A woman lying down holding her stomach

What is endometriosis?

Your uterus gives you enough hassle on your period each month, but for people with endometriosis periods are more than just cramps, crying and chocolate. So what causes endometriosis? Is endometriosis a disability? And what are the symptoms? Read on as we explain everything you need to know about the condition and how it can be treated.

What is endometriosis?

Endometriosis (en-doh-mee-tree-oh-sis) is when cells behave like the ones found in the lining of your womb, which isn’t great if that’s not actually where they are. Endometrial cells bleed during your period, and since there’s no place for this blood to go, it can cause inflammation, scar tissue and a bloody lot of pain.

Endometriosis is a chronic condition and can be very debilitating in a number of ways. Aside from having heavy periods and intense pain, it can cause depression, isolation, and can also affect work and social commitments. It’s not fun.

Struggling with your mental health? Read this article on coping with depression.

Symptoms of endometriosis

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

  • Heavy and 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?

Not a clue. The definitive cause of endometriosis is unknown, but there are a few theories:

  • Retrograde menstruation. Sometimes, during your period, the womb lining can flow out through your fallopian tubes and into the abdomen. It’s thought that most menstruators experience this, but sometimes the body cannot get rid of this tissue.
  • Genetics. A classic. Often your family pass down heirlooms or fancy looking jewellery, but sometimes they can give you their lovely chronic conditions. How generous.
  • Lymphatic or circulatory spread. Endometriosis tissue has sometimes been found in the eyes and brain, and this could be due to the particles using our bloodstream as a free ride around our body. Pretty sure that’s a finable offence, right?
  • Metaplasia. It sounds like something fancy and clever, and it is. Metaplasia is when a certain type of cell morphs into another, usually due to a need to adapt after inflammation, for example. Smart. With endometriosis, this would explain how endometriosis cells appear spontaneously in various parts of the body. It would also explain endometriosis in menstruators who have had a hysterectomy, or in men who have had hormone therapy.

Endometriosis and IBS

The symptoms of endometriosis and IBS (Irritable Bowel Syndrome) can be quite similar. If you’re experiencing IBS-like symptoms at around about the same time every month (or whenever you have a period if yours tends to be less regular), then you might have endometriosis either on the surface of your bowel or penetrating the bowel wall, rather than IBS caused by anything else.

The specific 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, menstruators might also experience rectal bleeding during their period.

For more information about IBS, see this article..

Can endometriosis be treated?

There are various treatments for endometriosis, but currently there is no cure. Some menstruators might choose to have a hysterectomy (a surgical operation to remove all or part of the uterus) to relieve symptoms, but even that isn’t guaranteed to work, particularly if you have endometrial tissue in your bowels. 

Current 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 attempt to reduce or block the production of it.
  • 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. Sounds wonderfully dramatic. However, although this should relieve symptoms they can come back at any time without warning.
  • Pain relief. Much like with general period pain, hot water bottles and painkillers may be your friend depending on the intensity of your symptoms. 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 in the UK?

No, endometriosis is not recognised as a disability in the UK. There’s a decent argument that it should be in severe cases. Obviously there are people who might never get diagnosed because their endometriosis is relatively mild, but if you have it badly you know how much it can disrupt your life. 

While someone who has endometriosis isn’t automatically deemed disabled, anyone wishing to access disability benefits will be assessed against the criteria outlined by the good ol’ Department for Work and Pensions, which some people with endometriosis will be able to meet.

Risk factors for endometriosis

Although we don’t really know what causes it, there are several things that might make you more likely to develop endometriosis:

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

Oh, I think I have endometriosis… What now?

If you think you might have endometriosis, get yourself to see a doctor who can carry out some tests.

However, it’s worth mentioning that it can be tricky getting diagnosed due to endometriosis sharing symptoms with other conditions such as PCOS (Polycystic Ovaries Syndrome). But don’t let that put you off.

The only concrete way of getting a diagnosis is by having a laparoscopy. Any endometriosis tissue can be removed for examination.

Aside from receiving a diagnosis, seeking emotional support can be crucial. Talking to family and friends about it can ensure you have a little network who won’t mind if you flake on plans. They can also be in charge of the hot water bottle runs.

As well as personal support, Endometriosis UK is a charity that supports those living with the condition, and even searching ‘endometriosis’ on Twitter can reveal a community of people who support each other and raise awareness.

We know that living with endometriosis is a right pain. Literally. It can be easy to assume that it’s just a bad period, but if it’s affecting your daily life then it’s definitely worth getting checked out.

If you’re experiencing anything unexpected with your body, check out The Mix’s body problems resources for help figuring out what’s going on.

Next Steps

By The Mix Staff

Updated on 22-Nov-2022