The Importance in Finding Your Purpose and Community
Hi, I’m Tayla, a 21 year old living in Cairns and now a QENDO volunteer! I currently work full time in an admin/retail role which I absolutely adore and I devote my time to. However, I do plan on going back to University after some time to pursue a Science-focused career, though what that career will be is yet to be decided.
In my spare time you can find me reading, walking the local rainforest trails, gardening and occasionally going out for a bit of a boogie.
Now to the fun stuff…
I was diagnosed with stage 1 endometriosis back in February 2021 after my first laparoscopic/ D&C (Dilation and curettage) surgery. My diagnostic story is like many others; I had been seeking out help for my heavy, painful and uncontrollable periods for approximately 6 years. In that time I had been on a total of 5 different forms of hormonal birth control and a few other non-hormonal medications as well to try and make that time of the month manageable. While some medications would work for a short time or suppress some of the symptoms, I had to stop using them at one point or another. It was as if my body stopped responding to them!
It affected quite literally every aspect of my life – my school life, my uni life, my work life – I always felt like I was fighting a losing battle.
Incredibly long, painful periods plagued my teenage years and continued into adulthood. With this, there was fatigue, huge clots, extreme bloating, constant iron deficiencies, vomiting, nausea, dizziness, diarrhoea and bowel urgency. None of my friends could relate!
I would very easily and frequently bleed through a combined pad and tampon within 1-3 hours, which in turn caused a hell of a lot of anxiety whenever I had to leave the house (especially once I started a job which required me to wear light coloured pants as part of the uniform). I remember missing an exam once at 16 to a painful but not out-of-the-ordinary period and my mum carting me off to the doctor - only to find I had a ruptured ovarian cyst on my right ovary. This resulted in being sent home, told to take a little extra Panadol and Nurofen...
Although many similar and worse pains followed, I always felt silly going back for help so didn’t a lot of the time. After all, wasn’t this just another pain that I would be told to take extra Panadol for?
Before my official Endo diagnosis this year, that cyst was the closest I’d felt I’d come in getting any sort of medical validation for my pain. I had countless blood tests, examinations, and ultrasounds - all which came back “clear” for endometriosis – but we all know now that it doesn’t always show up on these.
It certainly didn’t help that heavy, long, painful periods run in the family, so a lot of my symptoms I tried to come to terms with and accept as normal. I’ve learnt now later from having very open conversations with the older women in my family that my symptoms were more intense than the majority of the other women in my family, but not entirely unheard of. Times were certainly different when my mother’s and grandmother’s generations were younger when it came to knowledge and medical help, so who knows, maybe it does run in my family - however I’m currently the only one who’s been officially diagnosed with the disease.
Since my diagnosis of endometriosis, I’ve also been diagnosed with IBS (Irritable Bowel Syndrome) and a form of nerve pain called ACNES (not the pimples although I’ve got plenty of those, but Anterior Cutaneous Nerve Entrapment Syndrome) so the cause of my pelvic pain is a little more complex than originally thought. Even though the path after my endo diagnosis has been a bit rocky at times, the diagnosis itself provided me with a huge amount of comfort, relief, and validation.
Finally I felt like I could breathe - I wasn’t going crazy and my symptoms weren’t all in my head!
It’s obviously still a long road ahead, but it definitely felt like the hugest weight off my shoulders after what felt like fighting with my body for so long. Plus now I receive more specific treatments now that my healthcare team and I know what we’re trying to treat.
It’s taken me some time to get around the fact that I’ll likely be dealing with chronic pain for a large part of my life, but in my case I’m thankful that my current health care plan seems to be doing the job and keeping my symptoms at a minimum apart from the occasional symptom flare here and there - hoping to start pelvic physiotherapy soon too! It also took me some time to get around the fact that I had Stage 1 endometriosis - at times I used to think all of this pain and all of this BLOOD for so few spots, really? But endometriosis is a complex disease, and severity of symptoms doesn’t always correlate with the extent of the physical presence of lesions - one of the many, MANY unknowns which scientists and doctors are still trying to figure out!
QENDO was suggested to me by my gynaecologist when it came to seeking further information and connecting with others. I met Grace (the current Cairns QENDO event facilitator) and Taylor (now one of my closest friends) at my first meet back in March and it was the most amazing thing to be able to talk openly and candidly with those who were experiencing the same/similar thing. I’ve definitely made some friends for life for which I’m forever grateful.
I’d love to help raise awareness and assist in education particularly with other young people from all different walks of life.
If I had known even half of what I know now about endometriosis and had more bravery to speak up for myself at 15, maybe I could have gotten help earlier, but teenagers are rarely, if ever, educated on what’s considered outside the norm when it comes to menstruation (I’m hoping things may have changed a bit in the few years since I’ve left school).
Diagnosis for diseases such as endometriosis, PCOS, and adenomyosis can take years even when beginning to seek help young - not to mention the stigma around these diseases. I’ve noticed especially living in regional Queensland for majority of my life, that people are expected to keep quiet about struggles related to menstruation, and being young and chronically ill is a VERY taboo topic. This can obviously make it very difficult to reach out to others on the same journey - and sometimes all you need is someone else who just GETS it.
One of the biggest things which I was told by doctors before diagnosis when looking for help is that “…It’ll be better after you have kids” or “…Periods are always bad when you’re young and they’ll get better when you get older” (this started at 15 years old).
So we’re meant to just suffer throughout our secondary and tertiary education years waiting until we magically get better, falling behind our peers in the meantime?
What about when we enter the job market and want to work and physically can’t?
What about when we are so exhausted or in pain or bleeding so much we can’t manage any sort of social or dating/sex life?
Are we meant to just sit here and struggle in silence or apparently get pregnant very, very early - which can be incredibly difficult/ impossible sometimes with a disease that affects your fertility?
Like what sort of options are those?
It’s an honour to be part of an organisation that has done phenomenal work over the years to support individuals and provide educational resources to the public - very excited to see what the future brings!
This Blog has been written for QENDO and shared with consent.
This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.
The materials available on or through the website qendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition. To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.
