Many people experience some discomfort during their menstrual periods. However, severe or persistent period pain is not normal and should never be ignored. One possible cause is endometriosis, a long-term condition that can significantly affect physical health, emotional wellbeing, education, work, relationships and fertility.
Endometriosis affects an estimated 1 in 10 women and girls of reproductive age worldwide, making it one of the most common gynaecological conditions. Despite this, many people live with symptoms for years before receiving a diagnosis because their pain is often dismissed as “normal period pain.”
Although there is currently no cure for endometriosis, early diagnosis and appropriate treatment can help manage symptoms, improve quality of life and reduce complications.
What is Endometriosis?
Endometriosis is a chronic condition in which tissue similar to the lining of the uterus (womb) grows outside the uterus. This tissue can attach to organs and structures within the pelvis and, in rare cases, other parts of the body.
Unlike the lining inside the uterus, this tissue has no way to leave the body during menstruation. Instead, it can cause inflammation, irritation, scar tissue (adhesions) and, in some cases, cysts.
The condition most commonly affects the:
• ovaries;
• fallopian tubes;
• outer surface of the uterus;
• lining of the pelvis (peritoneum);
• bowel; and
• bladder.Less commonly, endometriosis may affect other parts of the body.
How Common Is Endometriosis?
Endometriosis affects approximately 190 million women and girls worldwide.
It can occur:
• from adolescence, soon after the first menstrual period;
• throughout the reproductive years; and
• occasionally after menopause.Symptoms often begin during the teenage years, but many people are not diagnosed until much later.
What Causes Endometriosis?
The exact cause of endometriosis is still unknown.
Researchers believe it develops through a combination of genetic, hormonal, immune and environmental factors. Having a close family member with endometriosis may increase the likelihood of developing the condition.
It is important to know that endometriosis:
• is not caused by poor hygiene;
• is not contagious;
• is not a sexually transmitted infection; and
• is not caused by something a person has done.Who Is at Risk?
Anyone who menstruates can develop endometriosis.
Factors that may increase the likelihood include:
• a family history of endometriosis;
• starting menstruation at an early age;
• short menstrual cycles;
• heavy or prolonged menstrual bleeding; and
• certain abnormalities affecting the reproductive tract.Having one or more risk factors does not mean a person will definitely develop the condition.
Types of Endometriosis
Healthcare professionals generally describe three main types:
- Superficial Peritoneal Endometriosis
This is the most common type. The lesions are found on the lining of the pelvis.
- Ovarian Endometriomas
These are cysts that develop on the ovaries and contain old blood. They are sometimes called “chocolate cysts.”
- Deep Infiltrating Endometriosis
This form grows deeper into tissues and may affect organs such as the bowel, bladder or pelvic ligaments.
- Stages of Endometriosis
Healthcare professionals may classify endometriosis into four stages based on the number, size, depth and location of the lesions, as well as the amount of scar tissue present.
Stage I – Minimal
Small, superficial lesions with little or no scar tissue.
Stage II – Mild
More numerous or slightly deeper lesions with limited scar tissue.
Stage III – Moderate
Multiple deep lesions, small ovarian cysts (endometriomas) and more extensive scar tissue.
Stage IV – Severe
Extensive disease with large endometriomas, significant scar tissue and possible involvement of nearby organs such as the bowel or bladder.
It is important to remember that the stage of endometriosis does not determine how much pain someone experiences. A person with Stage I disease may have severe pain, while another with Stage IV disease may have few or no symptoms.
Signs and Symptoms
Symptoms vary from person to person. Some people have mild symptoms, while others experience severe pain that affects everyday life.
Common symptoms include:
• severe menstrual cramps that are not relieved by ordinary pain medication;
• chronic pelvic pain;
• pain before, during or after menstruation;
• heavy menstrual bleeding or bleeding between periods;
• pain during or after sexual intercourse;
• pain when passing urine or opening the bowels, especially during menstruation;
• bloating, nausea or digestive symptoms during periods;
• fatigue;
• lower back pain; and
• difficulty becoming pregnant.Some people with endometriosis have no symptoms and are only diagnosed during investigations for infertility or other conditions.
