Katie's Endometriosis Journey
By Katie Dawson
Having endometriosis can be a scary, lonely and isolating disease when trying to tackle it on your own. It can feel as if no one understands how you are feeling or the pain you are going through and the unnerving symptoms you feel deep within. That's how I felt for a really long time, and still do at times if I'm being completely honest.
I think the first time that I ever heard of Endometriosis was through a friend of a friend who had been diagnosed with it. During her periods, she would be curled up, unable to move or function, with severe cramping, heavy bleeding and vomiting- which would often result in being admitted to hospital. I remember thinking to myself, "Thank goodness I don't have that - I only have the pain, but not the heavy bleeding or the vomiting so luckily I don't have endo!" (Ahhh, hindsight!)
As I reflect on my complicated health history, I can attribute some fairly significant symptoms and struggles to Endometriosis. I got my first period quite young, around the age of 11- I think I was in grade 6. I have foggy memories of going to the school sick room, and calling my mum to come and pick me up due to pain, dizziness, and blood noses at the time. I remember it being a scary time; I felt very alone and didn't want to draw attention to myself in class. I was particularly anxious about fainting in front of people because of my pain or blood loss. From my early teenage years onwards, I was riddled with many confusing and debilitating symptoms - period pain, severe fatigue, vitamin and mineral deficiencies, muscle aches and lots of stomach issues - nausea, reflux, indigestion, bloating, food intolerances etc.
My symptoms continued on into my early twenties- I was now married and experiencing a significant amount of wide-spread body pain. Lots of other unusual parasympathetic nervous system symptoms started to occur too (heart palpitations, tingling/burning feet, ringing in the ears, intolerance of cold - e.g. getting into a pool) I saw a myriad of different doctors over that decade (all who seemed perplexed and couldn't offer any answers), had test after test, was given many diagnoses (Ross River Virus, Richettsia, Chronic Fatigue Syndrome, Generalised Anxiety Disorder, and Fibromyalgia).
My husband and I had been married for 4 years when we decided to try and start a family. I don't know what it was, call it intuition perhaps, but I had this sinking feeling from an early age that conception might not happen easily for me. Although I desperately didn’t want to be right, as it turns out, I was. Two and a half years later (with no pregnancies to speak of) we started to investigate possible reasons for our infertility. It was an overwhelming, confronting and at times scary new world we were entering into.
I remember the first time that a doctor referred to me as "infertile". That word sunk into me like a tonne of bricks - it was so full of doom and my hope evaporated.
I was 26 at the time and suddenly my dream of having a family of our own felt like it was slipping out of reach. I went in for a (confronting) internal ultrasound and I distinctly remember it to this day. The Sonographer was concentrating very hard as she hovered over my ovaries with her wand (she had a terrible poker-face I might add). Being a keen observer of body language, I watched intently and saw her lips barely moving while she counted the cysts. She swallowed hard...you know, the kind when people take a big gulp as if having to swallow a big piece of bad information? And so I asked, "It's bad, isn't it? How many cysts are there?" She told me that she had counted at least 20 cysts on my right ovary, and a further 22+ cysts on my left. The pit in my stomach grew deeper.
When I went back to the obstetrician with my latest findings, she confirmed a diagnosis of Polycystic Ovarian Syndrome (PCOS). Upon researching more natural options, I came across an acupuncturist and Traditional Chinese Medicine practitioner who I began to see in the hope of treating the cysts on my ovaries. She was the first person who told me that periods aren't supposed to be painful - which flabbergasted me. I couldn't imagine having a period WITHOUT pain, yet that was actually the norm?!
My acupuncturist was the first practitioner who flagged endometriosis to me as a possible cause for my symptoms, but I wasn't yet ready to accept it because I knew that it would mean having to have surgery to get a diagnosis- and I was petrified about the idea of surgery, as well as finally finding out what they might actually discover in there. Around the same time, I was researching other fertility treatments online and I found a supportive doctor who practises NAPROTECHNOLOGY, which is a fertility treatment that uses bio-identical hormone therapy and cycle-tracking methods. She was such a breath of fresh air- hopeful, kind and gentle in her approach with me, which is what I needed after such a tumultuous decade of doctors and specialists who put me in the too-hard basket, leaving me to doubt my own instincts. She did another sequence of blood tests to work out exactly what was happening in my cycle with my hormones, and after a few months of tracking, she gently suggested that I might want to consider having a laparoscopy to see if there was any endometriosis contributing to the infertility, based on the pain and symptoms I was still experiencing.
By this point, I was feeling desperate (both for pregnancy but also for pain relief) so I found myself willing to go down this path. She organised for me to have surgery with one of the best Endometriosis excision specialists in Adelaide, and she stipulated on the referral that if any Endometriosis was found, that it was to be removed via excision (not ablation), but with the preference of preserving all organs for fertility (an important note to include if you are wishing to conceive in the future).
