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Your guide to endometriosis

Endometriosis affects 10% of women in the UK. For some, it takes several years to receive a diagnosis. For others, it only becomes apparent when they start trying to conceive.

Our fertility guides

Receiving a diagnosis for endometriosis can be overwhelming and emotional, especially if you're unsure what it actually is. Whether you've known for some time, have recently received a diagnosis of endometriosis or are unsure if you have it, we're here to provide the support you need as you navigate endometriosis and your fertility.

In this guide, we aim to cover:

- What endometriosis is and what causes it

- The common signs to look out for

- How it affects your fertility

What is endometriosis?

Endometriosis is a condition where cells similar to those found in the uterine lining grow outside of it. These cells most commonly grow in the ovaries and pelvis but can affect other areas, including the bladder and bowel.

Endometriosis has four stages, each categorised by the location, size and depth of the tissues growing.

Stage one - minimal: Small spots of endometriosis that cause inflammation in or around the pelvic cavity.

Stage two - mild: Light lesions and shallow implants can develop on the ovaries and pelvic lining.

Stage three - moderate: Implants are deeply embedded in the ovaries and on the pelvic lining.

Stage four - severe: Deep implants on the ovaries and pelvic lining. May also include lesions on the fallopian tubes and bowels.

What are the causes of endometriosis?

The cause of endometriosis remains unknown, however, there are hormonal, genetic and immune influences that may enhance your risk of the condition.

Hormonal factors

Most women experience menstruation retrograde, which occurs when the uterine lining or menstrual blood flows backwards through the fallopian tubes into the pelvis. This tissue is usually naturally cleared throughout the menstrual cycle, however, for those that can't, the tissue grows and attaches itself to the pelvis instead.

Genetic influence

There is some evidence to suggest that endometriosis may be hereditary. This means that if a biological family member, for example, a parent or sibling, has the condition then you are at increased risk of developing it yourself.

Immune system

The immune system plays a pivotal role in clearing away endometrial tissue found outside of the uterus. For those with a weakened immune system, this becomes more difficult allowing the tissue to grow.

Condition

What are the symptoms of endometriosis?

Endometriosis can present itself in different ways in different women. Some will experience symptoms from as soon as they get their first period, whereas others may remain unaware of the condition until later in life. There are several signs of endometriosis which can vary in intensity. It's important to be aware of the signs and when to contact a doctor.

Common signs of endometriosis

Most women with endometriosis who display symptoms will experience:

- Severe pelvic pain, often associated with menstrual periods

- Painful intercourse

- Heavy periods and excessive bleeding

- Spotting between periods

- Tiredness and exhaustion

Less common signs of endometriosis

In more severe cases of endometriosis, you may experience:

Painful urination or bowel movements
Severe leg pain
Coughing up blood

Read more about the symptoms of endometriosis here.

When to see a doctor

For many with endometriosis, the condition can impact their daily life, with symptoms making it difficult for them to complete simple tasks.

If you're concerned about any symptoms you are experiencing, we recommend contacting your GP immediately.

How is endometriosis diagnosed?

Diagnosing endometriosis can be difficult and this can take up to eight years on average. However, there are tests that can be carried out to detect the presence of endometrial tissue in the pelvis.

These include:

- Imaging tests such as an ultrasound or MRI may be used to assess the organs, pelvis and tissues to determine where endometriosis is present.

- A laparoscopy is the best way to diagnose endometriosis and involves a camera being passed into the pelvis via a small cut in the stomach.

How does endometriosis affect fertility?

It's natural to be concerned about the potential impact that endometriosis may have on your fertility. Up to half of women with the condition will experience infertility to some degree. For example, those with mild symptoms may take longer than usual to conceive naturally, whereas those with more severe symptoms will likely need fertility treatment.

Because the condition affects everyone differently, we recommend having some fertility tests done to understand your specific circumstances.

Some of the ways we know that endometriosis can affect fertility include:

- Damage to the reproductive organs

- Scarring or blocking the fallopian tubes

- Inflammation which can affect egg reserve, fertilisation and implantation

Fertility treatment for endometriosis

Many people with endometriosis will conceive naturally, though it may take a little longer than normal. If you're concerned about your fertility, or are undergoing surgery to help manage your symptoms of the condition, there are options you can consider for trying for a family either now or later on.

Fertility testing

Whether you're trying to conceive or would like to in the future, a fertility assessment will give you an overview of your fertility health, as well as your likely response to fertility treatment if required, supporting you on your journey to parenthood.

Mother, father and baby IVF success-rates

In vitro fertilisation (IVF)

IVF is a common fertility treatment for those with endometriosis. During IVF, hormone medication is used to stimulate egg growth. Eggs are then retrieved from the ovaries and fertilised with the sperm of your partner, co-parent or a donor.

Egg freezing

If you're undergoing surgery to remove your womb or ovaries to help manage your endometriosis symptoms, you may wish to freeze your eggs as a way of preserving your fertility so that you can try for a baby at a later point.

Our endometriosis stories

We've helped hundreds of people with endometriosis achieve their dreams of parenthood. Read more about their experience of conceiving with endometriosis.