Endometriosis: why is it so hard to diagnose?

Endometriosis is a very common and very painful condition that can lead to infertility – so why can it take some women years to get a diagnosis?

Endometriosis

Endometriosis is a condition affecting women, causing painful periods, painful sex, and occasionally leading to infertility. It’s relatively common, affecting around 1.5 million women in the UK. It has a severe impact on the quality of life of the women who experience it, and can be debilitating.1 Despite this, getting a diagnosis can be a long and difficult process. 

Recent research shows that, on average, there are 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis.2 But why, and what can be done?

What is endometriosis?

Endometriosis is a condition which causes womb tissue (endometrium) to show up in other parts of the body. From the ovaries to the bowel, these womb cells can appear in a range of places. With every period these tissue deposits bleed too, causing inflammation and scarring.3 This leads to severe pain and related health problems, including infertility.

Endometriosis can affect any woman or girl who is menstruating, and doesn’t normally affect those who have gone through the menopause.

Symptoms of endometriosis

Symptoms of endometriosis are different for each person. Not all women get all of the symptoms, and the severity varies widely between women. However, common symptoms of endometriosis include: 

  • Severe period pain
  • Heavy periods 
  • Pelvic pain
  • Painful sex 
  • Pain when going to the toilet  
  • Blood in your poo
  • Feeling tired all the time
If you have any or all of these symptoms, you should make an appointment to see your GP.

Diagnosing endometriosis

The only conclusive way to diagnose endometriosis is to have a laparoscopy. In this procedure, a surgeon inserts a small camera into the pelvis via a small cut near the navel. The surgeon can then look for signs of endometriosis. If they find it, the endometrium tissue can be treated then and there or a sample might be removed for testing.5 

Getting diagnosed with endometriosis can take a long time. The main reason for this is that the symptoms are very similar to the symptoms of other conditions. There are lots of other reasons that can cause period pain, painful sex and pain going to the toilet – and these all have to be ruled out.

Diagnosing endometriosis is also complicated as not every woman has every symptom, and the severity of the symptoms also varies between women.

Getting a faster diagnosis

Keep a symptoms diary

The best thing you can do to help your doctor diagnose you is to keep a diary for a few months, detailing what symptoms you have, when they occur, and how severe they are. This will help them to spot patterns in your symptoms, and also ensures you don’t forget any vital details.6

Share as much as possible

While the symptoms of endometriosis involve several bodily functions commonly felt to be ‘taboo’, you need to share as much detail with your doctor as you can. Some people find it helpful to book a double appointment, to give themselves more time to discuss their experiences.2

Endometriosis

Ask for a referral 

If you’re still concerned, you can ask to be referred to a specialist. Endometriosis can only be conclusively diagnosed by a laparoscopy, carried out by a gynaecologist.

Treating endometriosis

Once diagnosed, there are many treatments available for endometriosis. There isn’t a cure, but there are ways to help ease and manage the symptoms. 

  • Anti-inflammatory painkillers - Over-the-counter painkillers such as ibuprofen help to manage milder endometriosis symptoms
  • Hormones - Hormonal contraceptives such as the combined pill relieve symptoms by blocking the production of oestrogen, stopping the endometriosis from growing
  • Surgery - An operation, such as endometrial ablation, can relieve symptoms by removing endometriosis, although it can grow back. This is often done using a laparoscopy, during which the surgeon cuts out the endometrial tissue or destroys it using a laser7

You can find out more about endometriosis in this Q&A session with three of our consultant gynaecologists. If you’re concerned about your symptoms and you think you might be experiencing endometriosis, an appointment with our specialists is a good next step. You can also read about two of our patients' experiences with endometriosis who received treatment at BMI Healthcare. 

To find out more call us on 0808 101 0337 or
make an online enquiry.

Sources

1https://www.endometriosis-uk.org/understanding-endometriosis
2https://www.endometriosis-uk.org/getting-diagnosed-endometriosis
3http://www.independent.ie/life/health-wellbeing/health-features/endometriosis-why-does-it-take-so-long-to-diagnose-31005969.html
4http://www.nhs.uk/Conditions/Endometriosis/Pages/Introduction.aspx
5https://www.endometriosis-uk.org/getting-diagnosed-endometriosis
6https://www.endometriosis-uk.org/visiting-your-doctor
7https://www.endometriosis-uk.org/endometriosis-treatment

You may also like…

Eye health can be easily neglected as some serious eye problems don’t have any visible symptoms.
This is why you need to make regular trips to the ophthalmologist. Read more

We’re all aware of how important sleep is for our health. But are we getting enough? And, if not, how can we change that?
Read more

It's World Diabetes Day on 14th November – let's look more closely at the symptoms and treatment of both type 1 and type 2 diabetes.
Read more

It's the start of the celebration season, but how much is too much, and how is it affecting your health?
Read more

There no waiting lists when you pay for yourself. Download our treatment price list
Sign up to Health Matters updates