The harsh reality of living with Endometriosis

Warning this article contains confronting images.

This is what living with endometriosis looks like. This is the harsh reality even after a hysterectomy, even after the active disease is gone. This is the devastating damage it leaves behind as it breaks your insides into a million tiny pieces, leaving holes and scars that can’t be seen. This is what it does to you, years down the line.

ICU post surgery
ICU post surgery

Riddled with adhesion’s from previous surgeries it might as well be like having active disease. Multiple laparotomies and the abdominal wall is so damaged and frail it’s caused multiple hernias and an abdominal wall with countless holes in it that mesh now protects and holds my abdomen in and my insides from bursting out. Open surgery with a scar from the pubic bone to the sternum, drains coming out, catheters stitched in to the abdomen releasing local anesthetic, round the clock pain relief, a night in ICU, 3 more days on the ward and 8 weeks off of work so far and counting.

Wound drain
Wound drain

I’m soon to be 43 years old, I’ve had complete hysterectomy, removing the uterus and cervix 3 years ago after already losing ovaries many years before that. My first surgery was 22 years ago for a ruptured endometrial ovarian cyst, my bowel had wrapped around my appendix and what I was to later know, would be the start of my endometriosis journey. Over 30 endometriosis surgeries later and despite this last surgery showing no active disease the endo still wins. Despite no active disease this time round, the decades of damage have been done.

 Catheters  releasing local anesthetic
Catheters releasing local anesthetic

It is not just the disease the creates endless symptoms and issues, it is all the additional problems it causes, bladder issues, problems with the bowel, nerve pain, hormonal issues, adhesions, fatigue and the list goes on. For me and so many others, endo opened the door to all these additional issues and co-morbid conditions, it opened the door enough that chronic pain walked right through and made my body it’s home.

Drip and pain pump
Drip and pain pump

So what Is Chronic Pain?

According to Pain Australia, ‘If your pain has lasted beyond the time expected for healing following surgery, trauma or other condition—usually three months—then it may be considered a chronic illness.’ https://www.painaustralia.org.au/about-pain/what-is-chronic-pain

What is Chronic disease?

‘A disease that persists for a long time. A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics.’ https://www.medicinenet.com/script/main/art.asp?articlekey=33490

What is Endometriosis?

As defined on the Endometriosis Australia website https://www.endometriosisaustralia.org/about-endo endometriosis is:

Endometriosis is present when the tissue that is similar to the lining of the uterus (womb) occurs outside this layer and causes pain and/or infertility. The lining layer is called the endometrium and this is the layer of tissue that is shed each month with menstruation (period) or where a pregnancy settles and grows.

This layer consists of two sublayers:

  1. A base layer that is always present, this is where the new tissue regenerates following a period;
  2. A surface layer that is shed with each period.A base layer that is always present, this is where the new tissue regenerates following a period.

With 176 million women suffering from this disease worldwide, that’s 1 in 10 women, and an average delay in diagnosis of 7 to 10 years, this disease has a huge impact on both individuals and those around them and the economy.

A study was conducted across ten countries on the cost and impact of endometriosis, some key findings were:

  • Quality of life was impacted by symptoms, the main culprit being pain. It impacted on productivity levels at work as well as non-work related activities including, housework, exercise relationships, child caring, shopping and study.
  • The average cost of endometriosis per woman per year:
    $12,094.25 AUS
    Lost work productivity $7950.28 AUS
    Direct health care costs $3929.70 AUS
    The cost of endometriosis reaches further than the personal costs for a woman with endometriosis. It has a wider impact on the community. Lost productivity is twice the cost than the direct health care costs to a woman with endometriosis. This study doesn’t include the cost to a countries health system.

This information was published on the Endometriosis Australia website from the Endometriosis Research Foundation Global Study of Women’s Health Consortium. https://www.endometriosisaustralia.org/research

What are the symptoms?

  • 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 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

It is important to know that this disease doesn’t just affect women my age or older but teenagers too, and the earlier the intervention the better the long term outlook is and more effective treatments can be. If you or someone you care about have these symptoms and is yet to be diagnosed then it’s important to advocate for your health and see a doctor who can get you access to the right treatments. Familiarise yourself with information on the condition, head to https://www.endometriosisaustralia.org/ and check out their resources including downloadable fact sheets you can take to your doctor. Take the first step and ask to see a gynaecologist who specialises in Endometriosis, learn what you can about the disease and don’t be afraid to be your own advocate.

Living with a chronic condition can be isolating and lonely, talk to family and friends or link up with support groups in your area on online if you feel more comfortable. We are here too, so feel free to contact us via email or direct messages on our social media accounts if you want advice or a friendly ear.

Most importantly stay positive, focus on your well being and self-care, your chronic illness may be part of you but it does not define you.

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