yet the WHO says diagnosis takes 4 to 12 years on average, and Asia-Pacific experts say one reason is that severe period pain is treated as “normal”. There is no cure, but painkillers, hormone treatments and surgery can control symptoms. If period pain stops you from going to work or school, or painkillers do not help, see a doctor.
Apa itu endometriosis? (endometriosis maksud)
According to the NHS, endometriosis is where cells similar to those in the lining of the womb (uterus) grow in other parts of the body. It is often found around the womb, such as on the ovaries, fallopian tubes and the lining of the pelvis, and sometimes affects the bladder and bowel. Sometimes it is found outside the pelvis, such as in the chest.
The WHO describes it as a chronic disease that causes inflammation and can affect women from their first period to the menopause, regardless of ethnic origin or social status. It affects an estimated 10% (190 million) of women of reproductive age worldwide. In Chinese, endometriosis is called 子宫内膜异位症.
Symptoms happen when patches of endometriosis break down and bleed but the blood cannot leave the body, according to the NHS. The WHO explains that this leads to inflammation and scar tissue.
Simptom endometriosis
According to the NHS, the main symptoms are:
- severe period pain that stops you from doing your normal activities;
- heavy periods, where you need to change your pads or tampons every 1 to 2 hours, or you may bleed through to your clothes;
- pain in your lower tummy and back (pelvic area) at any time;
- pain when you poo or pee, which the RCOG notes is often worse during your period;
- pain during or after sex;
- extreme tiredness (fatigue);
- difficulty getting pregnant;
- low mood or anxiety.
The WHO adds bloating and nausea to the list. Symptoms depend on where the endometriosis is, and the RCOG says some women have no symptoms at all. Heavy periods can also lead to iron deficiency; see our guide to kurang darah.
Senggugut biasa or endometriosis?
Some period pain is common and often a normal part of the menstrual cycle, but endometriosis pain is easily dismissed as normal. Based on NHS guidance on period pain and on endometriosis:
| Usually ordinary period pain | Could be endometriosis: see a doctor |
|---|---|
| Cramps in your tummy that may spread to your back and thighs, eased by a heat pad, a warm bath, gentle exercise, or paracetamol or ibuprofen | Pain so severe it stops you from doing your usual daily activities, or that painkillers do not help |
| Pain around the start of your period, usually lasting up to 3 days | Pelvic or lower back pain at other times of the month, or periods that become more painful over time |
| — | Heavy bleeding needing a pad change every 1 to 2 hours, or bleeding through your clothes |
| — | Pain during or after sex, or when you poo or pee |
For tips on everyday cramps and when they are not normal, see our guide to senggugut.
Punca and who is at risk
The NHS and WHO say the cause of endometriosis is not known. According to the RCOG, there are several theories, but none has been proven. What is known:
- You are more likely to develop endometriosis if your mother or sister has had it (RCOG).
- Emerging research links endometriosis to the immune system; people with endometriosis have higher rates of conditions such as lupus and inflammatory bowel disease (WHO).
- There is no known way to prevent endometriosis, but early diagnosis and good care may slow its progression and reduce long-term symptoms (WHO).
Endometrioma: the “chocolate cyst” (cyst coklat)
According to the RCOG, when endometriosis grows on the ovaries it can form cysts, often called “chocolate cysts” or endometriomas. A transvaginal ultrasound scan may show whether there are cysts on your ovaries.
Not every ovarian cyst is an endometrioma: most ovarian cysts are harmless functional cysts that go away on their own (see our guide to cyst ovari). For endometriomas, the ESHRE guideline advises:
- if surgery is done, surgeons should remove the cyst wall (cystectomy) rather than only drain it;
- surgery should be done with special care to protect the ovary, because it can reduce your ovarian reserve (egg supply);
- surgery is not routinely recommended before IVF, because of this possible effect on ovarian reserve.
Endometriosis vs adenomyosis
Adenomyosis is a related condition that is often confused with endometriosis. According to the NHS:
| Endometriosis | Adenomyosis | |
|---|---|---|
| What happens | Tissue similar to the womb lining grows outside the womb, such as on the ovaries or fallopian tubes | The lining of the womb grows into the muscle wall of the womb |
| Who it usually affects | From puberty to the menopause | Usually women over 35; more likely if you have given birth |
| Main symptoms | Severe period pain, heavy periods, pelvic pain, pain with sex, pain when you poo or pee | Painful, heavy periods, pelvic pain, bloating, pain with sex |
| Tests | Ultrasound, MRI; laparoscopy can confirm | Ultrasound, MRI |
The NHS notes that you have a higher chance of adenomyosis if you have endometriosis, and that the symptoms of both can be similar to fibroids.
