"Don't Be Afraid to Advocate For Yourself": Olivia's Endometriosis Story

By Olivia Bellini

Olivia’s journey to diagnosis began at the tender age of eleven when she first began experiencing symptoms. At 18 she first started to actively to pursue a diagnosis, having had enough of her debilitating symptoms. By the time she was formally diagnosed at 34, Olivia had learnt to advocate for herself, do her research, and ask for what she needed for her body. In this blog, Olivia shares this journey to diagnosis and her message of support and encouragement to others who may find her story far too familiar. You can follow Olivia on Instagram at @sisterdoinitforherself

I’ve had period-problems my whole life.  

I got my first period just 6 weeks after I turned 11, and it was HEAVY.  Not just a little bit heavy, but “ bleed through a tampon, two pads and your school uniform twice a day” kind of heavy.  My doctor noticed my blood pressure would increase significantly around this time, diagnosed me with PMT and put me on the pill. 

At 18, I’d finally had enough and pretty much begged for a laparoscopy. I had constant back pain, would still get my period on the pill and could barely digest food.  My Mum also has endometriosis and was convinced I had inherited it from her.  At 21, I finally had an inconclusive laparoscopy.  Inconclusive. They couldn’t see inside of me, to determine if I had it or not (perhaps they had the lights turned out when they did it?) and I was placed back on the pill. I was also advised to have a baby now to fix the problem. What 21-year-old wants to be told to have a baby right now? Certainly not me! 

Endo Myth: having a baby will cure my endometriosis

Endo Fact: There is currently no cure for endometriosis, and pregnancy will not cure endo, nor result in an improvement in symptoms for everyone. If your doctor tells you that pregnancy is a solution to or treatment for your endometriosis, we urge you to seek a second opinion.

Deciding I could manage whatever was going on with my body myself, I stopped going to see any gynaecologists with a significant fear of them and knowing I’d potentially have trouble with my fertility.

After having a significant fall six years ago and fracturing my sacrum and two vertebrae, my body wasn’t coping with anything. I basically couldn’t leave the house for long, I spent a lot of time crying in doctors’ offices and couldn’t work out why some days I could walk short distances and the next, I’d be bed-ridden in extreme pain. I was diagnosed with ‘some kind of autoimmune disease’, which three or four rheumatologists still can’t agree on which one I have (insert massive eye roll here). I put on a lot of weight because I couldn’t move like I used to and with the constant pain my GP finally referred me to a spinal surgeon.

The first words out of the spinal surgeons mouth? “Are you sure this isn’t related to ‘lady parts’?”

Huh? But….. actually, you know what…. it probably was

I spoke to my GP and asked him if it was possible I had endometriosis and then informed him I’d be picking my own doctor. He was the fourth GP I had seen in two years, so excuse me for not having much faith in him at this point. While I was in Canada for six weeks for work, I dug deeeeeeep into doctor-ville not wanting a repeat of previous experiences. I spent the entire time looking for recommendations, reading up on local doctors and their specialisations and working out who I thought would be the best fit for me. I made the appointment to see him the day I arrived back in NZ. He was the president elect of the world endometriosis foundation and worked with a fertility clinic as well, so if nothing else – he was qualified. I should mention at this point I was 34.

Two weeks later, sitting in his office, I knew immediately I’d made the right choice. He is lovely, compassionate and relatable (still the best doctor I have ever had). He had me in surgery the following week (he knew about my previous experience and wanted to reduce my anxiety by making it as fast as possible). At the time of my surgery, I had almost every known gynaecological procedure – HSG, biopsies, D&C, hysteroscopy, colposcopy, adhesiolysis, insertion of an IUD and finally…. a diagnosis of Endometriosis (also adenomyosis and low ovarian reserve, but they all followed the initial diagnosis).

My advice? If you think you have endometriosis, be prepared to fight your battle. Do your research, find a good doctor and listen to your body. Be prepared to listen to the advice of your doctor but also – challenge them if you need to and ask a lot of questions. Don’t be afraid to advocate for yourself. 

Need some help with research? You can find our referral lists for Australia and New Zealand at qendo.org.au.memership/referral-list if your location isn’t yet available, you can request information and draft lists from our support coordinator in this membership space. Not a member? That’s okay! QENDO Membership is free

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