Living in a World with Endo
By Jordyn
It all began when I was 16, during an appointment a back specialist following an MRI for a fractured back that had occurred eighteen months earlier. The good news—my fracture had healed! The specialist then suggested that “…I go and see a gynaecologist,” in order to understand the basis for the pain I had been experiencing.
Let’s fast forward a few months, to the moment I decided to book a private gynaecologist appointment, given the public waiting list was well over a year. My mum and I sat down in an unfamiliar room, where the Doctor asked all sorts of questions.
I got my period at age 12. In the beginning, it wasn’t overly bad. Although, this only lasted a few months, and sure enough, it started becoming heavier and very, VERY painful.
I had been to my GP a handful of times before the specialist appointment, and had been told “…it was a normal part of being a woman.” The GP then prescribed the pill. The pain continued to worsen, so I re-presented to my GP a couple more times, to be that “…everything was normal, this is just part and parcel of being a woman.” I was told to take paracetamol and ibuprofen for the pain, which didn’t help, but being young and naive I took him at his word.
This initial gynaecologist appointment was a bit of a bombshell. Following her examination, the specialist listed numerous concerns. First, she was concerned about issues with the shape and positioning of my uterus, next with the fact my ovarian reserve was so low, and then she was concerned I was entering menopause at age 16?! There was also the adenomyosis, with the bombshell being, “…it would be extremely unlikely that I would be able to conceive naturally,” as “…my and the baby’s health would be too great due to the issues with my uterus.” This prompted me to go on the public waiting list to see a gynaecologist who could offer me a laparoscopy. In the meantime, my periods started ruling my life. The clots, fluctuation in bowel habits, bloating, nausea, vomiting, migraines, fatigue, iron depletion, and the PAIN!
Fast forward a couple more years to when I finally secured an appointment with a gynaecologist.
The gynaecologist listened to all my symptoms and quite surprisingly didn’t dismiss them, which was a welcomed relief! He was certain that I had endometriosis, and that it was quite advanced. He wanted to send me to one of the best specialists in the country. It wasn’t until my mum happened to get a letter of review from our health insurance company that she realised I had basic cover under their policy—which included surgeries! So the roadies out of town to my specialist began (at this point I wasn’t aware of just how regular they would become). The specialist validated my symptoms and my history; it was so nice to eventually have Doctors who weren’t dismissing my pain. He booked me in fairly quickly for excision of endometriosis, and insertion of mirena.
D-Day arrived! It was the 11th February 2019; I was 19, and an absolute nervous wreck. I had never had surgery, so I didn’t know what to expect. I had assumed I would be back at Uni, exercising two weeks post-op, and that everything would be amazing. After all, this surgery was going to take all that horrid pain away!
I was in for a rude awakening…
My surgery went for a little over two hours, with two specialist consultants working on me. In the long-awaited, four week post-op follow up appointment, my specialist explained he found widespread severe deep infiltrating and superficial endometriosis, so I finally had a definitive explanation. The official diagnosis was a sigh of relief, I wasn’t going crazy, and it wasn’t all in my head.
Looking back I knew so little about the extent of this diagnosis. I was naively optimistic about my future, thinking this operation would more or less cure my pain. I didn’t really go down the rabbit hole of endless research as I was unknowingly in denial, almost resenting my body for what it was putting me through. It was easier to try and ignore it. The flare-ups become less severe and frequent, which I could manage for about a year. Bearing in mind I was still taking high doses of nortriptyline every day for chronic pelvic pain, so this was contributing to some of the relief.
The pain started creeping back in and it was worse than before…
I was in my first year working as a Registered Nurse, having to take quite a lot of time off work for the unbearable symptoms. I was relying on heat packs and high strength pain relief, which I knew wasn’t sustainable, but I was hoping it may pass. One night I had this overwhelming immense crippling pain like I had never experienced before. The pain made me so feel incredibly faint so my parents picked me up and drove me into the Emergency Department. My heart rate and blood pressure were elevated and as I was in obvious distress that they took me straight through, giving me IV morphine which offered some comfort. They discharged me the following morning with an endometriosis flare as the diagnosis. Although I knew this was different, it took me a week to recover from that night and the heat and my ‘go-to’ pain relief was barely helping.
I went to see the specialist again, and had a transvaginal ultrasound. This showed an excessive amount of fluid in my pelvis, indicating a burst ovarian cyst. He gave me pregabalin to take in combination with the nortriptyline; another neuropathic pain relief that he was confident would help manage these ruptures. He reassured me that my endometriosis wouldn’t have yet grown back as I was only 2 years post-op.
The same old symptoms were becoming ‘my normal’ once again – I was in agony!
I had the usual, persistent pain with my endometriosis flares, and my ovarian cyst was rupturing every few months. The fatigue and brain fog were so intense I was struggling to keep up with life; I just wanted to be able to do all the things that my friends could do. I kept battling, so determined to live a normal life. I started to become anxious at the thought of going out; I was fearful of the pain that would strike me like that again.
The fears were not ill-placed, as this is what it happened, repeatedly. I had four more episodes of excruciating pain caused by ruptured cysts. It was so unpredictable; once it struck I had limited time to try and tackle the overwhelming pain with pain relief before it put me into another ED cubicle. It was unbearable, I had enough. I visited the specialist a few more times before he offered a repeat laparoscopy. Although he said he was fairly certain that my endometriosis wouldn’t have grown back so soon, however, I knew something wasn’t right and a repeat laparoscopy was the best way to investigate.
It was 8th September 2021, and despite being nervous, I knew what to expect this time. The findings, well it was a moderately deep and superficial endometriosis with a considerably sized left ovarian cyst. The specialist replaced my Mirena during the operation, of which I’m not a fan. I still get headaches, migraines and fatigue, which I think the Mirena is exacerbating. However, my ovarian reserve remains low, so to be bleeding every month could be a risk, potentially jeopardising my fertility further.
I ‘m now almost three months post-op. The pain has definitely lessened, and I feel blessed to have a doctor who specialises in this condition. It’s been a long journey, with many ‘ups and downs’.
The specialist was surprised how quickly the endometriosis had returned, and recommended looking at my lifestyle as I needed to decrease stress and triggers. My body has been trying to tell me for a while now to slow down and stop committing to things that are difficult for me to do. Now, I am more or less being forced to do this. But I never thought this might mean sacrificing one of my biggest passions—working as a nurse. However my health must be my top priority, and so I must listen to my body.
Living with endometriosis is a daily struggle, but I’m grateful for so many things it has taught me. Endometriosis teaches you how to be so strong and resilient, which is defiantly something to be proud of!
Keep on keeping on Endo Warriors (and loved ones of Endo Warriors), you are doing your best each and every day and that is all we can do.
Lots of love,
Jordyn x
https://www.instagram.com/endo.health.hub/
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.
