What is Endometriosis?

There are 1.5 million people in the UK who are currently diagnosed with endometriosis. That equates to 10% of all women and people assigned female at birth. In fact, endometriosis is so prevalent that it occurs at similar rates to diabetes. Unlike diabetes, however, endometriosis is a relatively unknown and un-talked-about condition.

Endometriosis is a serious condition that can affect women of any age. Today, we are going to look at endometriosis in more detail, including the common symptoms and treatment options.

What is endometriosis?

Endometriosis is an often painful condition where the tissue similar to the tissue that usually lines the inside of your womb grows in other places, such as your fallopian tubes, your ovaries and the lining of your pelvis. In some rare cases, the tissue can be found outside of your pelvic area.

The tissue acts the same way that the tissue in your womb acts; it will thicken, break apart and bleed at the end of each menstrual cycle. However, because the blood and tissue have no way to exit the body, they become trapped. The areas surrounding the tissue can become irritated, inflamed or swollen and you may have scar tissue, lesions or cysts.

There are four main types of endometriosis that occur in different places:

1. Superficial peritoneal lesion: This is the most common type of endometriosis. It occurs on the peritoneum (the thin membrane that lines your abdomen and pelvis). The endometrial tissue attaches to the peritoneum and can cause lesions. Superficial peritoneal lesions are the least severe form of endometriosis.

2. Endometrioma: This occurs deep in your ovaries and involves dark, fluid-filled cysts (commonly referred to as chocolate cysts). In some cases, cysts can also form in your pelvis or abdomen. The cysts can vary in size and can damage the healthy tissue in your ovaries. Endometriomas don’t usually respond well to treatment.

3. Deeply infiltrating endometriosis (DIE): Endometriosis tissue grows under your peritoneum and can invade the organs in and out of your pelvic cavity, including your ovaries, rectum, bladder and bowel. A large amount of scar tissue can bond the organs, resulting in them becoming stuck in place. DIE is less common than other types of endometriosis, occurring in between 1% and 5% of people with endometriosis.

4. Abdominal wall endometriosis (AWE): This is a rare condition where endometrial tissue grows on your abdominal wall, usually in a surgical scar, such as a Caesarean scar.

Endometriosis can cause severe pain, particularly during a menstrual period. There are different stages of endometriosis, depending on the spread of the endometrial tissue, the depth of the tissue, and the areas of your body that are affected.

Stage 1 – Minimal: Stage 1 involves a few small growths, wounds or lesions with minimal scar tissue. The growths, wounds or lesions can be found on the tissue lining your pelvis or abdomen or on your organs.

Stage 2 – Mild: Stage 2 has more growths than stage 1. The growths may also be deeper in the tissue. Stage 2 endometriosis may involve some scar tissue.

Stage 3 – Moderate: Stage 3 is characterised by many deep growths. There may also be some small cysts in the ovaries and some thick scar tissue (known as adhesions).

Stage 4 – Severe: Stage 4 is the most widespread and severe form of endometriosis. There will be many growths that are deep, thick adhesions and large cysts on one or both of the ovaries.

It is not currently known why some people get more severe endometriosis than others. Unlike many other conditions, endometriosis often doesn’t progress from one stage to the next. Even untreated, endometriosis may never progress to the next stage.

What are the signs of endometriosis?

The signs and symptoms of endometriosis can vary. Different symptoms can occur depending on the type of endometriosis you have and the severity of your condition. The most common symptom is pelvic pain, which is similar to the pain felt from a menstrual period. However, the pain is usually much worse than usual menstrual pain and may increase in severity over time.

The most common signs and symptoms of endometriosis are:

• Pelvic pain in your lower stomach or back which is usually worse during your period.
• Painful periods that prevent you from taking part in everyday activities – This can include pelvic pain, lower back pain, abdominal pain and cramping that lasts for several days.
• Pain during or after sexual intercourse.
• Pain when urinating or painful bowel movements, particularly during your menstrual period.
• Blood in your urine or stools.
• Heavy menstrual periods or bleeding between periods.
• Fatigue, even if you have slept well.
• Diarrhoea, constipation or nausea.
• Bloating.
• Difficulty getting pregnant.
• Infertility.

