What is endometriosis and why is it so hard to diagnose?

Tens of thousands of women across Wales are living with hidden pain caused by endometriosis.

Endometriosis is a chronic condition that causes debilitating pain and can start when women begin their period.

One in ten women lives with the condition but the wait in Wales to get a diagnosis is longer than anywhere else in the UK and can take up to 9 years.

  • What exactly is endometriosis?

It’s caused when tissue similar to the lining of the womb starts to grow elsewhere.

Each month cells react in the same way as those in the womb, building up and then breaking down and bleeding.

But unlike cells in the womb that leave the body as a period, this blood has nowhere to go and can't escape the body.

This can cause inflammation, pain and the formation of scar tissue. The condition is as common as asthma or diabetes.

Some women say even morphine doesn't help ease the worst of the pain. Credit: Wales this Week
  • What are the symptoms?

Symptoms vary from woman to woman and can include:

  • Chronic pain

  • Fatigue/lack of energy

  • Depression/isolation

  • Problems with sex life/relationships

  • An inability to conceive

  • Difficulty in fulfilling work and social commitments

Even with a diagnosis, some women in Wales are being told they’ll have to wait up to 7 years for treatment within the NHS.

  • Why is endometriosis so difficult to diagnose?

The NHS says symptoms can vary considerably, and many other conditions can cause similar symptoms.

A standard ultrasound imaging test won't definitively tell your doctor whether you have endometriosis.

Specialists say the only definitive way to diagnose endometriosis is by a laparoscopy which involves the insertion of a camera into the pelvis via a small cut near the navel.

The surgeon uses the camera to see the pelvic organs and look for any signs of the condition. 

Video shows the removal of scar tissue during a laparoscopy

  • How is endometriosis treated once diagnosed?

A telescope is put through the navel, the belly is filled up with gas so doctors can look at the inside of the abdomen with accurate magnification.

In extreme cases, the endometriosis glues the pelvis together so the bowel is stuck to the back of the uterus.

The ovaries can have 'chocolate cysts' in them which are old blood from endometriosis.

They can stick together and the patient ends up with a completely frozen pelvis which is quite challenging to pick apart, according to experts.

But even once a woman has had an operation to remove the endometriosis the condition can grow back.

Currently, there is no cure for the condition and private treatment can cost thousands of pounds.

One woman told ITV Wales in order to avoid the NHS waiting times she was quoted by a private doctor over £13,000 for a hysterectomy and the removal of her endometriosis.

Mr Richard Penketh is a consultant gynaecologist that has carried out many operations for the condition.

He said: "I think the resources to manage it all are just not there. I don’t think enough investment has been made in endometriosis care within the health service over the last decades really. 

"There isn’t as yet a complete cure for endometriosis, even a hysterectomy and removal of the tubes and ovaries, we always counsel that but it may not resolve the pain.

"Attitudes, resources and more education and funding, really important resources, so endometriosis isn’t pushed away."

Richard Penketh says the resources to manage this condition are 'not there'. Credit: Wales this Week

The Health Minister, Eluned Morgan MS told ITV Wales that she wants to make sure more focus is put on women’s health issues including endometriosis.

  • How is the condition affecting women's lives?

One woman told ITV Wales her pain is so excruciating it leaves her vomiting.

Some who have been living with the condition say their social life, work-life and mental health are heavily affected.

Some also say they are dismissed by doctors who say their pain is just period pain.

But experts say any pain that interrupts your daily life is not normal.

Amy-Leigh Dyason has stage four endometriosis, which is as serious as the condition can get.

She says she feels a "stabbing, burning and pulling pain".

"It’s like I can actually feel my organs are pulling or stuck together, it doesn’t feel right. Fatigue to the point that it feels like I’m walking through mud", she added.

"I have it on my pelvis, my bowel, my bladder, I have rectovaginal endometriosis as well which is where the rectum and vagina are stuck together with endometriosis tissue."

One woman said that the only way to manage the pain is by using a scolding hot water bottle. Credit: Wales this Week

She has burned her stomach from using hot water bottles because that is the only way she says she can manage the pain.

She said: "The pain from the burn is less painful than the actual endometriosis I’m suffering from.

"This red mark, red-purple mark you can see are from where I’ve permanently damaged my skin from using my hot water bottles."

You can find out more about endometriosis in Wales This Week: Living With Pain, on ITV Wales at 8pm, April 12.