Endometriosis, sometimes called endo, is a painful condition where tissue similar to the lining of the womb (uterus) grows in other parts of the body.
Often, this happens around the ovaries, fallopian tubes and other parts of the pelvic region. Originally, it was thought that it could only affect these areas. But now we know that this ‘endometrial tissue’ can grow on any organ in the body.
It can affect anyone who has a womb, at any age, no matter their ethnicity or background. Endometriosis is a long-term condition. And it can take some time to get diagnosed and find the right treatment.
In the UK, endometriosis affects 10% of people with wombs and it can have a major impact on their lives. It can cause long-term (chronic) pain, as well as problems with fertility and pregnancy.
What are the symptoms and effects of endometriosis?
The tissue that lines the womb is called the endometrium. This tissue works to prepare the womb for pregnancy as a part of the menstrual cycle. It gets thicker at the same time that your body releases an egg (ovulation). Then during your period, this tissue breaks down and leaves the body.
With endometriosis, the endometrium tissue that has grown outside of the womb does the same thing. But, because it’s in a place it should not be, it has nowhere to go. It cannot easily leave the body, so it causes pain and inflammation. And more tissue starts to build up.
People who have endometriosis can experience:
pain, often in the stomach, pelvic area and lower back, that may get worse during periods and ovulation
pain during sex
prolonged, painful and heavy periods
diarrhoea, constipation, vomiting and intense cramping during your period – it can be painful going to the toilet, and there might be blood in your pee
How is it diagnosed?
Endometriosis is usually diagnosed by an ultrasound scan or by looking directly into the pelvis through a laparoscopy, sometimes known as keyhole surgery.
This is where a surgeon makes a small cut near the belly button and uses a small tube with a camera to look for signs of endometrial tissue in the pelvis.
Getting a diagnosis can be hard – in fact, it takes an average of 8 years for people with endometriosis to get a diagnosis. Sometimes the symptoms are confused with other illnesses like IBS or ordinary period pain. Sometimes they’re not taken seriously enough.
Endometriosis does not always show in examinations or scans, either. That’s why it often takes a specialist to see the endometrial tissue during keyhole surgery before you’re properly diagnosed.
How is it treated and how can contraception help?
If you use a method of contraception that stops or reduces bleeding, then this can sometimes improve endometriosis – for example, the:
combined pill, if taken continuously
contraceptive patch, if used continuously
contraceptive ring, if used continuously
The progestogen only pill, the injectable contraceptive, or the contraceptive implant may help if you are someone whose periods stop while taking these methods.
It’s important to note, though, that these methods may also cause irregular bleeding, which in turn may make endometriosis worse.
Most other treatment options are focused on reducing symptoms so it’s easier to do daily activities. Most people need a mix of treatments to manage the condition. As well as the hormonal treatments that may help by reducing the build-up of tissue in the body, other treatments include:
pain relief ranging from heat packs and ibuprofen to physiotherapy
laparoscopic (keyhole) surgery to remove damaged tissue – though not all endometrial tissue can be removed this way
surgical removal of the womb and ovaries (hysterectomy)
What to do if you think you have endometriosis
Speak to your GP. Keep a diary of your symptoms. This will help your GP understand your symptoms, offer the appropriate treatment and make the correct referrals.
If the treatment they offer does not help, they may refer you to a specialist. If they do not do this, you can ask for a referral to a specialist or ask for a second opinion. You should be referred to a gynaecologist who can take scans and carry out further tests.