Some people think that the more severe the pain is, the more serious and advanced their endometriosis is. However, pain is not an accurate indicator of the severity of your endometriosis. Some people with severe pain have stage 1 endometriosis, whereas others with mild pain have stage 3 or 4 endometriosis.

However, difficulty getting pregnant, or infertility, does not usually occur in people with stage 1 or stage 2 endometriosis and is much more common in people with stage 3 or 4.

Because the signs of endometriosis are similar to other conditions, this can make diagnosis more difficult.

In fact, many people with endometriosis are misdiagnosed with other conditions, such as:

• Pelvic inflammatory disease (PID).
• Ovarian cysts.
• Irritable bowel syndrome (IBS).

In some cases, endometriosis can occur alongside these conditions.

How is endometriosis diagnosed?

If you are experiencing symptoms of endometriosis, your first step will be to see your GP. It could be beneficial to keep a symptoms diary, listing the types of symptoms you experience, when they occur and how long they last, and how severe your symptoms are. Your GP will also ask you approximately when your symptoms began.

Endometriosis can be a difficult condition to diagnose, as symptoms can vary significantly from one person to the next. Additionally, the symptoms of endometriosis are similar to the symptoms of other conditions, such as pelvic inflammatory disease. This means that the more information you can provide your GP and the more precise your reporting of your symptoms, the more likely it is that your GP can make an accurate diagnosis.

As well as discussing your symptoms, your GP may also perform a physical examination of your stomach and a pelvic examination. The pelvic exam could enable your GP to feel any cysts or scarring behind your womb.

If your GP thinks you could be experiencing endometriosis, they will refer you to a gynaecologist or other specialist for further testing. Depending on the types of symptoms you experience, there are different types of testing the gynaecologist can perform:

• Imaging tests: This could be an ultrasound, a CT scan or an MRI scan. Imaging tests allow your doctor to see comprehensive pictures of your organs and the surrounding areas.
• Laparoscopy: This is the only way a doctor can determine that you definitely have endometriosis. During the laparoscopy, a small cut will be made in your tummy and a laparoscope (a thin tube with a camera on the end) will be inserted through the cut. This allows the doctor to see where the lesions or growths are and their size and depth.
• A biopsy: During the laparoscopy, a small sample of the suspected endometriosis tissue can be taken. This sample will then be looked at under a microscope to confirm your diagnosis.

How is endometriosis treated?

Endometriosis currently has no cure. However, there are treatments that can help ease your symptoms and make the condition more manageable.

When determining the best treatment for your endometriosis, your doctor will consider:

• Your age.
• The severity of your endometriosis (stage 1–4).
• The severity of your symptoms.
• Whether you want children.

Some common treatment options for endometriosis are:

• Painkillers: Over-the-counter painkillers such as paracetamol and ibuprofen can help to relieve the pain and make your symptoms more manageable. However, over-the-counter painkillers may not be effective if your pain is severe.
• Hormone medicine: Hormone therapy causes your endometriosis patches to go through a cycle similar to the menstrual cycle. They can also slow the growth of endometriosis tissue, reduce your oestrogen levels and prevent new adhesions from growing. The most common hormone medicine is a group of medications called gonadotrophin-releasing hormone (GnRH) analogues which prevent ovulation, menstruation and endometriosis growth.
• Contraceptive medication: Contraceptives, such as the combined pill and the contraceptive patch, can help to reduce oestrogen and cause the uterus lining to become thinner. They can also result in shorter and lighter periods which can reduce the symptoms of endometriosis.
• Surgery: For some cases of endometriosis, surgery may be recommended to remove endometriosis patches. Removing patches of endometriosis can give significant relief from pain; however, the relief may only be short-term, as pain and other symptoms are likely to return when the patches regrow.
• Hysterectomy: If endometriosis is severe, a hysterectomy may be an effective way of treating endometriosis. However, this type of surgery may only be recommended if you are older, or you do not plan on having any children. A hysterectomy involves removing the womb, and in some cases, the ovaries and fallopian tubes if the damage from the endometriosis is severe. However, the ovaries will only be removed in extreme cases. Because a hysterectomy is major surgery, it will usually only be recommended in extremely severe cases, or as a last resort treatment. A hysterectomy is usually an effective way of treating endometriosis, although there is a small chance that the lesions will return.

