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Living with endo

Category: Delayed Diagnosis, Impact on Quality of Life, Public Health, and Teen Symptoms.

Kia ora koutou,

My experience is an undiagnosed but highly probable case of endometriosis. Upon the time of my first period, at the age of 13, I endured cyclic belts of pain that were unlike anything I had ever experienced. Over a day was spent in bed in agonising pain and due to my then standpoint of avoiding pain relief medication, the ongoing pain led to vomiting. There was speculation by others that I simply had a low pain threshold and the agony was an exaggeration. I felt ridiculous, especially in moments when the ‘contractions’ subsided for a very short moment and I went from being in immense pain to feeling normal… before the next belt kicked in.

Eventually I began taking medication but common drugs like paracetamol and ibuprofen failed to work effectively enough for me to be able to continue the day. All this while I still had no idea what was happening internally. I was lucky to only be experiencing only about 24h hours of intense pain, that being the first day I started menstruating. However, in the lead up to my period (which varies from a few days to two weeks), I couldn’t cope with any exercise more intense than walking on the flat. I would stress constantly about being caught out at times where I wouldn’t be able to rest it off which, of course, occurred regularly. Some experiences of this included being at school and having to mask the hurt and carry on which led to vomiting in the bathrooms and requiring someone to drive me home or being caught on walks where I physically could not continue and felt great guilt and shame for being under outward stress and pain. A family friend (who I didn’t know had endometriosis until later) passed on a recommendation for naproxen (an anti-inflammatory) which was the first and only medication that actually helped.

Local doctors had little to say about what was happening but were happy to prescribe naproxen and leave it as it was. In my later years of high school, we had an external individual come to speak to us about endometriosis and it was enlightening to hear of something that seemed to align with what I was experiencing. Following this, I found out that both my aunties have been diagnosed with endo and it started to become clear that this is the likely cause of the pain I endured each time my period arose.

I am now 22 and it’s all occurring to this day and any resolutions are still uncertain. Naproxen is becoming less effective and I am becoming more frustrated at being caught out with pain on long cycles etc. weeks in advance to actually getting my period. From the knowledge of those I have spoken to with endometriosis, the surgery is not particularly successful and with the little research there is into endometriosis, it’s difficult to know how to approach the future. From reading of others experiences it seems like the road only gets more complex upon diagnosis and seeking support.

Kia kaha to those enduring endometriosis, whether diagnosed or supposed. It’s frustrating and exhausting, I know that as someone who probably experiences the best of cases. It is essential that our awareness of endometriosis increases in Aotearoa; to ensure that our wāhine are supported and that their experiences are not dismissed, and that there is prompt and accessible support in the treatment process.

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