Endometriosis

What is endometriosis?

Endometriosis (en-doh-mee-tree-oh-sis) is when cells similar to those in the lining of the womb (uterus) grow in other parts of the body. Endometrial cells bleed during your period, and since there’s no place for this blood to go, it can cause inflammation, scar tissue and pain.

Endometriosis (often called "endo") is a chronic condition that can be debilitating in a number of ways. Aside from heavy periods and intense pain, it can cause depression, isolation and can affect social commitments and work.

Symptoms of endometriosis

Endometriosis can affect women and people who menstruate in different ways and to varying intensities. Symptoms include:

• Heavy, painful periods
• Fatigue
• Painful bowel movements
• Painful sex (during and after)
• Infertility

However, other symptoms sometimes reported are:

• Back and leg pain
• IBS (Irritable Bowel Syndrome)
• Irregular periods
• Pelvic pain

What causes endometriosis?

The cause of endometriosis remains unknown, but possible explanations include:

• Retrograde menstruation: Where some of the blood shed from the womb during your period backtracks, or travels down the fallopian tube
• Genetics: Some professionals think endo could run in families
• Lymphatic or circulatory spread: Endometrial tissue particles have been been found in the eyes and brain, suggesting that they can travel around the body through the lymphatic and circulatory systems
• Metaplasia: Where one type of cell changes into a different kind of cell, usually in response to inflammation. This would explain how endometriosis cells can appear spontaneously around the body, in people who have had a hysterectomy and in people who have had hormone therapy.

Endometriosis and IBS

Some symptoms of endometriosis and IBS (Irritable Bowel Syndrome) can be similar. If you’re experiencing IBS-like symptoms at around about the same time every month (or, if yours is irregular, whenever you have a period), then the cause could be endometriosis either on the surface of your bowel, or penetrating the bowel wall.

Symptoms reported in cases of endometriosis on the bowel include:

• Pain on opening the bowels
• Pain deep in the pelvis during sex
• In some cases, rectal bleeding during periods

Can endometriosis be treated?

There are various treatments for endometriosis, but there's not currently a cure. Some people choose to have a hysterectomy (a surgical operation to remove all or part of the uterus) to relieve symptoms, but that isn’t guaranteed to work, particularly if you have endometrial tissue in your bowels. 

Many endometriosis treatments aim to reduce the intensity of symptoms and allow you to live a more comfortable life. These include:

• Hormone treatment: Endometriosis responds to oestrogen, a female hormone, so some hormone treatments can work to reduce or block its production
• Surgery: A laparoscopy (keyhole surgery where a camera is inserted into the pelvis) can be carried out to remove any lesions, either by cutting them out or destroying them with a laser. While this can relieve symptoms, they can come back at any time
• Pain relief: Depending on the intensity of your symptoms, hot water bottles and painkillers may can help to manage endo attacks. Physiotherapy may also be an option, and some hospitals have pain clinics to support those with chronic pain. Your GP should be able to refer you.

Is endometriosis recognised as a disability?

No, endometriosis is not recognised as a disability in the UK.

Risk factors for endometriosis

Risk factors that may make you more likely to develop endometriosis include:

• One or more relatives (mother, aunt or sister) with endometriosis
• Starting your period at an early age
• Heavy periods that last more than seven days
• Short menstrual cycles (e.g. less than 27 days)
• Going through menopause at an older age
• Never giving birth
• Low body mass index (BMI)
• Higher levels of oestrogen
• Reproductive organ disorders
• Any medical condition that prevents the passage of blood from the body during menstrual periods

I think I've got endo - now what?

If your symptoms are affecting your everyday life, book an appointment to see your GP.

It can take a long time to diagnose endometriosis, due to similarities in symptoms with conditions such as PCOS (Polycystic ovary syndrome) and IBS. You might also need several different tests to find out if you have it. But don’t let that put you off. Find out what happens at your GP appointment.

Aside from receiving a diagnosis, seeking emotional support can be crucial. Talking to family and friends about it can ensure you have a network who will understand what you're going through and be there for you when you need.

As well as personal support, Endometriosis UK is a charity that supports those living with the condition, and you'll find communities of people who support each other and raise awareness of endo on social media.

If your mental health is being impacted by your condition, Shout is here for you. Text the word 'ENDO' to 85258 to talk to a supportive volunteer.