Endometriosis diagnosis often missed despite being as ‘common as asthma and diabetes’


March 29, 2019 10:13:32

Imagine having a growth that has caused the insides of your body to stick together, but complete removal of it would compromise your organs.

Key points:

  • About 700,000 women across Australia have the condition which can be difficult to diagnose
  • An IVF specialist says very little is known about the condition and it has different presentations
  • Many women may have endometriosis but have no symptoms

That is one of many presentations of endometriosis.

By the time Rebecca Drake from Casuarina in Northern New South Wales discovered her endometriosis, it was stage four.

“They told me it’s as bad as it gets, and that was a complete shock,” Ms Drake said.

“Basically, it was a frozen pelvis, everything was so stuck together, when they showed me pictures it looked almost like a sticky spider web scar tissue.

“My ovaries were stuck to my uterus, there was just no room in there whatsoever.”

Ms Drake’s laparoscopy was a result of searching for answers as to why she wasn’t falling pregnant.

She sought the help of IVF Specialist Dr Kee Ong on the Gold Coast.

“Both my tubes were completely blocked, so there was no way it was going to happen naturally, there was no space for anything to grow,” she said.

“Dr Ong was able to remove 90 per cent of it but he said he couldn’t get it all because it would start compromising my organs.”

Three laparoscopes later, she is now a mum to a 14-month-old boy, and is 11 weeks pregnant with her second baby.

According to Dr Ong, the disease affected about 700,000 women across Australia.

“Endometriosis is a condition that has a lack of awareness, given that it is as common as asthma and diabetes,” Dr Ong said.

“We know very little about it.

“It’s a diagnosis based on keyhole surgery, and the other issue with this disease is that it has different presentations.”

Pain was one of the most common complaints of the disease.

It was often something many women would complain of but write of as normal during their menstrual cycles.

Ms Drake did suffer pain.

“I guess thinking back there were times when I would get a pain attack, I’d be holding my breath, laying in the foetal position waiting for the pain to stop,” Ms Drake said.

“It was like a stabbing, grinding pain, it’s hard to explain.

“I just managed it by to taking pain relief and heat pack.”

No symptoms

Dr Ong said while pain could be an obvious sign, there were many women who could be missed because they showed no symptoms.

“The misconception out there is that people feel they have to have a very significant amount of pain for them to think they have endometriosis,” Dr Ong said.

“Again, the presentation is so variable … you can have bowel disturbance, painful period it is a condition that is hard to establish.”

Candice Scott, from Ashmore on the Gold Coast, did not suffer any obvious ongoing pain or symptoms of endometriosis.

Only when investigating an episode of pain due to ruptured cyst did she make the discovery.

Ms Scott booked in a laparoscopy with Dr Ong because this was a new pain.

She said it came as a complete shock when told she had endometriosis.

“He [Dr Ong] was even shocked at how severe it was, and that I wasn’t getting any pain at all,” Ms Scott said.

“I don’t think I had the signs, I mean I was fatigued but that could have been other things.

“Kee said it had been in there for eight to 10 years, that’s how bad it was.

“It was all up my bladder wall, my pelvis and uterus were a mess.”

Ms Scott said she found it “kind of scary” that some people would not know they had endometriosis.

Misdiagnosis and misunderstood

Despite the absence of period pains, she did remember asking her doctors about an onset of pain when she was 17.

“I went to the doctors and they said it was my bowels and probably IBS (irritable bowel syndrome), so whenever I had any sort of pain, which I rarely got, I would think it was my bowel,” Ms Scott said.

Ms Scott said she had been to about five different doctors and not one had asked her about her menstrual cycle and it wasn’t until she came to the Gold Coast that someone suggested it could be endometriosis.

Since her laparoscopy, she said the pain had 100 per cent gone.

Awareness and fertility

Thanks to celebrity cases like Emma Watkins from the Wiggles and personality Sophie Monk, more people have become aware of the condition, but Dr Ong, who treated Ms Monk, said more awareness was needed.

“With any medical condition early diagnosis is always a better way to go, because they can better manage and be fully informed on the impact of this on their reproductive health,” Dr Ong said.

“Because 30s is the new 20s — people are having children later in life.

“What we do know is that it can have a long-term impact on women’s health from quality and reproductive point of view, that’s why it’s important that we diagnose and manage from early on.

“Probably up 45 per cent of them will struggle to fall pregnant, so we do have good data that shows that if we remove the endometriosis, they have a better chance of pregnancy by themselves.

“What I would say though is, if someone has consistent period pain, do not accept it as normal, further investigation is required to make sure it is not endometriosis.”

While you’re here… are you feeling curious?




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