Affecting 10% of women and girls of reproductive age, endometriosis can not only be painful and cause physical discomfort, but it can also be mentally and emotionally draining. Endometriosis can also affect fertility and in, in some cases, can cause infertility.

 What is endometriosis?

Endometriosis is a chronic gynaecological condition which causes endometriosis tissue, similar to the lining of the uterus (endometrium), to grow outside the uterine cavity. This aberrant growth commonly occurs on the ovaries, fallopian tubes and other areas inside the pelvis.

Each month the cells accumulate. Then, during menstruation, the endometrial tissue out of the uterus sheds too. However, because this tissue is growing out of the womb it has nowhere to go. This causes pain, inflammation and potential scar tissue that can significantly impact a woman’s quality of life.

 Types of endometriosis

 There are four different types of endometriosis and it’s possible to have more than one type.

  • Peritoneal (superficial) endometriosis is found mainly on the pelvic peritoneum – a thin film that lines the inner surface of the pelvis and surrounds the pelvic organs.

  • Ovarian endometriosis (endometrioma) is when endometriosis cysts are found in the ovaries.

  • Deep endometriosis is found in locations such as the bladder, bowel and recto-vaginal septum (tissue separating the vagina and the rectum). The lesions of endometriosis are at a deeper level than peritoneal (superficial) endometriosis.

  • Extra-pelvic endometriosis – is when endometriosis is found outside of the pelvis, such as the thorax (chest) and caesarean scars.

 Is endometriosis common?

Endometriosis affects 10% of women and those assigned female at birth from puberty to menopause, in the United Kingdom that equates to approximately 1.5 million women.

It affects females of all ages and can begin as early as first mensuration and last until women hit menopause, but it primarily affects women between 25 and 40 and is often a long-term condition.  

Those who have not yet had children and who have heavier periods are considered to be at greater risk. It is also believed to be genetic, as more than one person in a family will often suffer from the condition.

What causes endometriosis?

The actual cause of endometriosis is unknown. It has been suggested (though not proven) that the condition might be caused by a combination of factors, including:

  • family history

  • a hormonal imbalance

  • menstrual blood flowing back through the fallopian tubes

  • cells spreading via the bloodstream

  • a problem with the immune system

  • environmental factors  – research studies have shown that when animals were exposed to high levels of dioxin they developed endometriosis, although this has not yet been proven for humans.

What are common symptoms of endometriosis?

Endometriosis can manifest in a variety of ways, making it a challenging condition to diagnose. The most common symptom is pelvic pain, which can range from mild discomfort to severe pain that disrupts daily activities. This pain often intensifies during the menstrual period, but it can also occur at other times. Women with endometriosis may experience heavy or irregular menstrual periods, which can be both painful and disruptive.

Painful sex is another common symptom, causing discomfort during or after intercourse. This can significantly impact intimate relationships and emotional well-being. Infertility is a major concern for many women with endometriosis, as the condition can affect the reproductive organs and hinder the ability to conceive.

Bowel and urinary symptoms are also prevalent. Some women may experience constipation, diarrhoea, or pain during bowel movements, particularly during their menstrual cycle. Similarly, urinary symptoms such as painful urination or frequent urination can occur, especially during menstruation. These symptoms can be distressing and impact the quality of life.

What are common symptoms of endometriosis, including pelvic pain?

The symptoms of endometriosis can vary widely among individuals (some people with endometriosis have no symptoms whatsoever) but common endometriosis symptoms include:

  • Pelvic Pain: Often severe during menstruation (dysmenorrhea), but it can also occur at other times.

    • Abdominal Pain: Especially when endometriomas—fluid-filled cysts formed from endometrial tissue—rupture.

  • Heavy Menstrual Bleeding: Experiencing menorrhagia or bleeding between periods.

  • Pain During Intercourse: Discomfort or pain during or after sexual activity.

  • Bowel and Urinary Issues: Pain during bowel movements or urination, especially during menstrual periods.

  • Fatigue: Chronic tiredness that can affect daily activities.

  • Infertility: Up to 30% of women experiencing infertility challenges have endometriosis.

Impact on quality of life

The chronic pain and other symptoms associated with endometriosis can lead to:

  • Emotional and Mental Health Issues: Including depression and anxiety.

  • Work and Social Life Disruptions: Increased absenteeism and reduced productivity.

  • Relationship Strain: Due to pain during intercourse and emotional stress.

Does endometriosis cause infertility?

The short answer is no, endometriosis does not cause infertility. However, it can affect fertility and is thought that the link might be due to the condition scarring and disturbing reproductive organs. Unfortunately, the explicit links between fertility and endometriosis are not fully known but we do know that it can impact egg quality and affect implantation of a fertilised egg into the womb.

What fertility options are there for people with endometriosis?

Women with endometriosis can have surgery to remove the tissue to improve their chances of conceiving. However, there is no guarantee, and surgery can lead to further complications, such as causing infections, bleeding or damage to organs. Surgery is also only short acting and the endometriosis tissue can grow back.

 Other options are to try and conceive through assisted reproduction treatments like IVF or IUI.

Always seek expert medical advice, so that you can weigh up the benefits and the risks, before deciding whether or not to have surgery or look at any fertility treatments.

 The IVFN works with the best fertility experts to offer advice to our members – you can find more information about membership here.

 Endometriosis and pregnancy

People with endometriosis may be more likely to experience miscarriages and experience ectopic pregnancy, however, there are debates over the increased risk of complications during pregnancy.