My official diagnosis of Endometriosis was finally given to me at the ripe old age of 27 after laparoscopic surgery (approximately 16 years after initial symptoms started). The surgery was extensive and my surgeon discovered between stage 3 & 4 Endometriosis. I had deep infiltrating lesions and also flimsy adhesions adhered my bowel to my abdominal wall - FINALLY, I had some answers to my pain and crippling symptoms. The surgeons discovered deep endometrial nodules in my Pouch of Douglas as I'd suspected from my pain, and on the right side of my abdomen where I had a lot of issues, my bowel was adhered to my abdominal wall with adhesions, resulting in a surgical bowel resection. There were other superficial endometrial implants found too. All endometrial lesions that were discovered were extensively excised through 4 laparoscopic entry points.
Everything that I had read pre-surgery said that laparoscopic surgery was "minimally invasive", usually home that day or after one night in hospital, and that you should be able to return to work within a few days, to a week. This proved to be the some of the worst information out there, as many endo-sisters will I'm sure agree. My recovery was incredibly painful, debilitating and long. Immediately after surgery, I had lots of swelling and extensive bruising, severe abdominal pain, and fainting episodes. My recovery took several months before I felt properly healed (e.g. no twinges of internal pain or bruising) and I was able to get back to work, driving, lifting and regular activities. (Find out more about laparoscopy and what to expect, including how recovery differs from patient to patient here).
During this ordeal, I found it very difficult to open up about our infertility battle, even to close friends (who only found out many years later) because I had a deep sense of failure and shame from not being able to do what a majority of women can do- fall pregnant and become a mother. At the time, I didn't have anyone in my life who could personally relate to the same struggles I had experienced from being chronically ill from such a young age, going through infertility, and the daily symptoms associated with endometriosis- the loneliness and isolation was SO difficult at times.
Much to our surprise and disbelief, 4 months after my surgery I fell pregnant (no intervention required, however I was still taking the bio-identical progesterone to support my cycle). It was as if after the lesions & adhesions had been removed, my body gave me the all clear - "Yes, now it is finally safe in there for you to grow a baby!"
My pregnancy was healthy, but riddled with a lot of anxiety as I lacked a lot of confidence in my body's abilities as a result of the years of medical trauma, let alone knowing whether or not it was cut out for the job of nurturing and growing a healthy baby. Incredibly, our sweet little Ivy was born safely on the 24th of February, 2016.
I realise I have delved into a lot of my medical history, not just my Endo history, but I felt it was important to highlight that Endometriosis has in hindsight, been wreaking havoc on many areas within my body, since a very young age. The body operates as a whole machine - if something isn't operating as it should be in one area, it has knock-on effects in other parts of the body. The early period pain, digestive issues, anxiety, body pains & cramping, severe fatigue, vitamin/mineral deficiencies, and the hormonal imbalances - they weren't all in my head as I was told so many times. I believe they were all linked to my Endometriosis diagnosis. For me personally, it causes such widespread inflammation within my entire body, and in my case it certainly isn't just cyclical pain. I have varying degrees of pain all day-every day, in different areas within my body. My worst flare ups occur during ovulation, menstruation, stress, lack of sleep, and when I have overdone my physical limit.
Endometriosis has set me on a path that I never expected- My life is not how I dreamed or imagined it would be at the age of 33.
I sometimes think about all of the things I could have achieved if I didn't have pain or the chronic exhaustion that comes with having Endometriosis and Fibromyalgia. I have had to learn to practise patience and develop courage, to rest but also not to procrastinate (much) during "good days". I've had to learn about self-compassion, and also be proud of the fact that I am a strong person from having gone through all of this. I feel that my future will continue to be a mixed bag of wanting to do things versus weighing up what I actually CAN do, and pacing myself.
I would never wish endometriosis on anyone, however I do believe that a higher self can only be found as a result of going through extreme hardship and challenges. Having been through this turbulent experience, I am so passionate about empowering other women (and young girls) to regain a sense of power over their health & fertility (not just about conceiving a baby but also looking after their hormones during their "fertile" years and beyond) and also their management of endometriosis symptoms. This is one of the main reasons I first started my instagram account@endo_complikated, followed by the creation of my Endo-Complikated website.
My instagram account started out as a way of connecting with other Endo Sisters and spreading awareness about all aspects of this disease, in the hope that others out there feel less alone in their struggles. I hope that the website can also be a valuable and informative resource for anyone in need of support, with accurate information about endometriosis from someone who has first-hand knowledge from living with this awful disease. Despite the epidemic proportion of women who suffer from endometriosis (at least 1 in 10), there is still so much inaccurate, misleading information circulating out there on the internet (and even through doctors) about the disease. I have spent many many months, extensively researching about endometriosis and learning from some of the most respected, leading experts in the field of wide excision laparoscopic surgery.
My hope is that through my website and blog I can provide up-to-date, factual information alongside relevant and honest, personal insight. I want the content to be richly informative, accurate, and transparent, so that anyone out there in the world can learn more about the insidious disease that is Endometriosis. I hope that anyone who is currently struggling with endo can be reassured that they are not weird - they are not "imagining" their symptoms - And they most certainly are NOT alone in their health battle.
Endo-Complikated (with a 'K' to represent my name) began in April 2019, and the name encompasses how Endometriosis (as well as PCOS + Fibromyalgia) have complicated my life in ways I never could have imagined. Here's to making sense of this complex life and making the most of it despite any health challenges.
Katie Dawson x
For anyone in need of some support and encouragement, please feel free to check out my instagram and website for more information - I'd love to hear from you!
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