Share your endometriosis experience

Creating impactful change for the endometriosis community

Being both an endometriosis sufferer and having worked with chronic pain patients as an Allied health professions our founder is driven by the current lack of knowledge within both society and medicine, resulting in not only a delayed diagnosis and/or misdiagnoses of endometriosis, but the negative impact on the well-being and the quality of life of endometriosis sufferers due to, a lack of medical research, limited clinical knowledge, and societal bias regarding; invisible illnesses, women’s health & wellbeing, and menstrual health.

About Endometriosis

What is Endometriosis

Endometriosis is a medical condition in which tissue similar to the lining of the uterus (endometrium) is found elsewhere in the body. These cells can grow on the surface or infiltrate deep inside organs, nerves, muscles, ligaments etc. Endometriosis has been found on every single organ in the body (including the brain, heart, lungs etc), and can bind organs together. Endometriosis has been listed as one of the top 10 most painful medical conditions. Despite this there is no cure for endometriosis, only management strategies and surgery to reduce / limit the effects of endometriosis.

Effects & Complications of Endometriosis

Loss of organs
Stoma
Urostomy
Chronic pain
Fatigue
Medical trauma
Nerve damage
Nausea / sickness
Shortness of breath
Chest pain / tightness
Infertility
Ovarian cysts (which can {& do} explode)
Bloating (Endo belly)
Burning up
Frozen pelvis
Fused organs

Misdiagnosis
Medical anxiety
UTIs
Depression / low mood
Blood in stools
Heavy bleeding
Painful sex
Bleeding during / after sex
Painful ovulation & mensuration
Pain opening bowels
Migraines
Black outs
Sciatica / nerve pain
Acute flare up of pain
Adhesions
Pneumothorax

Misconceptions of Endometriosis

Endometriosis has many misconceptions both within the medical profession and society which not only delays vital treatment, but can result in outdated and / or inappropriate medical treatment and advice, further prolonging the suffering of those with endometriosis. The main misconceptions are:

Endometriosis is just a painful period that can cause infertility.
Endometriosis only affects menstruating women.
The pill, coil, or pregnancy will reduce / slow down / reverse /stop the growth of endometriosis.
A Hysterectomy or menopause will cure endometriosis.
Endometriosis is only found in the womb & ovaries (reproductive organs).
It is too rare for endometriosis to be found outside of the pelvic cavity.
Endometriosis only effects women in their 30s who have not had children.

It is vital that these misconceptions are abolished, and that everyone has a factual baseline knowledge of endometriosis.

Project 514 415: The Lived Experiences of Endometriosis

Poetry Book

Art Gallery

Lets stop the silence together!

Our collaborative art and literature project, has given a voice to the 1-in-10 people living with endometriosis, in which 170+ people shared their lived experiences with endometriosis through art and literature pieces with the aim of:

Raising awareness for both symptoms & the lived experiences of endometriosis.
Debunk misconceptions.
Highlighting the urgent need for updated medical research and upskilling of medical professionals.
Reducing the ‘average’ diagnosis period down from 8 years (for many this can be 20-30 years until diagnosis).
Create a safe space for people with endometriosis to be heard, seen, and validated.
Creating impactful changes for the next generation.
Increase knowledge and provide education to change societal bias regarding, invisible illnesses, women’s health & wellbeing, and menstrual health.
Increase empathy for the endometriosis community and have an awareness on the impact of sufferers’ families, careers, friendships, physical and mental well-being, futures etc.