Two months ago, I was diagnosed with endometriosis on the spot by a new gynaecologist examining me for the first time.
No laparoscopy, no blood tests, just a good doctor who knew the symptoms and saw immediately that I had every single one, right down to the exact spots where I felt pain during my ultrasound.
I was shocked by the diagnosis, given that I had been through various gynaecological and medical interventions over the course of a decade of symptoms. In the last few years alone, I’ve had polyps removed, been to the A&E twice with excruciating period pains, had multiple smear tests and ultrasounds, even frozen my eggs. Surely someone would have noticed by now if I did have it? But no, like most women who experience an 8-12 year delay for an endometriosis diagnosis, I didn’t find out I had endo until I’d seen over 10 specialists in the field.
This is not to trash doctors at all. Two of my best friends are doctors and I see them work themselves into the ground every day to serve others. One GP in my hometown has been so dedicated to me over the years, that I don’t feel I would be the person I am today without her. However, the field of women’s health is vastly undertrained and under-researched, and it took 13 years for me personally to receive a diagnosis.
I first knew my body was different when I was a teenager. Looking back, the first sign should have been the extreme PMS that I would experience before my period. During those times, I was so down and angry that I genuinely make choices that impacted my life, career, relationships and future. I didn’t realise it was PMS. I thought for years that I was mentally ill and that I just so happened to have a personality transplant once a month around the same time. I had learned about periods in school, and I knew you could feel a bit sad around that time of the month, but I was never armed with the information that PMS could entirely alter my decision making and ultimately the direction I was going in in my life.
Despite having various physical symptoms (heavy periods, extreme period pains, tiredness, a bizarre intolerance of sugar, mood swings and chronically low iron to name a few) it took years of seeking mental health support for me to suspect that some of the issues I was experiencing may be physical and/ or hormonal. We didn’t know anything about the mind/body connection back then and for all intents and purposes I thought I was just sporadically depressed for no reason. It wasn’t until my cycle started changing in my mid 20s that I sought out any type of specialist help. I’d seen various GPs, only for it to be suspected that the symptoms I was experiencing were purely mental health related.
During one of my many visits to the GP, I was diagnosed with an under-active thyroid and began taking thyroxine daily. This helped alleviate some of my symptoms, namely the exhaustion and tiredness I felt constantly, and felt like a step forward in understanding what was wrong with me.
When I was 26, my normally regular cycle changed abruptly and I started experiencing mid-cycle bleeds. Hence my first ever visit to the gynaecologist outside of my regular PAP smears. Looking back, this honestly seems insane to me, that no one ever thought to have me checked out by a gynae at the very least, never mind an endocrinologist. That doctor found that I had polyps growing on my uterus, which were quickly removed (without pain killers may I add) and off I went.
Over time, the mid cycle bleeding continued and I found myself curious about what could be causing them. At the same time, I started using the app Natural Cycles as a contraceptive. Through tracking my cycle, I started to notice that the mood swings I’d been experiencing since I was a teenager would start at exactly the same time of the month, 10-7 days before my period. Something sparked in me, and I started seeking alternative paths to deepening my understanding of my body and potentially even getting better.
After various follow up visits to the gynaecologist, where I was told there was nothing wrong with me. I eventually found a (very expensive) private endocrinologist specialising in functional medicine. During my one session with her, she ran some in-depth blood tests, only to find out that I had the autoimmune disease Hashimoto’s Thyroiditis. Hashimoto’s is an illness that causes the thyroid, a gland important to hormonal function, to attack itself. What had first been diagnosed as an underactive thyroid, turned out to be something much deeper and more complex. We also found out that I had abnormally high Estrogen levels (which is highly linked to endometriosis) and low DHEA, a hormone that functions as a precursor for male and female sex hormones. This is usually linked to aging, so was very unusual for a woman in her 20s.
Things started to fall in to place. It felt like I was gradually building up an understanding of the intricate network of connections happening within my body, the conditions overlapping and triggering each other, each imbalance leading to another. By doctor’s orders, I stopped eating gluten (though later gave this up for a long time and have only lately revisited) and continued on with my life as normal, knowing there was no cure for Hashimoto’s.
Over the years I gradually forgot about my quest for knowledge, being rudely awakened back in to things following receiving the Pfizer Covid vaccination, when my periods became maniacally heavy and the pains so debilitating that I was hospitalised twice. I saw various doctors and specialists during this time, and a myriad of symptoms began popping up all over the place ending up with a biopsy for a lump on my breast (benign, thank God, and probably related to my Estrogen levels). But for some reason, no one considered endometriosis, until I finally reached one gynaecologist well referred to me by my mother in law.
This time, I came armed. Part of me feels that the reason my healthcare has been so difficult to trace and connect is due to seeing different doctors, in different countries, each with a limited understanding of the events and links of the past. I took my time walking the doctor through everything that had happened to me over the years, the depression, the mood swings, the pains, lumps, bumps and hospital visits. She took me in for an ultrasound and right away told me she was 99% certain that I had endometriosis, and that I should have received treatment years ago.
That takes me through to today. As of now, I’m only at part one of my journey with endometriosis. I’ve chosen not to go down the laparoscopy route for now, hoping to avoid surgery for as long as possible, if ever. I’ve began taking a progesterone tablet, whilst also seeking holistic treatment from a nutritional therapist who is helping me to understand the real ways in which modern life is contributing so badly to all of our hormonal and autoimmune issues.
I’ve started this blog as a way to document this journey as I learn about my hormones and how to balance them. It’s my mission to bust the myths around hormonal health and provide other women with simple, research-backed information so that they can feel empowered in advocating for themselves and seeking the treatment they need.
So come with me as I heal my body through a combination of nutrition, lifestyle changes and the modern medicine that I have often found myself questioning over the years…
Part two coming soon
