Endometriosis. This word, this silent disease, is not often talked about. Studies still can’t provide answers to the causality of endometriosis, but they can provide inevitabilities of the debilitating (and fatal) outcomes if it’s not treated it in time.
Most of the time women don’t know they have it. It’s a progressive disease with symptoms slowly growing worse to the point that it becomes quite distressing. Most women won’t notice that it’s actually a serious condition that has caused an increase in their menstrual cycle pain, and/or the amount of blood it produces.
I really want to tell you my story of how endometriosis grew exponentially to stage 4 without me even realising what was occurring within my body. This experience impacted my life so intensely that I want to bring awareness to the severity of the disease, and the reason why I have been absent for the months of September 2023 to January 2024.
Even though the pain, and blood, of my menstrual cycle was increasing slowly over the past few years, I knew something was immensely wrong when I was haemorrhaging way more than just a normal period should. Not to mention the excruciating pain that caused me to be bedridden for days with a hot water bottle on my lower back and another on my stomach, with pain killer medication that never seemed to provide any relief.
So, off to the hospital I went after losing 1-1.5 litres of blood, and for a few days I was on Tranexamic Acid (TXA) IV infusions to stop the bleeding until surgery.
By this time, I could not think of anything, or anyone, else. My body had entered into “fight or flight” mode and I knew that if this situation was not addressed, the consequences could be fatal. The doctors had discovered I had reached Stage 4 Endometriosis (it had reached my fallopian tubes, bladder, and pelvis), and to further complicate matters, the disease had developed into diaphragmatic endometriosis. (Out of all endometriosis cases, only 1% are diagnosed with diaphragmatic endometriosis. I was the first patient that my surgeons had ever come across with it.)
The only solution to this dilemma was a total hysterectomy. Yes, my whole uterus and cervix and both fallopian tubes were completely removed! Thanks to my amazing gynaecologist, Dr. Jodi Croft at Amélie Private, and cardiology team, the painstaking 6+ hours procedure of the removal of the endometriosis was a success! I was then on the road to recovery…an extended 6-8 weeks of a slow, anxious recovery because of the unexpected surgery on the diaphragm.
Post-surgery, I was hospitalised for a week to keep an eye on the wounds of the surgery, to make sure the stitching had held in place and that there were no further complications. A walking frame was needed to reduce using my core muscles as I walked. I was then sent home for 6-7 weeks to comfortably repair. For a gruelling 3 weeks, I could not move. We sometimes forget how much our core is involved with everyday activities, even walking seems trivial…until you have a total hysterectomy!
Now, I had no idea that I had endometriosis, let alone that it had reached stage 4. As well it escalating to diaphragmatic endometriosis. And it was only after going through this traumatic experience that I’ve learnt how little is known about this disease and how many women suffer in silence.
I put off seeking medical advice because I was afraid to let down my family, my friends, my work colleagues at the hospital, and my role as co-owner with Skin Revival. As women, we’re told sometimes to “suck it up”, “toughen up”, to “push through”, or “it’s normal” (FYI: it’s not normal), the pain of periods. It’s even more discouraging when we see, sometimes, women shaming other women when they’re having difficulty with their menstrual cycles. We need to give each other some compassion and support one another when it comes to period pain and excessive bleeding. It could be endometriosis disease.
With this mentality, there’s a lot of women, just like me, who push aside the symptoms. We tell ourselves “they’re not severe enough, I can get through today”, when really, those are the times our bodies are screaming the loudest to pay attention. I just really wanted to be there for my family, to be present in my three children’s lives when I dropped them off and picked them up from school and sports. I wanted to be the reliable midwife because we have a shortage of staff at the hospital. And I wanted to be available for my clients, to reach their skin goals, at Skin Revival. I knew that if I went down the rabbit hole of what could be causing all my problems, that I would not be there for anyone.
The realisation of the inevitable reality (that this disease could take my life) was the wakeup call I needed to make me fully grasp that if I didn’t get this treated, who would be here in the next year or two to fill my shoes? No one.
So…this is the reason why I have been unavailable these past few months. Having to call in sick to work to manage the pain and fluids had greatly affected my quality of life. But now, it’s been four months post-surgery, and I’m starting to get back into the rhythm of things! I’m slowly getting back into the gym, socialising with friends, back into midwifery, and treating my clients here at Skin Revival.
I strongly encourage all women to get tested for endometriosis. The earlier the diagnosis, the faster doctors can treat it and avoid the trauma and intense pains that come with the disease. There is no need to suffer in silence. There are healthcare providers that do care and will take your concerns seriously.
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March is the month of Endometriosis awarness. The yellow ribbon is the symbol for those who’ve suffered from endometriosis and to let them know they are not alone.
For more information on Endometriosis, follow these links:
- endometriosisaustralia.org
- marchintoyellow.org.au
- epworth.org.au/our-services/endometriosis-centre