How endometriosis is diagnosed (ultrasound, MRI, laparoscopy)
Diagnosis is often slow. The WHO says the average time to diagnosis is between 4 and 12 years. An Asia-Pacific expert panel, which included specialists from Universiti Malaya and the Endometriosis Association of Malaysia (MyEndosis), reported delays of about 6 to 8 years and linked them to poor awareness, treating pain as normal, cultural attitudes towards periods and misdiagnosis.
The RCOG says endometriosis is not straightforward to diagnose because there is no blood test, it does not always show up on scans, and symptoms overlap with conditions such as irritable bowel syndrome and pelvic inflammatory disease. Your doctor may:
- ask about your symptoms and whether close relatives have endometriosis;
- offer an internal (vaginal) examination, with a chaperone;
- arrange a transvaginal ultrasound, which may show cysts or other signs of endometriosis;
- arrange an MRI scan, useful if endometriosis may involve the bowel or bladder;
- suggest a laparoscopy (keyhole surgery), where a camera is passed through a small cut in your tummy; this can confirm endometriosis, and areas can sometimes be removed at the same time.
Two points are important. First, a normal ultrasound or MRI does not rule out endometriosis (RCOG, ESHRE). Second, the ESHRE guideline advises that blood tests for biomarkers, such as CA-125, should not be used to diagnose it. You do not always need surgery before starting treatment: the WHO and an Asian expert consensus say doctors can make a clinical diagnosis from symptoms and scans and begin treatment.
Rawatan endometriosis
According to the NHS, there is currently no cure for endometriosis, but treatment can help manage symptoms such as pain. The choice depends on your symptoms, how much endometriosis you have, whether you want to get pregnant and your preferences.
| Treatment | What it involves |
|---|---|
| Painkillers | Paracetamol, or anti-inflammatory painkillers such as ibuprofen (NHS, WHO) |
| Combined hormonal contraception | The pill, patch or vaginal ring (WHO, ESHRE); the RCOG says the pill or patch can be taken continuously, without the usual break, to stop periods or make them lighter |
| Progestogens | Tablets, injection, implant or a hormone-releasing intrauterine system (IUS); an Asian expert consensus considers oral progestogens such as dienogest a first-line option |
| GnRH agonists | Injections that cause a temporary menopause; usually second-line and given with add-back hormone therapy to reduce side effects (RCOG, ESHRE) |
| Surgery | Usually keyhole surgery to remove areas of endometriosis or ovarian cysts; more surgery may be needed if symptoms return or scarring (adhesions) forms (NHS) |
| Hysterectomy | Removal of the womb, with or without the ovaries; the ESHRE guideline says it will not necessarily cure the symptoms or the disease |
The RCOG advises giving hormone treatment at least 3 to 6 months to work. Most hormone treatments are contraceptive, so you cannot get pregnant while using them, but they do not affect your fertility in the long term. The WHO notes that physiotherapy and cognitive behavioural therapy (CBT) may also help reduce pain and improve quality of life.
The ESHRE guideline says there is not enough evidence to recommend any specific non-medical treatment, such as a particular diet, traditional Chinese medicine or acupuncture. It suggests aiming for a healthy lifestyle and diet, with less alcohol and regular physical activity.
Endometriosis and pregnancy
According to the RCOG, many women with endometriosis are able to conceive naturally, although for some it can take longer or be more difficult. The WHO says that among women with infertility, 25% to 50% have endometriosis.
- You will not be given hormone treatment while you are trying to get pregnant (NHS). The ESHRE guideline says hormone suppression does not improve fertility.
- If you have difficulty getting pregnant, your doctor may refer you to a fertility specialist. Options include ovulation induction, intrauterine insemination (IUI) and IVF (WHO).
- The ESHRE guideline advises against getting pregnant only to treat endometriosis, as pregnancy does not always improve symptoms.
- There may be a higher risk of miscarriage in the first trimester and of ectopic pregnancy, but ESHRE says complications are rare and this is not a reason for extra monitoring in pregnancy or to avoid pregnancy.
If you are trying to conceive, see our guide to tanda-tanda mengandung.
Living with endometriosis
The NHS says endometriosis can have a big impact on your life, with long-lasting symptoms that can affect your daily life, work and relationships for many years. Symptoms usually stop after the menopause, although some women still have them.