Possible Complications
If left untreated, endometriosis may lead to:
• chronic pelvic pain;
• scar tissue and adhesions;
• ovarian cysts;
• bowel or bladder complications in severe cases;
• fertility challenges; and
• reduced quality of life.Living with chronic pain may also affect mental health, leading to anxiety, depression or emotional distress.
Endometriosis and Fertility
Endometriosis can make it more difficult for some people to become pregnant by affecting the ovaries, fallopian tubes or other reproductive organs.
However, many people with endometriosis conceive naturally, while others may benefit from fertility treatment.
Having endometriosis does not automatically mean a person will be infertile.
How Is Endometriosis Diagnosed?
Diagnosis begins with a discussion about symptoms and menstrual history.
A healthcare professional may recommend:
• a pelvic examination where appropriate;
• blood tests to rule out other conditions;
• an ultrasound scan to identify ovarian cysts or other abnormalities; and
• laparoscopy, a minimally invasive surgical procedure that allows doctors to look inside the pelvis and, if necessary, take a small tissue sample to confirm the diagnosis.Because symptoms can resemble those of other conditions, diagnosis may take time.
Treatment
Although there is no cure, treatment can effectively manage symptoms and improve quality of life.
Treatment depends on:
• the severity of symptoms;
• age;
• whether pregnancy is desired; and
• the extent of the disease.Treatment options may include:
- Pain Relief
Medicines can help relieve pain and inflammation.
- Hormonal Therapy
Hormonal treatments may reduce or stop menstruation, slowing the growth and activity of endometriosis tissue.
- Surgery
Some people may benefit from surgery to remove endometriosis lesions, scar tissue or ovarian cysts.
- Fertility Treatment
For individuals experiencing infertility, specialised fertility treatment may be recommended.
Living with Endometriosis
Living with endometriosis can be challenging, but many people manage the condition successfully with appropriate medical care.
Helpful strategies include:
• attending regular medical reviews;
• keeping a record of symptoms and menstrual cycles;
• taking medicines as prescribed;
• staying physically active where possible;
• eating a balanced diet;
• getting adequate rest; and
• seeking emotional support from trusted friends, family or support groups.When Should You See a Healthcare Professional?
Seek medical advice if you:
• have severe period pain that prevents you from attending school, work or carrying out normal daily activities;
• experience pelvic pain that lasts throughout the month;
• have pain during sexual intercourse;
• have pain when opening your bowels or passing urine during your period;
• experience very heavy menstrual bleeding together with severe pain;
• have difficulty becoming pregnant after trying to conceive; or
• find that your symptoms are getting worse over time.Early diagnosis can improve symptom control and reduce the impact of the condition on daily life.
Myths and Facts
Myth: Severe period pain is normal.
Fact: Mild discomfort can be normal, but severe pain that interferes with daily life should always be assessed.
Myth: Endometriosis only affects older women.
Fact: Symptoms often begin during adolescence.
Myth: Everyone with endometriosis is infertile.
Fact: Many people with endometriosis become pregnant naturally.
Myth: Pregnancy cures endometriosis.
Fact: Pregnancy may temporarily improve symptoms for some people, but it is not a cure.
Frequently Asked Questions
Can teenagers develop endometriosis?
Yes. Symptoms often begin during adolescence, even if diagnosis occurs years later.
- Does everyone with endometriosis have severe pain?
No. Some people have severe disease with little pain, while others have mild disease but significant symptoms.
- Can endometriosis come back after treatment?
Yes. Symptoms may return after treatment, particularly if surgery is performed without ongoing medical management.
- Is there a cure?
There is currently no cure, but effective treatments can help manage symptoms and improve quality of life.
Key Messages
• Endometriosis is a common, long-term inflammatory condition affecting approximately 1 in 10 women and girls of reproductive age.
• Severe period pain is not normal and should never be ignored.
• Symptoms may include pelvic pain, heavy periods, painful bowel movements, painful urination during menstruation, pain during sex and fertility challenges.
• The severity of symptoms does not always match the stage of the disease.
• Early diagnosis and treatment can improve quality of life and help prevent complications.
• If your periods stop you from living your normal life, speak to a qualified healthcare professional.Knowledge Hub Series: Period Talk Uganda – Evidence-Based Menstrual Health Resources