Delayed diagnosis left me menopausal at 21 - urgent help needed

The Issue

I am 21, I am going through menopause, I suffer from chronic pelvic pain, I am in constant agony and have to self-cathedarize - which would have been avoided if my endometriosis was diagnosed earlier.The longer it takes to get a diagnosis, the more the endometriosis can grow and the more damage it can cause. In the 6 years it took for my diagnosis, I had my appendix removed, I had two other surgeries looking for infections in my intestines and I suffered from excruciating pain.  

The pain is crippling - it’s taken control. I’ve lost my job, my volunteering roles, can't attend university, it’s destroyed my relationships and my mental health, I have lost all confidence and worst of all - I have had the menopause forced on me at 21 years old.

I’ve been passed from pillar to post between over 60 doctors, 40 “specialists”, prescribed over 25 different types of medication and had 4 incredibly invasive surgeries. It took 6 years of unnecessary appointments, treatments and surgeries, and thousands of dollars, that could have been easily avoided.

Right now, despite 1 in 10 Aussie women suffering from endometriosis, the disease is given minimal Government funding for research and education programs amongst doctors and patients. This means GPs are left clueless and patients are continually misdiagnosed.

Common amongst young girls, doctors dismiss our pain as period cramps. We’re sent away from emergency departments for over-reacting. I was even told it was all in my head and referred to a psychologist.

Endometriosis has snatched away my future. I need the Health Minister, Greg Hunt and the CEO of the NHMRC Anne Kelso, to urgently step in and stop ignoring our desperate, helpless pleas.

Please sign and share widely to help shorten diagnosis times for endometriosis patients by allocating funding to improve patient outcomes and educating GPs on symptoms. Don’t let another 21 year old miss out on her future.

Some quick facts about endometriosis in Australia:

-Endometriosis occurs when a type of tissue, similar to the one that lines the uterus (endometrium) is also found outside the uterus. Endometriosis usually affects the reproductive organs, it is frequentlly found in the bowel, bladder and has been found in muscle, joints, the lungs and the brain.

-In 2016, the National Health and Medical Research Centre spent $15,342,718.12 on asthma research, $46,449,325.66 on dementia research, $5,428,025 on men's health (excluding cancers) research and only $837,432.79 on endometriosis research.

-Endometriosis occurs in 1 in 10 women world wide and 550,000 women in Australia. It is one of the leading causes of infertility. It causes severe pain to millions of people and still hardly anybody knows about the disease. It is very often misdiagnosed which leads to the average7-10 year delay in diagnosis.

If you would like more information on my story please watch the video at https://www.youtube.com/watch?v=F0lLpVGRCdE .

Furthermore, if you are sufferering from endometriosis and/or any of the conditions it can cause, including mental health problems/sleep problems/chronic pain/invisible pain, and feel like you need a little bit more support from someone who understands, please feel free to message me on my instagram account fight_endo_like_a_girl)

This petition had 5,045 supporters

The Issue

I am 21, I am going through menopause, I suffer from chronic pelvic pain, I am in constant agony and have to self-cathedarize - which would have been avoided if my endometriosis was diagnosed earlier.The longer it takes to get a diagnosis, the more the endometriosis can grow and the more damage it can cause. In the 6 years it took for my diagnosis, I had my appendix removed, I had two other surgeries looking for infections in my intestines and I suffered from excruciating pain.  

The pain is crippling - it’s taken control. I’ve lost my job, my volunteering roles, can't attend university, it’s destroyed my relationships and my mental health, I have lost all confidence and worst of all - I have had the menopause forced on me at 21 years old.

I’ve been passed from pillar to post between over 60 doctors, 40 “specialists”, prescribed over 25 different types of medication and had 4 incredibly invasive surgeries. It took 6 years of unnecessary appointments, treatments and surgeries, and thousands of dollars, that could have been easily avoided.

Right now, despite 1 in 10 Aussie women suffering from endometriosis, the disease is given minimal Government funding for research and education programs amongst doctors and patients. This means GPs are left clueless and patients are continually misdiagnosed.

Common amongst young girls, doctors dismiss our pain as period cramps. We’re sent away from emergency departments for over-reacting. I was even told it was all in my head and referred to a psychologist.

Endometriosis has snatched away my future. I need the Health Minister, Greg Hunt and the CEO of the NHMRC Anne Kelso, to urgently step in and stop ignoring our desperate, helpless pleas.

Please sign and share widely to help shorten diagnosis times for endometriosis patients by allocating funding to improve patient outcomes and educating GPs on symptoms. Don’t let another 21 year old miss out on her future.

Some quick facts about endometriosis in Australia:

-Endometriosis occurs when a type of tissue, similar to the one that lines the uterus (endometrium) is also found outside the uterus. Endometriosis usually affects the reproductive organs, it is frequentlly found in the bowel, bladder and has been found in muscle, joints, the lungs and the brain.

-In 2016, the National Health and Medical Research Centre spent $15,342,718.12 on asthma research, $46,449,325.66 on dementia research, $5,428,025 on men's health (excluding cancers) research and only $837,432.79 on endometriosis research.

-Endometriosis occurs in 1 in 10 women world wide and 550,000 women in Australia. It is one of the leading causes of infertility. It causes severe pain to millions of people and still hardly anybody knows about the disease. It is very often misdiagnosed which leads to the average7-10 year delay in diagnosis.

If you would like more information on my story please watch the video at https://www.youtube.com/watch?v=F0lLpVGRCdE .

Furthermore, if you are sufferering from endometriosis and/or any of the conditions it can cause, including mental health problems/sleep problems/chronic pain/invisible pain, and feel like you need a little bit more support from someone who understands, please feel free to message me on my instagram account fight_endo_like_a_girl)

The Decision Makers

Greg Hunt
Minister for Health
Responded
Time for action on endometriosis The Turnbull Government will create the first National Action Plan for Endometriosis, providing much needed support for women who face this often misunderstood medical condition. The Plan will seek to improve the treatment, understanding and awareness of endometriosis, which affects around one in ten Australian women. It will be developed in collaboration with the Australian Coalition for Endometriosis, and members of the Parliamentary Friends for Endometriosis Awareness. The Plan will focus on how to improve the lives of women who face this terrible condition. Diagnosis of the condition currently takes on average around eight to nine years, placing a significant toll on individuals, families and the community. This condition should have been better acknowledged and acted upon long ago but today we are taking action so the struggle that women face will no longer be silent or their battles private. We will work with the medical community and key stakeholders to look into what gaps might be present in training, support and care. Importantly medical research will be critical to uncovering new options for diagnosis, treatment, care and understanding of endometriosis. We will therefore issue a targeted call for endometriosis research under the Medical Research Future Fund. The Turnbull Government will also provide funding of $160,000, through the National Health and Medical Research Council, for Professor Grant Montgomery to use genomics to investigate better treatments for women with endometriosis. The Jean Hailes Foundation, supported by Turnbull Government funding, will also make endometriosis a key feature of next year’s Women’s Health Week, to raise awareness of the condition. All participants of the Australian Coalition for Endometriosis should be congratulated for the advocacy and voice they give to the thousands of women who suffer from endometriosis. We look forward to developing this new national approach with all involved in the battle against endometriosis.
Malcolm Turnbull
Former Prime Minister of Australia
Bill Shorten
Shadow Minister for the NDIS and Government Services
Anne Kelso
Anne Kelso
CEO of National Health and Medical Research Centre
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Petition created on 20 June 2017