Endometriosis affects roughly one in ten women and girls of reproductive age, yet it often takes years to be diagnosed. Many are told that severe period pain is normal. It is not. Endometriosis is a real, often painful condition with effective treatments, and getting a diagnosis is the first step toward relief.
What endometriosis is
In endometriosis, tissue similar to the lining of the uterus grows outside the uterus. It is most often found on the ovaries, the fallopian tubes, the tissue lining the pelvis, and sometimes the bowel or bladder. This tissue responds to hormones each month, causing inflammation, pain and scar tissue (adhesions). Cysts on the ovaries, called endometriomas, can also form.
The exact cause is not fully understood. Theories include menstrual blood flowing backward through the fallopian tubes, immune system factors, genetics and hormonal influences. It often runs in families.
Symptoms
- Painful periods that are severe, get worse over time, or stop you from going to school or work
- Pelvic pain between periods
- Pain during or after sex, often felt deep inside
- Painful bowel movements or urination, especially during periods
- Heavy or irregular bleeding
- Bloating, sometimes called “endo belly,” along with nausea, diarrhea or constipation
- Fatigue
- Difficulty getting pregnant
The severity of pain does not always match the amount of endometriosis. Some people with extensive disease have few symptoms, while others with small areas have severe pain.
Why diagnosis takes so long
On average, diagnosis can take several years from the start of symptoms. Reasons include the normalization of period pain, symptoms that overlap with irritable bowel syndrome, bladder conditions and pelvic inflammatory disease, and the fact that standard scans can look normal.
Keeping a symptom diary, noting pain levels, timing in your cycle, bowel and bladder symptoms, and days missed from work or school, can help your doctor see the pattern.
How endometriosis is diagnosed
- Medical history and pelvic exam, which may reveal tenderness or nodules.
- Transvaginal ultrasound, which can detect ovarian endometriomas and, in expert hands, deep endometriosis.
- MRI, used in some cases to map deep disease before surgery.
- Laparoscopy, keyhole surgery in which a camera looks inside the abdomen. It has traditionally been the definitive way to diagnose endometriosis, and lesions can often be removed at the same time.
Keep reading
The rest of this guide is free. Watch a short ad to unlock it and support independent health writing.
Preparing your ad…
Increasingly, guidelines support starting treatment based on symptoms and imaging, without waiting for surgery to confirm the diagnosis.
Treatment options
There is no cure yet, but treatment can relieve pain, slow progression and improve fertility. The right choice depends on your symptoms, age and whether you want to become pregnant.
Pain relief
NSAIDs such as ibuprofen or naproxen, taken at the start of or just before a period, reduce inflammation and pain. Heat pads, regular exercise and pelvic physical therapy also help many people.
Hormonal treatments
These reduce or stop periods and calm endometriosis activity:
- Combined birth control pills, patches or rings, sometimes taken continuously to skip periods
- Progestin-only treatments, such as norethindrone, dienogest, the hormonal IUD, the implant or injections
- GnRH antagonists, such as elagolix and relugolix combination therapy, taken by mouth. They lower estrogen levels significantly and are effective for moderate to severe pain. Add-back hormones are often used to protect bone density.
- GnRH agonists, such as leuprolide injections, used less often now that oral options exist
Symptoms often return when hormonal treatment stops, so many people use it long term.
Surgery
Laparoscopic excision removes endometriosis tissue and adhesions. It can significantly reduce pain and may improve fertility. Specialist endometriosis surgeons are recommended for deep disease involving the bowel or bladder. Endometriosis can come back after surgery, and hormonal treatment afterward lowers that risk.
Hysterectomy with removal of all visible endometriosis may be considered for people with severe symptoms who have finished having children, but it is not always a cure.
Fertility
Many people with endometriosis conceive naturally. For those who have difficulty, options include surgery to remove endometriosis, ovulation induction with intrauterine insemination, and IVF. If fertility is a priority, ask for referral to a fertility specialist early.
Endometriosis and other conditions
People with endometriosis have a higher risk of certain conditions, including other chronic pain conditions, autoimmune diseases, and a slightly higher risk of some types of ovarian cancer, though the overall risk remains low. Depression and anxiety are common with chronic pain, and support from a mental health professional can help.
When to see a doctor
See a doctor if period pain stops you from doing normal activities, painkillers do not help, you have pain during sex, or you are having difficulty getting pregnant. Seek urgent care for sudden, severe pelvic pain with fever, fainting or vomiting.
The bottom line
Severe period pain is not something you just have to live with. Endometriosis is common and often missed, but a combination of pain relief, hormonal treatment and, when needed, specialist surgery can control symptoms for most people. Keep a symptom diary and ask your doctor directly whether endometriosis could be the cause.
This article is for general information and does not replace medical advice.