Endometriosis

What is endometriosis?

Endometriosis is a long-term condition where cells similar to those in the lining of the womb (endometrium) grow elsewhere in the body, most often in the pelvis around the ovaries, fallopian tubes and around the bladder or bowels.

Like the womb lining, this tissue responds to your hormones and bleeds during your period, but because it has no way to leave the body, it causes inflammation, pain and scarring.

Endometriosis affects people born female, including transgender men and non-binary people, from their first period through to menopause.

Symptoms of endometriosis

Symptoms vary a lot between individuals. Some people have no symptoms at all, while others with only a small amount of endometriosis have severe symptoms, so how much tissue you have doesn't necessarily match the severity of symptoms.

The most common symptom is pelvic pain, which often changes with your menstrual cycle and is usually worse just before and during your period. You might also have:

• severe period pain that stops you doing your normal activities
• heavy periods, where you need to change your pad or tampon every 1 to 2 hours, or you bleed through your clothes
• pain during or after sex
• pain when you poo or pee, often worse during your period, sometimes with a little bleeding from your bowel or bladder at this time
• fatigue, bloating, nausea, diarrhoea or constipation
• difficulty getting pregnant.

Rarely, endometriosis is found outside the pelvis, such as in the chest, which can cause pain or bleeding linked to your cycle, breathlessness or coughing blood. Living with endometriosis can also affect your mental health, including low mood and anxiety.

Causes and risk factors

The exact cause of endometriosis isn't known, and it's likely there are several reasons why some people develop it and others don't.

One theory is retrograde menstruation, where some menstrual blood flows backwards through the fallopian tubes into the pelvis instead of leaving the body. Another is that hormones cause cells outside the womb to transform into cells similar to the womb lining.

Researchers are also looking at a possible link with the immune system, since people with endometriosis have higher rates of other immune-related conditions, such as lupus, multiple sclerosis and inflammatory bowel disease.

You're more likely to develop endometriosis if your mother or sister has had it, suggesting genetics play a role, though a family history isn't necessary to develop the condition.

Are there different stages of endometriosis?

Endometriosis is usually classified into one of four stages:

• Stage 1: Minimal
• Stage 2: Mild
• Stage 3: Moderate
• Stage 4: Severe.

This is based on where the tissue is found, how deep it goes, how much scarring there is, and the size of any cysts.

Minimal and mild endometriosis involve shallow patches with little scarring, while moderate and severe endometriosis involve larger cysts (endometriomas) and deeper, more extensive scarring.

The stage doesn't necessarily match how severe your symptoms are; some people with minimal endometriosis have severe pain, while some with severe endometriosis have mild symptoms or none at all.

Difficulty getting pregnant is more common with moderate to severe endometriosis.

How is endometriosis diagnosed?

Endometriosis can take a long time to diagnose. Worldwide, the average time from first symptoms to diagnosis is estimated at 4 to 12 years.

There's no blood test for it yet, it doesn't always show up on scans, and its symptoms overlap with other conditions, such as adenomyosis, fibroids, pelvic inflammatory disease and irritable bowel syndrome.

Your GP will ask about your symptoms and whether any close relatives have had endometriosis. They may examine your abdomen and pelvis, including an internal examination (chaperones will usually be offered and can also be requested), and arrange blood tests. If they think you might have endometriosis, they may refer you to a gynaecologist, or offer medicines to help with your symptoms in the meantime.

Further tests can include an ultrasound scan (over your tummy or internally), an MRI scan, and a laparoscopy – a keyhole procedure under general anaesthetic where a camera is passed through a small cut in your tummy to look directly for endometriosis.

A laparoscopy is the only way to confirm the diagnosis for certain, and it's also possible to treat areas of endometriosis during the same procedure. A normal ultrasound or MRI doesn't rule out endometriosis.

How is endometriosis treated?

There's no cure for endometriosis, but treatment can help manage symptoms such as pain. Your doctor will talk to you about the risks and benefits of each option, taking into account your symptoms, your stage of endometriosis, and whether you're hoping to become pregnant.

Non-surgical treatment

Pain relief is usually tried first, ranging from over-the-counter paracetamol and ibuprofen to stronger prescribed painkillers. If these aren't enough, you may be referred to a specialist pain management team, which can include physiotherapists and psychologists, since approaches such as cognitive behavioural therapy (CBT), alongside physiotherapy, can also help reduce pain and improve quality of life.

Hormone treatments can ease pain by reducing bleeding and inflammation, usually by stopping or lightening your periods. Options include the combined contraceptive pill or patch taken continuously, a hormone-releasing intrauterine device (IUD), and progestogen-only options such as an injection, the mini pill or an implant.

It's recommended you give a hormone treatment at least 3 to 6 months to work. Most of these treatments are also contraceptives, so you won't be offered them if you're trying to get pregnant, though they don't affect your fertility in the longer term once you stop.

If these don't help enough, GnRH agonists (injections that temporarily stop your ovaries producing oestrogen and progesterone, causing a temporary menopause) or aromatase inhibitors may be considered. Hormone replacement medicine is often given alongside a GnRH agonist to ease menopause-type side effects.

Surgical treatment

Surgery may be offered if other treatments aren't working, if you have severe endometriosis, or if it's affecting your fertility.

Almost all endometriosis surgery is done by keyhole (laparoscopic) surgery under general anaesthetic, cutting out or destroying the endometriosis tissue and any related cysts using heat or a laser.

Depending on how extensive the endometriosis is, surgery can take around 45 to 90 minutes for less severe disease, or over 2 to 3 hours for severe cases needing more extensive removal.

It's usually done as day surgery, though an overnight stay may be needed if your bowel or bladder is also involved, or if complications arise. Occasionally, more extensive disease needs open surgery rather than keyhole surgery.

With laparoscopic surgery, most people return to normal activities within 1 to 2 weeks. Open surgery takes longer than this.

Surgery often relieves pain and can improve your chances of becoming pregnant, whether naturally or with fertility treatment, though symptoms can return within a few years.

In some cases, doctors may also discuss removing your womb (hysterectomy), with or without your ovaries. This isn't necessarily a cure for your endometriosis, though it may help with other symptoms, and it's usually only considered if you don't wish to become pregnant.

When should I see a doctor?

See a GP if you think you might have endometriosis, if your symptoms are affecting your everyday life, work or relationships, or if you've had treatment already but your symptoms haven't improved or have got worse.