What is Endometriosis?
Endometriosis is a long-term gynaecological condition that affects women throughout their reproductive lives and sometimes even beyond. It can lead to a variety of symptoms, the most notable being pelvic pain, especially during a woman’s menstrual period.
As one of the most common gynaecological disorders in women of reproductive age, endometriosis can be challenging to diagnose. The condition occurs when endometrial tissue, which normally lines the uterus, grows in other areas of the pelvic cavity, such as the fallopian tubes and ovaries. In some cases, this tissue may also migrate to the outside of the bowel and bladder.
This misplaced tissue acts similarly to how it would within the uterus; it thickens, breaks down, and bleeds. When this occurs within the uterus, the blood is expelled during menstruation. However, when the tissue bleeds in other areas of the pelvic cavity, it does not have an outlet, leading to the formation of cysts, scar tissue, and inflammation.
Endometriosis typically affects areas around the reproductive organs in the pelvis or abdomen, including:
- Fallopian tubes
- Ligaments around the uterus (uterosacral ligaments)
- Lining of the pelvic cavity
- Ovaries
- Outside surface of the uterus
- Space between the uterus and the rectum or bladder
More rarely, it can also grow on and around the:
- Bladder
- Cervix
- Intestines
- Rectum
- Stomach (abdomen)
- Vagina or vulva
Endometrial tissue can grow outside the uterus, and unlike the healthy tissue inside the uterus, it does not shed during menstrual cycles. This abnormal tissue can cause inflammation, scarring, and painful cysts. It may also lead to fibrous tissue forming between reproductive organs, making them stick together. Endometriosis can begin with a person’s first menstrual period and can last until menopause.
Endometriosis can lead to several complications. It often causes severe pelvic pain that can affect your overall well-being and daily activities. Additionally, individuals with endometriosis may face fertility challenges, making it more difficult to achieve pregnancy.
Other than chronic pain and infertility, severe endometriosis can also lead to complications like:
- Bowel or bladder problems – If tissue grows on or near your intestines, rectum, or bladder, you may notice blood in your urine or stool and experience severe pain when using the bathroom.
- Shortness of breath or chest pain – Endometriosis can occasionally affect the lungs or diaphragm, leading to breathing difficulties.
Endometriosis can greatly impact a woman’s life and may be mistaken for conditions like irritable bowel syndrome (IBS). Therefore, obtaining an accurate diagnosis is essential for receiving appropriate treatment.
Symptoms
Endometriosis impacts women in various ways. Some may have severe endometriosis but not show any symptoms, while others might only have minimal endometriosis but experience significant symptoms. Generally, in most women, a higher severity of the disease correlates with more intense symptoms.
Endometriosis should be considered in women, including those who are 17 years old or younger, who exhibit one or more of the following symptoms or signs. The most common signs of endometriosis are:
- Painful menstrual cramps that may go into the abdomen (stomach) or lower back.
- Pain during or after sex.
- Chronic pelvic pain (this can be constant or come and go but is often worse during periods).
- Infertility, or not being able to get pregnant.
- Severe period pains (dysmenorrhoea) affecting daily activities and quality of life.
Other symptoms may include:
- Diarrhea, constipation or painful bowel movements during a menstrual period
- Fatigue or low energy
- Heavy or irregular periods
- Pain with urination or bowel movements during a menstrual period
- Spotting or bleeding between menstrual periods. This can be caused by something other than endometriosis.
- Period-related urinary symptoms.
Endometriosis itself does not cause heavy menstrual bleeding. However, many women with endometriosis also have a condition called adenomyosis, in which the cells of the uterine lining grow into the uterine muscle. This can lead to heavy and painful periods.
When endometriosis affects the bowel, it is more likely to cause pain during bowel movements and bleeding from the rectum during menstruation. Additionally, if the bladder is involved, it may result in pain while urinating or visible blood in the urine during a woman’s period.
Each person’s experience with endometriosis varies. Women may have some of these symptoms, all of them, or none at all. It’s important to note that experiencing severe pain or other symptoms does not necessarily indicate more severe endometriosis. Some women may experience a wide range of symptoms, while others may only have a few.
Click HERE to try the Endometriosis UK Symptom Checker Tool. Whilst your symptoms could relate to another condition, or you may have rarer symptoms that don’t flag up on the tool, if you are concerned that you have endometriosis, it can be helpful to check.
