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Education & The Ongoing Understanding of Endometriosis

Education of Endo is still required

There are great things happening in the Education and Research of Endometriosis. The future generations of young girls and women may not have to search and wait for diagnosis and treatment the way our current generation is.

Endo can occur in girls as young as 9 years old. According to Endometriosis Australia we need to raise awareness from the onset of the disease. Early diagnosis and treatment will reduce the long term impacts.  1 in 10 women suffer from Endo and this should be a concern. Research shows that it takes an average of 7 to 10 years to be diagnosed properly.  Monetary losses of $12,094.25 per individual per year are now raising interests in our parliament as it is also becoming a burden on the Health Care System.

We are Lobbying

There are women and men lobbying governments trying to raise awareness of Endometriosis.  In Australian politics, Gai Brodtmann, Member for Canberra has raised a motion in Parliament regarding this issues facing the awareness of Endo.   Australia has also nominated to host the 15th World Endometriosis Conference in 2023.

Nola Marino, Member for Forrest is an Endometriosis Ambassador and recounts her daughters story of misdiagnosis to severe health risk. Her story made me cry. It is a strong message to those not taking the disease seriously and for those looking for answers.

Women and organisations worldwide are campaigning for the same thing. They carry a torch to making education and knowledge more prevalent in our society. Younger women are standing up for their rights as women and telling their stories.  They are a strong force and I am proud to see them fighting for their rights.

 

What I’m doing to help myself

To understand Endo beyond being told I have Endo, I have joined Endometriosis Communities on social media. I feel as if I’ve tapped into a world that I didn’t know existed.  This Community is about expressing one’s feelings and experiences without being judged. It offers a platform to people looking for information and sharing information.

I have felt a sense of relief hearing the stories from other sufferers.  Relief that I have found others that have the same symptoms.  Relief that it isn’t all in my head. That the pain I feel has meaning.  I feel there is a place I can go to without judgement.

I have educated myself on Endo and I can now tailor my life around reducing the pain. People with Endo have suffered and are still suffering from the disease. Is is a relief that I don’t feel isolated any more.

Why is the disease dismissive?

At a young age we are taught that period pain is normal and we need to cope with it.  But period pain and heavy bleeding is not normal.  Periods are a vital sign of our health.  They tell us a story.  If they are irregular, painful and heavy, you need to go to your GP and get some answers.  If you aren’t happy with the consult, go to another GP until you find one that will listen.  Education is not just for the individuals experiencing the pain.  It is systemic.

Endo is not considered life threatening.  And it effects only women.  It is very rare to see it in men. It does effect our lives and quite often we hide it away from others.  Pain becomes part of our lives that we no longer feel what pain free is.

Endo Belly or IBS

Inflammation of Endo and IBS look and feel very similar.  When I had the mental strength to discuss the same information with doctors again after failing to find the problem myself, I would have a colonoscopy, endoscopy and pelvic ultrasound. This would be every two years when I couldn’t put up with the pain any longer. I always had my fingers crossed that a doctor would find something.  Each time I was told  that my results were normal and it was probably IBS. Go on a FODMAP diet is the common response.

How I wish I didn’t have intolerances to food.  I love food but know what it does to me.  It isn’t life threatening. It is a lifestyle choice. It is my choice not to eat things so my pain is not exacerbated.  And I don’t love it when people ask when I’m expecting because for two weeks out of the month, everything I put in my stomach makes me swell and feel like crap.

 

 Normal Belly               –                Endo Belly

 

Finding the right fit.

There were a lot of doctors visits where I  conveyed the same symptoms. I would get angry and try to figure out what I could do when the results kept coming back the same.

We expect that doctors should know what our problems are but this isn’t always the case.  A ten minute session to your GP isn’t going to help.  Ask for a double appointment.  Ask for a referral to a specialist. Make sure they know how important it is to you. You are giving the doctor time to ask the right questions and giving yourself enough time to convey your issues.

I was very fortunate to having a caring friend who told me that what I was going through wasn’t normal and I should really try a contraception method. I fought off taking the pill but have recently had an IUD put in.  The pain in my lower back has been reduced to the point that I wake up in the morning and move without sharp pains.  I think back to the years of pain and hate myself for not doing it earlier.

This has been backed up my exercise.  Karate has been my saviour.  It stretches all the muscles around the pelvic area and is great fun.  The benefits of exercise are amazing.

Seeking out new methods of relieving pain and what foods are good and bad are a relentless task.  If I read something that may help me in regards to what I should eat and how I should exercise, I’m the one giving it a go.  Anything to reduce my pain.

I consider myself to be one of the lucky ones.  I read what some of the girls have gone through and it saddens me. The number of surgeries. Not being able to or have difficulty trying to conceive.  The disease strips women of their rights to a life they may have dreamed about from an early age.

Lets raise awareness

I don’t want my daughter to suffer the way I have.  We have discussed periods and the possibility that pain may be associated with it.  I haven’t gone into detail as it is not age appropriate (she is nine). I’m confident my daughter will be educated and have the support if and when she starts asking questions or has symptoms that are associated with Endo.

Awareness is education. We need to get this topic into school.  It doesn’t need a whole class session to understand it.  The name and its symptoms are the key to ensuring the 2 girls out of 20 in the class don’t dismiss their problems as normal period pain. Seeking help early will reduce the possibility of the symptoms becoming severe.

If you or somebody you know have all or some of the symptoms associated with endo, please make an appointment to see your GP.  To assist the doctor, you can keep a 3 month diary of your symptoms to discuss your pain may.  Be sure to ask if endometriosis could be a factor. And if you believe strongly get a referral to see a specialist who deals directly with endo.  Period Apps are great for noting down symptoms and they are easy to record.

  • Pain that stops you on or around your period.
  • Pain on or around ovulation.
  • Pain during or after sex.
  • Pain with bowel movements.
  • Pain when you urinate.
  • Pain in your pelvic region, lower back or legs.
  • Having trouble holding on when you have a full bladder, or having to go frequently.
  • Heavy bleeding or irregular bleeding.

To find out more about what Endo is, you can read more about it in my previous Blog, What is Endometriosis and Why Didn’t I Know About It. In Australia contact www.endometriosisaustralia.org.

There are organisations worldwide that can assist.  Type in Endometriosis and your area and you will find some support groups.  If not, email me on helpme@raiganj.com.au and I will do my best to find the relevant information for you.

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