Endometriosis: why is it so hard to diagnose?


We’re doing research into what it’s like to live with endometriosis. Please help us by taking part in our Endometriosis Survey.


Endometriosis is a very common and very painful condition that can lead to infertility among other issues – 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

There is currently no cure for endometriosis, however there are treatments available.

Medical treatments may help to manage the symptoms. These include anti-inflammatory painkillers and hormone treatments. Some hormone treatments are designed to slow the growth of endometriosis.

To remove the endometriosis growths, you may be recommended surgery. This is commonly performed as a laparascopic (keyhole) procedure, but in severe cases it may require open surgery.

Ablation surgery

When superficial endometriosis is identified in your pelvis during your laparoscopy, thermal energy can be applied on the spots of endometriosis to evaporate and therefore treat them. Unfortunately, if the endometriosis is deep in the tissues, ablation technique may fail to treat it.

Excision surgery

When superficial or deep endometriosis is identified in your pelvis during your laparoscopy, these areas are cut out and the specimens are sent to the laboratory to confirm the presence of endometriosis. This treatment method is believed to be more effective in treating deep infiltrating endometriosis.

You can find out more about endometriosis in this Q&A with 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. 


We’re doing research into what it’s like to live with endometriosis. Please help us by taking part in our Endometriosis Survey.


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
3https://www.endometriosis-uk.org/endometriosis-symptoms
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

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