Cause
The exact cause of endometriosis remains unclear. It is believed that endometriosis occurs due to a combination of various factors, potentially linked to genetics or immune system issues.
Whilst doctors do not know exactly what causes endometriosis, there are a few theories of what might cause it:
- Blood or lymph system transport: Endometrial tissue can move to other parts of the body through the blood or lymphatic systems. This is similar to how cancer cells spread throughout the body.
- Direct transplantation: Endometrial cells can attach to the abdominal walls or other areas of the body after surgeries, such as a C-section or hysterectomy.
- Genetics: Endometriosis appears to affect certain families more frequently, suggesting a possible genetic link to the condition.
- Reverse menstruation: Endometrial tissue is displaced to the fallopian tubes and abdomen instead of being expelled from the body during a woman’s period.
- Transformation: Other cells in the body can transform into endometrial cells and begin growing outside the endometrium.
Diagnosis
Endometriosis can be challenging to diagnose. If you experience any symptoms that may indicate endometriosis and they are impacting your daily life, work, or relationships, it is essential to speak with your GP. They can help initiate the diagnostic process.
During your appointment, your GP will ask about your symptoms and menstrual cycle. To prepare for this discussion, it can be helpful to write down your symptoms and note when they occur in relation to your menstrual cycle.
Your doctor may conduct a physical exam, which typically involves an examination of your abdomen, an internal pelvic examination, and, in some cases, an examination of your rectum. These examinations can help identify the source of your pain, check for endometriosis nodules at the top of the vagina, and assess any scarring related to deep endometriosis that may be affecting your pelvic structures, such as the uterus.
If they think you might have endometriosis, your GP may:
- Refer you to a specialist called a gynaecologist
- Offer medicines to help relieve your symptoms
- Refer for further tests
- Refer to a fertility specialist who can perform some tests and suggest some fertility treatments if you have endometriosis and you’re struggling to become pregnant.
You may be recommended for additional investigations. This is to gather detailed information about the structures in your pelvis and abdomen, as well as the locations of any endometriosis or scar tissue. Further tests for endometriosis may include:
- Ultrasound scan – A scan may identify features of endometriosis such as endometriomas which are benign cysts that develop in ovaries associated with endometriosis.
- Pelvic MRI scan – A pelvic MRI scan produces images (or pictures) from various angles in your pelvis and shows up soft tissues (such as your uterus, ovaries and bladder) very clearly.
- Diagnostic laparoscopy – Keyhole surgery to investigate the presence of endometriosis.
- Sigmoidoscopy – To look for Endometriosis invading through the bowel.
- Cystoscopy – If you are experiencing significant bladder symptoms or blood in the urine.
Currently, laparoscopy is the only way to definitively diagnose endometriosis. However, your specialist will initially consider less invasive procedures to determine if a laparoscopy is necessary.
To find out more please watch the video below.
Treatment
Depending on the severity of your symptoms, there are various treatments available for managing the symptoms of endometriosis, which can help improve your quality of life.
Treatments include:
- Painkillers – such as ibuprofen and paracetamol (to treat the pain symptoms of endometriosis)
- Hormone medicines and contraceptives – including the combined pill, the contraceptive patch, an intrauterine system (IUS), and medicines called gonadotrophin-releasing hormone (GnRH) analogues
- Surgery to cut away patches of endometriosis tissue
- An operation to remove part or all of the organs affected by endometriosis – such as surgery to remove the womb (hysterectomy)
If you undergo a diagnostic laparoscopy and evidence of endometriosis is found, the surgical team may discuss the option of removing scar tissue and any lesions during the same procedure. This approach helps to avoid the need for additional surgeries. In more severe cases, a second operation may be necessary after further discussions. This could involve a multidisciplinary team and the use of medication to shrink the endometriosis, making subsequent surgery easier.
Endometriomas, which are cysts of endometriosis found on the ovaries, are unlikely to resolve on their own and typically cannot be treated with medication. If necessary, you may also be offered a sigmoidoscopy and/or cystoscopy during your diagnostic laparoscopy.
In some cases, a hysterectomy may be recommended alongside the excision of endometriosis, especially if there is associated adenomyosis or very severe endometriosis present.
Although the scarring caused by endometriosis can be surgically removed, there is currently no cure for the condition—only management options. Even after surgery, individuals may still experience symptoms such as painful periods, and additional scarring may develop over time. However, well-planned surgery, combined with appropriate ongoing medical management, can help minimize the effects of these persistent symptoms.