When I was 19, I was diagnosed with endometriosis. Severe endometriosis. The kind that ‘we usually see in women in their forties.’ But that’s not where my story begins.
When I was 12, I got my first period – and it was excruciatingly painful. Now, I always used to pride myself on being a pretty tough kid. I mean, I once broke my ankle and walked on it for a whole day before heading to the ER. Modern day warrior – I know. But this pain was different. It took my breath away the instant it started – and it was years before I could breathe easy again.
It was a whole year until I got my next period, and it returned with a vengeance. Naturally, after enough complaining, it became clear that something wasn’t quite right. My family did everything they could to try and find answers. Doctors checked my kidneys, my stomach, my blood, my ovaries, my muscles, my lungs, my bones – all to no avail.
For a few hazy years, it was largely believed that the pain I was feeling was likely just a symptom of severe anxiety, which, ironically, gave me severe anxiety – and depression to boot. Every time I felt the pain, I thought I was losing my mind again and tried my best to ‘just stay calm’ so it would go away. I stopped telling people when it hurt, for the fear of being labelled a hypochondriac.
I simply could not understand how everyone around me was managing to live their lives so much easier than I was. I couldn’t stand living in my own skin.
When I was 17, I lost my virginity. I was always told that it would hurt the first time, so I thought it was normal. By the third time, I started to wonder how anyone could enjoy sex through gritted teeth.
I pushed for answers. This was different now – I knew something was wrong. I knew such deep pain during sex wasn’t attributed to anxiety and I was determined to figure this out.
I went to my doctor who did nothing but joke about whether or not I was ‘doing it right.’ He was more concerned about my contraception than my pain. I went to another doctor who simply made the same disgraceful joke, and sent me on my way. Another asked if I’d considered that I may be bipolar.
I understand, I get it. Here’s this patient with a long history of depression, anxiety, supposed attention seeking behaviour and the same constant complaint written all through their history – but that’s the harsh reality of an undiagnosed endo patient, isn’t it?
When I was 19, I was diagnosed with endometriosis. Severe endometriosis. The kind that ‘we usually see in women in their forties.’ It was the most bitterly disappointing and wildly validating outcome. I’d put myself through absolute hell because I thought it was me with the problem – not a failing medical system. Not a lack of education and a complete disregard for a patient’s continual, relentless complaint.
After years of having to be my own advocate, if there was anything I wanted you to take away from my story, it would be this: Never disregard anyone’s pain, ever. Be it physically or mentally. Always validate other people’s concerns.
Lastly, to my beautiful endo sisters, never, ever give up. Allow yourself to rise above your circumstance. And when you are tired and vacant and feel like giving in, remember that you are far, far stronger than you let yourself believe.
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Thank you for sharing! I’m at the beginning of my road of dealing with my endo (diagnosed at age 30 march 2017, but dealing with the undiagnosed symptoms since puberty). Completed laparoscopic surgery, on 5 of 6 of Lupron injections (quite possibly worse for me than the endo itself), and hoping to try to start conceiving soon. There’s so little information that isn’t pushed by pharmaceutical companies or vague write ups that state what we all already know. I’ve been at a loss for what to expect from a real perspective, and I’ve had no clue what managing looks like long term until I found this website. So thank you for sharing and keep updating, as each of our stories are so different.