 Unfortunately, pregnancy does not cure endometriosis. In many people, it returns with the pain after birth.  

How do doctors diagnose endometriosis?

According to charity Endometriosis UK, the process to diagnose endometriosis can take as long as 7.5 years. This is because endometriosis shares symptoms with other conditions, so it can be difficult to diagnose endometriosis.

A pelvic exam is often performed to check for signs of endometriosis, such as tenderness or pain, as part of the diagnostic process.

It cannot be diagnosed via an internal examination, blood tests or scans. The only way to get an accurate diagnosis of endometriosis is to have a laparoscopy (keyhole surgery), where a tiny camera is inserted into the pelvis through an incision in the navel to look for endometrial tissue.

The National Institute for Health and Care Excellence (NICE) Guidelines for endometriosis and those looking to manage their diagnosis can be found here.

 Treatment Options

While there is no cure for endometriosis, various treatments aim to manage symptoms and improve quality of life, including:

  • Pain Relief: Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen.

  • Surgical Interventions: Laparoscopic surgery to remove or destroy endometrial tissue, considered when other treatments are ineffective. This may also be necessary to address complications such as ovarian cysts.

  • Hormonal Therapies: Including contraceptives, gonadotropin-releasing hormone (GnRH) agonists, and the recently approved daily pill, relugolix-estradiol-norethisterone (Ryeqo). Hormonal birth control is a primary option for managing symptoms and pain associated with endometriosis.

Hormone Therapy

Hormone therapy is a cornerstone in the treatment of endometriosis, aimed at reducing estrogen levels to shrink endometrial implants and alleviate symptoms. One common approach is the use of birth control pills, which help regulate menstrual cycles and reduce the severity of symptoms. These pills can be particularly effective in managing painful menstrual cramps and heavy bleeding.

Progesterone therapy is another option, working to counteract the effects of estrogen and reduce the growth of endometrial tissue. This can help alleviate symptoms and improve overall well-being. Gonadotropin-releasing hormone (GnRH) agonists are also used to treat endometriosis by significantly lowering estrogen levels, leading to the shrinkage of endometrial implants. These medications can be highly effective but may come with side effects that need to be managed under medical supervision.

Alternative Medicine

Alternative medicine can complement traditional treatments, offering additional ways to manage symptoms of endometriosis. Acupuncture is one such therapy, known for its potential to reduce pain and improve overall well-being. By targeting specific points in the body, acupuncture can help alleviate chronic pelvic pain and other symptoms.

Herbal supplements, such as turmeric and ginger, are believed to have anti-inflammatory properties that may help reduce symptoms. These natural remedies may be a valuable addition to a comprehensive treatment plan. Mind-body therapies, including meditation and yoga, can also play a crucial role in managing endometriosis. These practices help reduce stress, improve mental health, and enhance overall quality of life.

Surgical Treatment

For women with severe endometriosis or those who have not responded to other treatments, surgical intervention may be necessary. Laparoscopy is a minimally invasive procedure that allows surgeons to remove endometrial implants and scar tissue through small incisions in the abdomen. This procedure can provide significant relief from symptoms and improve fertility outcomes.

In more severe cases, a hysterectomy, which involves the removal of the uterus, may be considered. This option is typically reserved for women who have not found relief through other treatments and are not planning to conceive. While effective, it is a major surgery with significant implications, and it should be carefully considered in consultation with a healthcare provider.

Managing Chronic Pelvic Pain

Chronic pelvic pain is a debilitating symptom of endometriosis that can be challenging to manage. Over-the-counter pain medications, such as ibuprofen or acetaminophen, can help reduce pain and inflammation. Heat therapy, such as applying a heating pad to the pelvic area, can also provide relief from discomfort.

Regular exercise is another effective strategy, as it helps reduce stress and improve overall well-being. Activities like walking, swimming, or yoga can be particularly beneficial. Alternative therapies, including acupuncture and massage, can also help manage chronic pelvic pain by promoting relaxation and reducing muscle tension.

Hormone therapy remains a key component in managing chronic pelvic pain associated with endometriosis. By reducing estrogen levels and shrinking endometrial implants, hormone therapy can help alleviate pain and improve quality of life. Combining these strategies can provide a comprehensive approach to managing chronic pelvic pain and enhancing overall well-being.

What is Relugolix-estradiol-norethisterone (Ryego)?

In March 2025 a daily pill for endometriosis was approved for use across the NHS, meaning around 1,000 women in the UK suffering with symptoms of endometriosis will be able to manage the condition from home. Relugolix-estradiol-norethisterone, works by blocking the specific hormones that contribute to endometriosis while providing necessary hormone replacement, negating the need for multiple medications and regular trips to clinics for injections.

Is there a cure for endometriosis?

Unfortunately, there is no known cure for endometriosis and there is no known way to prevent the condition.

The Importance of endometriosis awareness and support

Increasing awareness about endometriosis is crucial for early diagnosis and effective management. Educational initiatives targeting both the public and healthcare professionals can lead to better recognition of symptoms and timely interventions.

Support groups and resources, such as those provided by Endometriosis UK, offer valuable assistance to those affected, helping them navigate the challenges posed by the condition.

At IVFN we understand the physical and emotional challenges faced by people dealing with fertility issues and treatment and offer a plethora of support for our members through our online community, safe space events and dedicated team of experts who can provide advice on conditions like endometriosis and fertility.