A snapshot of Naomi's life with Endometriosis

Updated: May 22, 2020

From the age of 13, I experienced horrendous haemorrhaging which seemed to last most days of the year. This was accompanied by severe anaemia, faintness, hot and cold flushes (from going into shock, from blood loss).

I was an active, lanky, agile kid, who had natural talent in gymnastics and swimming. However, I had to forego that as I could not use tampons and was reduced to bulky pads and an unpredictable cycle. The year was 1988. At the time, there was nothing offered to me, to alleviate my symptoms. I was not sent to a specialist and not diagnosed with anything, by the male GP.

I remember walking through Expo 88, feeling like I was about to pass out and wondering how long the toilet queue would take, as I was haemorrhaging, and having hot and cold flushes. As a child, I could no longer enjoy simple things like swimming, going to the beach, bike riding, or even going to EXPO 88!

I remember one day at school, having the worst haemorrhage of my life where it came out like a flood and just did not stop. It flooded all the way up to my stomach and all the way down to my knees. My teeth chattered, I went hot and cold and I could barely walk. I had a 45 minute train ride home and broke into tears after school, as I could bare it no longer.

At the time, I was not aware of any pads with wings and the only pads available to me did not have plastic in them, so they leaked. I would often wake up several times a night with a flooded bed. And mornings were simply a mess.

By the age of 29, I was not coping with the chronic anaemia. My iron level was sitting around 2. (Optimum iron levels for women should be 20 - 30). So, I insisted that my GP send me to a haematologist. He hospitalised me the next day and gave me an intravenous iron infusion, adding 1L of synthetic iron.

I have since had approximately 10 iron infusions, in hospital, to address the chronic anaemia, caused by the blood loss.

Times have changed in that pad technology has improved and I can buy maternity pads with wings, with dry cores and plastic lining.

However, unfortunately for me, I have not found any intervention to address my haemorrhaging. I have tried every OCP (pill) on the market, I have had surgery (D&C/ curette/ Mirena insertion/ surgical removal of endometriosis, etc). I get severe side effects from all hormonal interventions.

At the age of 36, I was FINALLY diagnosed with endometriosis, via laproscopy. I had strangulated ovaries. It looked like raffia string wrapped around them. I also had endometriosis in my utero-sacral ligament(s) and uterus. Unfortunately, the surgeon was a butcher and caused me more damage.

My symptoms continue and include pain (nerve pain, back pain), fluid retention and swelling, urinary incontinence and frequency (overactive bladder) and abdominal distention (making me appear pregnant). To name a few. The hormonal fluctuations play havoc with my mood as well.

I have worked out which pads are best for me, particularly the ones with a dry surface and the ones which don't bunch up. I have also found that incontinence panty liners are really good for spotting.

Apart from that, not a lot has changed for me.

I believe the reason for this is because endometriosis is a woman's issue and is not given adequate medical attention. I also feel there is a belief amongst society that it's "just a cross that women have to bear, on account of being female".

Most gynaecologists I've seen have taken a biased view towards endometriosis and only been interested in it from a fertility point of view, completely disregarding my pain, discomfort and inconvenience, all in favour of preserving my reproductive organs.

I am a single 39 year old woman and hope that, in the future, no girls have to suffer the way that I did as a teenager and the way that so many have.

- Naomi.


#2014 #chronicillness #emotions #endo #endoaust #endometriosis #endometriosisblog #health #invisibleillness #pain #pelvicpain #support #women #womenshealth

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