Lifestyle changes that can help endometriosis

There are certain short-term and long-term changes you can make that can help to alleviate or treat the symptoms of your endometriosis and reduce the impact the condition has on your life.

Some lifestyle changes you can implement include:

Improve your diet

Research has shown a link between the foods you eat and endometriosis. Certain foods can worsen your symptoms, whereas others can help to reduce inflammation and balance your oestrogen levels. Those with endometriosis usually have higher levels of oestrogen. This hormone imbalance can lead to inflammation and pain and reducing oestrogen levels can help to relieve symptoms. Certain foods can help to reduce your oestrogen levels.

Foods high in fibre, such as fruits and vegetables, beans, lentils, chickpeas, whole-grain foods and flaxseeds can help to regulate your bowel movements and reduce any excess oestrogen in your body. Foods high in omega-3 fats, such as fatty fish (salmon, sardines and tuna), nuts, seeds, avocadoes, peanut butter and olive oil can also help to reduce inflammation.

Foods high in zinc can also help to regulate your menstrual cycle and foods high in magnesium can help to relieve menstrual cramps.

There are certain foods that can worsen the symptoms of endometriosis, including alcohol, caffeine, fatty meat, processed foods and sugar. Reducing the amount of these foods you have in your diet can also help to relieve your symptoms.

Exercise regularly

Exercise is a great way to manage your endometriosis and incorporating exercise into your day-to-day life can be beneficial. Exercise encourages your heart to pump blood around your body and can improve your circulation and the flow of oxygen to your organs, including those which are affected by endometriosis. Exercise also releases endorphins, which can be effective in relieving pain.

Furthermore, exercise has been found to reduce oestrogen levels, which can relieve inflammation, bloating and pelvic pain. Low-impact exercises, such as walking, swimming, cycling and yoga are particularly effective in dealing with endometriosis.

Reduce your stress

Stress and endometriosis are interconnected, with many people with the condition reporting higher chronic stress levels. However, stress can actually make endometriosis worse, as it increases inflammation and can lower your ability to deal with your symptoms.

Finding ways to reduce your day-to-day stress can help you to better cope with your symptoms, improve your sleep and reduce your pain.

Can you still get pregnant with endometriosis?

Many people with endometriosis worry about how their condition will affect their fertility. Although endometriosis can result in infertility, this is not true in all people who have the condition. People with stage 1 and stage 2 endometriosis usually do not have any issues getting pregnant, although in some cases it may take longer than expected. People with stage 3 and 4 endometriosis are more likely to experience difficulties getting pregnant and, in some cases, may experience infertility.

However, the stage of your endometriosis is not the only factor that can affect your fertility. The area of your reproductive system that is affected can also impact how easy it will be for you to conceive.

It is estimated that between 50% and 70% of people with endometriosis will have few difficulties conceiving. However, in some cases, endometriosis can make it more difficult or highly unlikely that someone will conceive naturally.

The link between endometriosis and fertility is not completely established; however, difficulties conceiving could be due to a number of things, including:

• Ovarian cysts: Ovarian cysts, which commonly occur in people with endometrioma, can block the release of the egg or block the egg from travelling down the fallopian tube.
• Adhesions: Endometriosis adhesions are clumps of thick scar tissue that develop in areas such as the fallopian tubes. The adhesions can narrow the fallopian tube and prevent the egg from travelling down or the sperm from reaching the egg.
• Reduced egg quality: Research has found that endometriosis can affect the quality of the eggs. Endometriosis can compromise blood and oxygen flow to the ovaries that can result in the eggs being unable to mature or becoming damaged.

