BLOG | 05 MAY 2022
Endometriosis and the Endo Warrior – A Personal Blog
Endometriosis: A condition where tissue similar to the lining of the endometrium, which normally lines the uterus, is found in abnormal sites around the body (though most often found in the pelvis).
Common symptoms of Endometriosis include:
- Pain during or around ovulation
- Pain during or after sex
- Pain with bowel movements
- Pain when urinating
- Heavy or irregular bleeding
- Pain in your pelvic region, lower back, or legs
In Australia, Endometriosis affects 1 in 9 women and those who identify as gender diverse. For these individuals it can take on average 6.5 years to receive a diagnosis. I am 1 in 9 and it took me 6 years to get a diagnosis.
Everyone who has received a diagnosis or is currently awaiting a diagnosis has experienced their own unique journey. Nonetheless, a difficult journey. GP’s, Endocrinologists, Gynaecologists, Physiotherapists, Psychologists, Dieticians, contraceptive pills, contraceptive implants, intrauterine devices, pain killers, heat packs, ultrasounds, Laparoscopies, chronic pain, fertility issues … these all might sound familiar to an Endo Warrior.
For me, my journey to receiving a diagnosis began at age 18. My journey went a little something like this (to try to put it as briefly as possible):
- GP visit – My GP referred me to an Endocrinologist
- Endocrinologist – They started me on the contraceptive pill (let’s just call it contraceptive pill no. 1)
- GP visit – The contraceptive pill was not helping with pain and bleeding and so the dose of contraceptive pill no. 1 was increased by my GP.
- Nausea and vomiting occurred with the increased dose of contraceptive pill no. 1 so back to the GP I went. They changed me to contraceptive pill no. 2.
- Contraceptive pill no. 2 was not helping with pain and bleeding so my GP advised that I skip the sugar pill. This worked for a while, until it didn’t.
- I went back to my GP who recommended the Implanon (aka. contraceptive implant or the rod).
- The Implanon was inserted a few weeks later. This was followed by constant bleeding and pain for 3 months. During this time, I was prescribed Panadeine for pain relief and Tranexamic Acid to control unwanted bleeding.
- With no improvement after 3 months, I was back at my GP, the Implanon was removed, and I was put back on contraceptive pill no. 1.
- Referral to a Psychologist – I was feeling over it all, I was experiencing anxiety, and my confidence with regards to my body had decreased. I was given a referral to a Psychologist who supported me in my journey.
- Referral to a Gynaecologist (no. 1) – They suggested surgery in the form of a Laparoscopy to determine if I had Endometriosis. I was in the final year of my university degree and having time off for surgery just did not seem possible at this point. I also had no idea what Endometriosis was. I also had no idea that surgery was the only way to diagnose Endometriosis.
- I went back to my GP, explained the situation and they provided me with another referral to a different Gynaecologist (no. 2).
- Gynaecologist no. 2 recommended having an ultrasound first to rule out other possibilities such as polycystic ovarian syndrome which can be diagnosed without needing surgery.
- I had the ultrasound and later my Gynaecologist ran through my ultrasound results, which showed that some of my organs had stuck together (basically confirming Endometriosis was present).
- Laparoscopy – I went into hospital for my Laparoscopy 5 months later where Endometriosis was diagnosed and removed.
Now I wish I could say my journey ended here with the Laparoscopy and diagnosis but the thing about Endometriosis is that there is no cure. My journey continues with trialling different methods of treatment including medicines, Physiotherapy, and soon naturopathy.
For a long time, across generations Endometriosis has gone undiagnosed. For a lot of people, they still have no idea it exists. There is still so much to learn about Endometriosis in not only the medical world, but also in the social world and education and employment sectors. On average Endometriosis costs an Endo Warrior $30,000 per year (Endometriosis Australia). Not only can Endometriosis cost an Endo Warrior money, but it can also cost them their quality of life.
Support and understanding are needed! If you know an Endo Warrior, know that their journey has not been easy. If you think (even just slightly) something is wrong with your body, don’t be afraid to ask for help.
Do I wish I had pushed harder from the beginning to get diagnosed? Yes.
However, with being so young, not even knowing what Endometriosis was, and not having the confidence within myself, how could I have pushed harder?
I hope that with more awareness and further research, more Endo Warriors find their voice and find confidence and strength in their journey.
Help and support are available in all forms and what I have found incredibly helpful in my journey was Physiotherapy (a Physiotherapist who specialises in women’s health), Psychology, and finding a Gynaecologist who took the time to explain everything clearly. The right support is everything!
The following websites provide further information about Endometriosis, for if you are curious, need further support, or think this could be you:
By kalean jones