In a Malaysian survey of 166 women with endometriosis at a university hospital, 96 reported poor to very severe problems with marital satisfaction, and these were closely linked to sexual difficulties. If sex is painful, tell your doctor; it is a recognised symptom and can be treated.
The NHS says support can include advice on managing long-term pain and fatigue, and mental health support if you have low mood or anxiety. If you feel persistently low, see our guide to kemurungan for where to get help in Malaysia.
When to see a doctor
According to the NHS, see a doctor if:
- you think you might have endometriosis;
- your symptoms are affecting your everyday life, work and relationships;
- you have had treatment but your symptoms do not get better, or get worse.
The WHO says a careful history of your periods can help with diagnosis, so it may help to note when your pain and bleeding happen across your cycle before you see the doctor. If treatment is not working or your symptoms are severe, ask about referral to a gynaecologist or a specialist endometriosis service.
Frequently asked questions (FAQ)
Apa maksud endometriosis (what is endometriosis)?
Endometriosis is a long-term condition where tissue similar to the lining of the womb grows outside the womb, usually in the pelvis around the ovaries, fallopian tubes and the lining of the pelvis. According to the WHO, it affects about 10% (190 million) of women of reproductive age worldwide. It can cause painful periods, pelvic pain, pain during sex and difficulty getting pregnant.
What are the tanda and simptom endometriosis?
According to the NHS, symptoms include severe period pain that stops you from doing your normal activities, heavy periods, pain in your lower tummy and back, pain when you poo or pee, pain during or after sex, extreme tiredness and difficulty getting pregnant. Some women have low mood or anxiety, and some have no symptoms at all.
Is endometriosis the same as adenomyosis?
No. According to the NHS, in adenomyosis the lining of the womb grows into the muscle in the wall of the womb, while in endometriosis tissue similar to the womb lining grows in other places, such as the ovaries or fallopian tubes. The symptoms can be similar, and you have a higher chance of adenomyosis if you have endometriosis.
What is a chocolate cyst (cyst coklat)?
When endometriosis grows on the ovaries it can form cysts, often called chocolate cysts or endometriomas, according to the Royal College of Obstetricians and Gynaecologists (RCOG). A transvaginal ultrasound scan may show them. If surgery is needed, the ESHRE guideline advises removing the cyst wall rather than only draining it, while taking care to protect the ovary.
Can a woman with endometriosis get pregnant?
Yes, many can. The RCOG says many women with endometriosis are able to conceive naturally, although for some it can take longer or be more difficult. If you are having difficulty getting pregnant, your doctor may refer you to a fertility specialist; options include ovulation induction, IUI and IVF, according to the WHO.
Can endometriosis be cured?
There is currently no cure, according to the NHS and the WHO, but treatment can help manage symptoms such as pain. Options include painkillers, hormone treatments and surgery. Even a hysterectomy will not necessarily cure the symptoms or the disease, according to the ESHRE guideline. Symptoms usually stop after the menopause, although some women still have symptoms.
Does endometriosis cause cancer?
The ESHRE guideline says endometriosis is not associated with a significantly higher risk of cancer overall. It is linked with a higher risk of some cancers, including ovarian cancer, but the increase in absolute risk is low, and no extra cancer screening is recommended beyond the usual national screening programmes.
Disclaimer
This article is for general information only and is not a substitute for advice, diagnosis or treatment from a doctor. Health supplements are not intended to diagnose, treat, cure or prevent any disease.
References
- Endometriosis — NHS
- Endometriosis — World Health Organization fact sheet
- Endometriosis — Royal College of Obstetricians and Gynaecologists (RCOG) patient information
- Becker CM, et al. ESHRE guideline: endometriosis. Hum Reprod Open. 2022;2022(2):hoac009
- Adenomyosis — NHS
- Period pain — NHS
- Yen CF, et al. Improving the diagnosis of endometriosis in Asia-Pacific: consensus from the Asia-Pacific Endometriosis Expert Panel for Endometriosis. Int J Gynaecol Obstet. 2023;163(3):720-732
- Kim MR, et al. Clinical diagnosis and early medical management for endometriosis: consensus from Asian expert group. Healthcare (Basel). 2022;10(12):2515
- Rao SR, et al. Sexual functioning and marital satisfaction among endometriosis patients in Malaysia: a cross-sectional study. Front Psychol. 2023;14:1224995