Pain during sex is a common symptom of endometriosis. Someone who experiences pain during sex may be less likely to engage in sexual activity, reducing their chances of conceiving.

If you have endometriosis, it may be recommended that you first try to conceive naturally. If you do not conceive within 6–12 months, you will likely be referred to a fertility specialist. However, if you are over the age of 35 and have endometriosis, it may be recommended to begin seeing a fertility specialist immediately.

Endometriosis can also cause difficulties during pregnancy. Studies have found that someone with endometriosis is twice as likely to have an ectopic pregnancy. Their risk of miscarriage also increases from 20% to 25%.

Myths about endometriosis

Although endometriosis affects more than 1.5 million people in the UK, there are some inaccurate and damaging myths about the condition which are widely spread. These myths can make a diagnosis more difficult and can negatively impact people’s attitudes towards endometriosis and people who have the condition. Inaccurate myths can also affect the mental health of someone with endometriosis.

Some myths about endometriosis that need to be debunked are:

• Myth: Heavy and painful periods are normal.
• Fact: It is not normal for your periods to be heavy, extremely painful, or to last longer than 7 days. If you experience this, you may have endometriosis and should make an appointment with your GP.

• Myth: Endometriosis is easy to diagnose.
• Fact: Endometriosis takes an average of 7 and a half years to diagnose. In fact, the only accurate way to diagnose the condition is through surgery.

• Myth: The more severe your symptoms are, the most advanced your endometriosis is.
• Fact: Someone with an extremely mild case of endometriosis may experience severe and debilitating pain, whereas someone who has stage 4 endometriosis may experience no pain.

• Myth: Pregnancy can cure endometriosis.
• Fact: Some people with endometriosis find relief from their symptoms during pregnancy. However, pregnancy is not a known cure for endometriosis and symptoms usually return after the pregnancy.

• Myth: The symptoms are just a heavy period.
• Fact: The symptoms of endometriosis are not just a normal part of menstruation and should not be dismissed as a heavy period.

• Myth: Endometriosis can be prevented.
• Fact: Because there is currently no one clear cause of endometriosis, there is no known way to prevent endometriosis. Although you may be able to reduce your risk of developing the condition, for example, by lowering your oestrogen levels and eating healthily, there is no way to guarantee you will not develop the condition.

• Myth: Endometriosis can be cured.
• Fact: There is currently no known cure for endometriosis.

• Myth: Endometriosis can be contagious.
• Fact:Endometriosis is not contagious and cannot pass from one person to another, even if they are in a sexual relationship.

• Myth: Endometriosis is an infection.
• Fact: Because some other conditions such as pelvic inflammatory disease are a type of infection, many people assume endometriosis is also an infection. However, this is untrue. There is no infection involved and the condition cannot be cured with antibiotics.

Causes of endometriosis

There is no one clear cause of endometriosis. However, there are several possible causes that could result in you developing endometriosis, such as:

• Retrograde menstruation: Whereby menstrual blood that contains endometrial cells moves up the fallopian tubes and embeds in the organs of the pelvis or on the pelvic walls, instead of leaving the body during a period. The endometrial cells continue to grow, thicken and bleed during each menstrual cycle.
• Transformation of peritoneal cells: This involves the cells that line the inside of your abdomen being transformed into endometrial-like cells.
• Transformation of embryonic cells: Embryonic cells can be transformed by hormones such as oestrogen during puberty. This can then cause somebody to develop endometriosis.
• Endometrial cell transport: Endometrial cells can spread through the body in the bloodstream and lymphatic system.
• An immune system disorder: A disorder of the immune system can mean that your body is unable to recognise and destroy endometrial-like tissue that is growing in the wrong place (outside of your womb).
• Surgical scar implantation: Following a surgery such as a Caesarean section or a hysterectomy, endometrial cells can attach to the surgical scar and develop into endometriosis.

