My Endometriosis Journey

Hi all

So my Endometriosis journey is probably the hardest thing to write about on here as it has caused a lot of pain in my life. It all started in 2013 at age 26 when I was lying on the couch in my parent’s living room and all of a sudden i felt this sudden pain where I felt like I was dying and that I couldn’t breathe. My dad was the only one at home and we were going to go to a Chinese New Year banquet at Vietnam restaurant but that obviously didn’t happen. I remember that my dad called my mum and my sister who were not there at the time. My sister is a doctor she would know what to do and she said I should go to hospital so my dad had to carry me down the stairs into the car and and drove me to the ED at Queen Elizabeth Hospital. I was then put on morphine as I was in so much pain. I then had some scans done and they said I had an ovarian cyst that had burst. It was the worst pain I had ever felt in my life. Since then I found out I had Stage 4 Endometriosis with reoccurring ovarian cysts and have had three laparoscopic surgeries to remove the Endometriosis. It seems to come back every two years and I am on the pill with a Mirena to stop the bleeding I get from my periods. Apparently, I would have it growing up but I don’t remember getting bad pain when I was in school. I was just getting heavy periods and I would go to the sick bay a lot because I would feel nausea. My sister would think I was faking it as I would get to go home but I think she was just annoyed that she would have to take me home.

If you don’t know what Endometriosis is according to Endometriosis Australia (2020) it occurs in 1 in 10 women and also in 176 million women worldwide so it is very common and I was surprised by how many of my girl friends had it when I was diagnosed with Endometriosis. Endometriosis is present when the tissue that is similar to the lining of the uterus (womb) occurs outside of this layer and causes pain/or infertility (Endometriosis Australia 2020). It is a debilitating illness and it sometimes it can be ignored by doctors or misdiagnosed because it can be considered as normal part of having a period. But if you experience pain that stops you from doing things on or around your period then that is not normal and you should go to your GP. I was lucky enough to get diagnosed straightaway due to my chocolate cyst.

Signs and symptoms as cited on Endometriosis Australia (2020) include:

  • Fatigue
  • 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.

I would get fatigue, nausea, joint pain, pelvic pain, pain during urinating and bowel movements, pain during or after sex but my pain was not as bad as some other people who cannot get out of bed. I am still able to do things but my pain is getting worse now and I think I have Fibromyalgia, which can be a comorbidity of Endometriosis. I am getting pain all the time now that I would take pain medication everyday. I have to have my fourth surgery at the end of the year as my Endo came back but it’s not as bad. The Endo has just moved my cervix and pushed up against my uterus so I am getting a hysteroscopy done to remove the Endometriosis and also botox injection to stop the spasms.

I would have Endometriosis for the rest of my life so this is my chronic condition, which sucks because it’s an invisible illness and it’s hard to say that I am unwell because no one can see it. I get low moods and currently on antidepressants to help with my depression and anxiety that I get from my pain. It makes me stronger though as a person and it makes me feel like I am warrior. Through Endometriosis I have discovered a community that understand what I am going through. I have been to high teas held by Endometriosis Australia, and there was a cabaret at this year’s Fringe called Endo Days that was like an Endo Support Group. It was so much fun. I have also held a sausage sizzle to raise funds for Endometriosis Australia.

I recommend checking out Endometriosis Australia, which has helped me a-lot with resources, education and support. Endometriosis Australia raises awareness about Endometriosis and also raises funds that goes towards research and education. I also recommend Pelvic Pain Australia and Jean Hailes for other resources.

Do any of you have Endometriosis? If so, how long did it take for you to be diagnosed? What signs and symptoms do you have? It would be nice to form an Endo community on here. So welcome Endo Sisters! I am going to update regularly about my Endometriosis so I will keep a diary. Thanks for listening!

Love Nat xx

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