Let’s Chat with Jordyn
by Jordyn Anderson | @endo.wellness.project
Living in a world with endo
It all began at age 16 in my appointment with my back specialist (oddly enough) following an MRI after fracturing my lower back 18 months prior. The good news - my back fracture had healed, he then suggested that I go and see a Gynaecologist as a “weird and wonderful” possibility for the pain that I had been experiencing. Fast forward a few months, I decided to book a private Gynaecologist appointment, as the public waiting list was well over a year. My Mum and I sat down in this 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. However, this only lasted a few months before it started becoming heavier and very, very painful. I had been to my GP a handful of times before this specialist appointment who said it was a normal part of being a woman and put me on the pill. The pain continued to get worse so I re-presented to my GP a couple more times, who reassured me everything was normal and just part and parcel of being a woman. They told me to take panadol and ibuprofen for the pain. Not once did he ever actually investigate this pain or mention going to see a Gynaecologist. Sadly, being young and naive I took his word and thought it was something I had to try and put up with.
This initial Gynaecologist appointment was a bit of a bombshell, following her examination she listed off numerous foreign concerns of hers…some being, issues with the shape and positioning of my uterus, the formation of my uterus, my ovarian reserve being so low, she was concerned I was entering menopause (at age 16?!), adenomyosis, and said it would be extremely unlikely that I would be able to conceive naturally and the concerns for my health and the babies health would be too great due to the issues with my uterus. At this point, I felt extremely lost and alone. My Mum had fertility issues so it was nice to have her support, although, I didn’t have anyone of a similar age to relate or chat to. I went on the public waiting list to see a gynaecologist who could offer me a laparoscopy. In the meantime, my periods really started ruling my life. The clots, fluctuation of bowel habits, bloating, nausea, vomiting, migraines, fatigue, iron depletion, and the PAIN!
Fast forward a couple of years and I finally had an appointment with a gynaecologist publicly who also 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 already quite advanced and wanted to send me out of town to one of the best specialists in the country who could deal with it. It wasn’t until my Mum happened to get a letter of review from their health insurance company that she realised I had basic cover under their policy - which included surgeries - Yay! So the roadies out of town to my specialist began (at this point I wasn’t aware of just how regular they would become). Again, he also 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 severe endometriosis and insertion of mirena.
D Day - 11th February 2019, age 19 and an absolute nervous wreck! I had never had surgery before so I didn’t know what to expect. Whatever I did expect was not at all reality. I thought I would be back to uni and exercise 2 weeks post-op and that everything would be amazing - 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 2 hours, with two specialist consultants working on me. In the long-awaited 4 week post-op follow up appointment, my specialist explained he found widespread, severe, deep infiltrating and superficial endometriosis and I finally had a definitive explanation. The official diagnosis was a bag of mixed emotions - grief yet relief that I wasn’t going crazy and it wasn’t all in my head.
Looking back now, I knew so little about the extent of this diagnosis. Quite naively, I was optimistic about my future and I thought that 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 and almost resented my body for what it was putting me through so it was easier to try and ignore it. The flare-ups became less severe and less 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 worse than before. By this stage, I was in my first year working as a Registered Nurse and was 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 was hoping it may pass. Then, one night I had this overwhelming immense crippling pain like I had never experienced before. My mum and dad picked me up and drove me into the Emergency Department. My heart rate and blood pressure were so elevated and I was in obvious distress that they took me straight through and gave me IV morphine which gave me some comfort. They discharged me the following morning with the thought cause to be endometriosis. Although I knew this was different, it took me a week to recover from that night and the heat and go to pain relief was hardly helping.
I went to see my specialist again who did a transvaginal ultrasound which showed an excessive amount of free-floating fluid in my pelvis which indicated a ruptured 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 but reassured me that my endo wouldn’t have yet grown back as I was only 2 years post-op.
The same old symptoms were becoming my normal once again. The usual persistent pain with the endo flares and with the ovarian cyst rupturing every 1-2 months. I was in agony. The fatigue and brain fog were so intense that 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 and was so determined to live a normal life. It got to the stage where I would have to cancel plans, avoid leaving the house, avoid taking on any responsibility such as driving or being left alone due to the crippling pain. I started to become anxious whenever having to leave the house that that pain would strike me like that again. And that is exactly what it started to do, repeatedly. I had five more episodes of this severe pain caused by ruptured cysts throughout the following 6 months. it was unpredictable and 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 and I had had enough. I revisited my specialist a few more times before he offered a repeat laparoscopy. Although he said he was fairly certain that my endo wouldn’t have grown back so soon, however, I knew something wasn’t right and a repeat laparoscopy was the best way to investigate.
2nd D Day 8th September 2021, just as nervous but at least I knew what to expect this time. The findings - moderate deep and superficial endometriosis with a considerably sized left ovarian cyst. He also replaced the mirena during this operation, which I am not a fan of! 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 for me and jeopardise my fertility further.
I am now almost 7 months post-op, my pain has definitely improved and I feel so blessed to have a Doctor who specialises in this condition. Although it has been a long road with multiple ups and downs as I still get quite frequent flare-ups with rupturing ovarian cysts monthly. My specialist was surprised how quickly the endo had grown back and recommended looking at my lifestyle to decrease stress and triggers for me. 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 so. I just never thought this could mean sacrificing one of my biggest passions (working as a nurse) which is a difficult pill to swallow. However, I must put my health as my top priority and listen to my body.
Something I would have loved to tell myself at the start of this whole journey - don’t do this alone. I remember hearing the word endometriosis for the first time, all of this information and fear can be extremely overwhelming. You are not alone. Approximately 1 in 10 suffer from endometriosis, there is an amazing community out there going through the same struggles who will welcome you with open arms. Surround yourself with people that love and care for you. You are your best advocate, this is not in your head, you are not overacting.
You are not a problem to be solved. Be kind to yourself and stay positive, as hard as I know that is some days. Love who you are, don’t hate yourself for what you aren’t. Endometriosis teaches you how to be so strong and resilient which is definitely 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
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