Although there isn’t one clear cause of endometriosis, certain factors can increase your likelihood of developing the condition.

These can include:

• Having an immediate family member, such as a parent or sibling with endometriosis.
• Starting your periods at a younger than average age (before the age of 11).
• Going through menopause at an older than average age.
• Not previously giving birth.
• Having a shorter than average menstrual cycle (less than 27 days).
• Having a heavier than average menstrual period that lasts for longer than 7 days.
• Having higher levels of oestrogen in your body.
• Having a medical condition that prevents you from passing blood during your menstrual period.
• Having a reproductive tract disorder.
• Being infertile.
• Having a low body mass index.

How can endometriosis impact a person’s life?

Endometriosis can impact a person’s life in many ways. The condition does not just impact your physical health but can also impact your mental and emotional health, your relationships and your self-esteem.

Those with endometriosis have a higher risk of mental health difficulties, including:

• Depression.
• Anxiety.
• Panic disorders.
• Substance use disorders.

There are several reasons why people with endometriosis are more likely to experience mental health difficulties. Studies have found that up to 68% of people with endometriosis experience psychological stress. Stress can be a big contributor to mental illness as long-term stress makes it more difficult for our bodies to remain in a normal state and impacts the way people deal with emotions.

One of the biggest contributors to this psychological distress is the difficulty in getting a diagnosis. Many people do not receive a diagnosis until years after they begin experiencing symptoms, with some people being misdiagnosed and given the wrong treatment. In fact, some endometriosis charities report that it takes an average of 7 to 8 years to receive a diagnosis of endometriosis.

Someone experiencing endometriosis may feel that their pain is not understood or that they are not being taken seriously. Many people who struggled to receive a diagnosis report that they were made to feel like they were exaggerating their symptoms or had a low pain threshold. Not only can these experiences impact their stress levels, but they can also affect a person’s self-esteem.

Endometriosis can also result in severe chronic pain, even in mild cases of the condition. This pain, and the other symptoms that go alongside it, can affect your quality of life. Your symptoms can result in you avoiding certain situations or being unable to do everyday tasks. On days when their pain is severe, some people cannot even leave the house. This can impact their professional lives, with them being unable to do their job or go to work, and their social lives, with them being unable to attend social events. Endometriosis can also impact your relationships, particularly if it affects your sex life.

Some people with endometriosis may find that they are unable to conceive naturally. The additional stress and upset this causes can also negatively impact your mental health and your relationships.

There may also be a link between endometriosis and suicide, with approximately half of people with endometriosis surveyed in a study by the BBC and Endometriosis UK reporting that they have had thoughts of suicide.

Living with endometriosis

Endometriosis can be a difficult condition to live with, with it potentially impacting your physical, mental, emotional and social health. However, it is possible to have a good quality of life, even in the most severe cases of endometriosis.

Seeking a diagnosis is the first step in improving your quality of life. A diagnosis allows you to access the relevant treatment and support. Although endometriosis can be difficult to diagnose, arming yourself with the relevant knowledge and tracking your symptoms can help to make a diagnosis easier. Once you have received a diagnosis, speak to your GP or gynaecologist about what treatments are available. In many cases, treatment can help to ease your symptoms, including your pain. You can also follow the lifestyle changes above, including improving your diet and increasing your exercise.

Living with endometriosis can be easier if you have a good support network. This could be your partner, your family and friends and your work colleagues. Although the people close to you can offer you physical and emotional support at home, work and in social situations, contacting an endometriosis support group can be extremely beneficial.

A support group can offer you information and advice and support from experts and other people who are also living with endometriosis. Endometriosis UK offers support groups throughout the UK and online. You can attend an in-person support group, join an online community or even call a helpline.

Alternatively, you can ask your GP or gynaecologist to refer you to a local endometriosis support group.

If you feel like your endometriosis is negatively affecting your mental health, ensure you speak to your GP to receive a mental health referral and have access to support and treatment.