What is endometriosis, and what can help?

Endometriosis tissue is most often found in the pelvis, including around the ovaries, fallopian tubes and the lining of the pelvis. It can also affect areas near the bowel, bladder or ureters, and is sometimes found outside the pelvis.

This tissue can contribute to inflammation, scarring and pain. Endometriosis is influenced by hormones, but its exact cause is not known. This is not your fault, and symptoms are not a measure of how well you cope with pain.

The extent of endometriosis does not reliably predict how much pain someone has. A person with limited visible disease can have severe symptoms, while someone with more extensive disease may have little pain. Treatment decisions should reflect symptoms, daily impact, preferences and priorities rather than a stage alone.

Symptoms can be cyclical, becoming worse before or during a period, or occur at other times. They can include:

These symptoms are not specific to endometriosis. Adenomyosis, pelvic-floor muscle pain, irritable bowel syndrome, bladder conditions, fibroids, ovarian cysts, infection and other causes of persistent pelvic pain can overlap or occur at the same time. A useful assessment considers the whole pattern rather than assuming every symptom has one cause.

You do not need a perfect diary or proof before asking for help. A short record can make the pattern easier to discuss. Bring or note:

You can also explain what matters most now, such as reducing pain, making periods manageable, improving sex or daily function, understanding fertility, or reviewing a treatment that is not working.

A diagnosis can begin with the symptom history and clinical assessment. A GP may discuss an abdominal or internal pelvic examination, imaging, initial treatment and referral. A normal examination does not rule out endometriosis.

Pelvic ultrasound is commonly used to look for ovarian endometriomas, deep endometriosis and other possible causes. An internal transvaginal ultrasound may give more useful pelvic detail, but it is not suitable or acceptable for everyone. The clinician or imaging provider should explain why an internal examination or scan is suggested, what will happen and what alternatives are available. It requires your consent. You can decline or stop, ask questions, request a chaperone, and discuss an abdominal ultrasound, MRI or another plan where appropriate.

A normal ultrasound does not exclude endometriosis, especially superficial disease. Specialist ultrasound or MRI may help when deep endometriosis is suspected or the first scan does not explain the symptoms.

Laparoscopy is keyhole surgery that can diagnose and sometimes treat endometriosis. It remains useful in selected situations, but surgery is not always required before a clinician can make a working or imaging-based diagnosis, start symptom treatment or arrange referral. The choice depends on the symptoms, imaging, response to treatment, fertility priorities, preferences and the possible benefits and risks of surgery.

There is no single best treatment and no treatment can promise a permanent cure. A plan may combine options and change over time:

Ask what each option aims to improve, what the drawbacks are, how it fits your priorities, and when the plan will be reviewed. If a proposed procedure could include treatment during the operation, ask what has been discussed and consented to in advance.

Removing the uterus may be considered in selected situations, but a hysterectomy is major surgery and is not a guaranteed cure for endometriosis or pelvic pain. It ends the ability to carry a pregnancy and requires an individual specialist discussion.

Endometriosis can make pregnancy more difficult for some people, but it does not mean everyone with endometriosis is infertile. Tell the GP or specialist whether you are trying to become pregnant now, may want pregnancy later or do not want pregnancy. This can change the balance between hormonal treatment, surgery, watchful follow-up and fertility assessment.

Pregnancy is not a cure for endometriosis. Symptoms may improve for a time during pregnancy, stay present or return after periods resume.

Hormonal treatments used to suppress endometriosis do not improve the chance of conceiving while they are being used. If you are trying to become pregnant or have concerns about fertility, ask when a fertility assessment or specialist referral would be useful. Decisions about surgery should consider possible benefits alongside effects on ovarian reserve and future fertility.

Pelvic-health physiotherapy may help when pelvic-floor muscle tension, pain with sex or other pelvic symptoms are part of the problem. Psychological and pain-management support can help with the effects of persistent pain without suggesting that the pain is imagined.

Evidence for specific diets, exercise programmes and supplements remains limited or uncertain. A recent trial found that diet and exercise coaching added to hormonal treatment improved some pain outcomes more than hormonal treatment alone, but it could not show whether diet, exercise or coaching caused the difference, and it did not show that these approaches replace medical care.

Choose changes that are tolerable and nutritionally adequate. Avoid blaming yourself, pushing through a flare or cutting out whole food groups based on a cure claim. A dietitian, physiotherapist or exercise physiologist with relevant experience may help tailor an approach.

A HerDoc GP can listen to the symptom pattern and daily impact, review medicines and previous reports, discuss possible causes and initial treatment options, and arrange imaging, blood tests or referral when clinically indicated. A phone consultation cannot provide an abdominal or internal examination.

Ultrasound, MRI, internal examination, specialist procedures and surgery happen through appropriate in-person providers. If the history suggests deep endometriosis, an ovarian endometrioma, another condition needing examination, persistent symptoms despite treatment, or a fertility concern, the GP can discuss the appropriate referral or local assessment. HerDoc does not perform specialist imaging or surgery.

If a HerDoc GP arranges a test, ask how and when to review the result. A later HerDoc appointment, including a result-review consultation, is booked separately.

Endometriosis symptoms can persist or recur after medicine or surgery. That does not mean you have failed treatment. Arrange review if pain, bleeding, bowel or bladder symptoms return, side effects are difficult, the plan no longer fits your fertility goals, or symptoms continue to limit daily life.

A review may reconsider the diagnosis, look for an overlapping condition, adjust treatment or involve a gynaecologist, pelvic-health physiotherapist, pain service, fertility specialist or another clinician. Agree on what improvement to look for and when to reassess rather than continuing an ineffective plan indefinitely.

Australian and international authoritative sources supporting this guide. Source organisations have not reviewed or endorsed HerDoc.