Endometriosis diagnosis: Why is endometriosis so hard to diagnose? Women waiting 8 YEARS

Lorraine: Julia Bradbury discusses her endometriosis diagnosis

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Endometriosis is a condition where tissue cells similar to the type that grows inside the womb start growing elsewhere in the body. These cells bleed as a reaction to the menstrual cycle every month, but unlike the lining of the womb, are unable to leave the body. The result of this reaction is pain, inflammation, scar tissue, and a range of excruciating symptoms that are often debilitating. How do you get diagnosed with endometriosis?

It is estimated that a staggering 1.5 million women in the UK have endometriosis, which is a similar amount to the number of women in the UK who have diabetes.

Even though this painful condition is so common, the cause of it isn’t currently known.

Endometriosis runs in families, so it could be down to genetics or some ethnic groups may be affected more than others.

The largest accepted theory is to do with retrograde menstruation where your period blood flows backwards, rather than out of the vagina.

This causes endometrial cells in the blood to stick to the pelvic walls and other organs. Here, the cells thicken and bleed during every menstrual cycle.

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According to the NHS and Endometriosis UK, the main symptoms of endometriosis are:

  • pain in your lower tummy or back (pelvic pain) – usually worse during your period
  • period pain that stops you from doing your normal activities
  • pain during or after sex
  • pain when peeing or pooing during your period
  • feeling sick, constipation, diarrhoea, or blood in your pee during your period
  • difficulty getting pregnant
  • Heavy periods
  • Spotting or bleeding between periods
  • Loss of old or dark blood before period
  • Pain during an internal examination
  • Bleeding from the bowel
  • Diarrhoea, constipation and bloating, particularly during your period
  • Pain when passing urine
  • Tiredness/lack of energy
  • Back pain
  • Leg pain

However, women suffering from endometriosis will experience a number of other symptoms due to the impact the condition has on their lives. Endometriosis UK lists the following as symptoms:

  • Chronic pain
  • Fatigue/lack of energy
  • Depression/isolation
  • Problems with a couple’s sex life/relationships
  • An inability to conceive
  • Difficulty in fulfilling work and social commitments

How do you get diagnosed with endometriosis?

If you are experiencing symptoms of endometriosis, you should see your GP.

The GP will ask you about your symptoms and may examine your vagina and tummy.

The pill or another treatment may be recommended first and if these do not help you may be referred to a gynaecologist for further tests.

This normally includes an ultrasound scan, but it’s important to note that endometriosis isn’t visible on the scan.

The scan is useful for gynaecologists to see if there are any signs that may indicate endometriosis, but they cannot diagnose you then and there.

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The symptoms vary considerably from woman to woman and overlap with other conditions, so the only way to diagnose endometriosis is through a laparoscopy.

This is where a surgeon passes a thin tube through a small cut in your tummy so they can see any patches of endometriosis tissue.

The tube has a light source and a camera on the end and relays images of the inside of your abdomen or pelvis to the television monitor for the surgeon to see.

The surgeon will normally remove the endometriosis tissue during the procedure.

Why is endometriosis so hard to diagnose?

The process of getting diagnosed sounds fairly simple, right? It is, but women are waiting up to eight years (and sometimes even more) to get a diagnosis.

Endometriosis UK explains the reason for this long waiting time is down to how differently endometriosis manifests itself in different women.

Some women with endometriosis might have no period pain at all and only have fatigue, painful sex and problems with their bowels, while others may only have heavy bleeding during their periods.

Dr Shireen Emadossadaty, GP and partner on Bodyform #painstories project added: “There is a big problem in the world where people feel that women should just deal with their pain.

“A lot of women think painful periods are normal but actually, they’re not, particularly when the periods are starting to affect activities in your daily life.

“Opening up the conversation around period pain will encourage women to see their GP, to be persistent about their symptoms and hopefully we can bring down that diagnosis time.

“You’re not alone, period pain is common but it’s not normal and it’s not something you should be suffering with.”

As part of the Bodyform Pain Report, three women living with endometriosis shared the opinion that diagnosis time is so long because women’s pain is normalised.

One endometriosis sufferer from the UK said: “From periods to childbirth, women’s pain is seen to be ‘natural’ and expected. This belief permeates society and is reinforced.

“This is something that’s really key around this type of pain, that as women, or non-binary people with wombs, we’re taught to believe that ‘pain is normal;’ ‘you get pain every month’, ‘sex might be painful’, and I understand why people don’t go to the doctors.”

Another woman from France who has endometriosis said; “There is a push from society for women to ‘just get on with it’ – keep the pain to themselves and not bother anyone else with it. As a result, women suffer in silence.

“Women either self-censoring, they don’t want to attract attention to themselves, be considered a ‘weakling’, so women minimise what they are going through.”

Another said the leftover perceptions of women being ‘hysterical’ regarding their pain means those who complain run the risk of being branded untrustworthy and irrational.

She explained: “There is a pain gap between men and women: women are far more likely to have physical pain misdiagnosed as a psychiatric condition.”

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