“I Became Obsessed With Finding an Answer”: One Person’s Journey to an Endo Diagnosis

In a recent appointment with my therapist, we spoke in great detail about how easy it is to slip into old ways of thinking. The point to this was to show me that the more I spoke about negative experiences from my past, the more my brain would keep thinking they were happening in my present, in other words, what we think we can actually become. She referenced a quote by an old wise philosopher that goes something like this… “A man is what he thinks about all day long.” So simple, but it blew my mind. I haven’t been able to stop thinking about it since. (How ironic.)

We got onto this topic because I had been speaking to her in great detail about my history with health issues and all the things that had happened over the last 10 years, at times stopping me from doing things I wanted to do. I kept trying to tearily insist that there was simply no way I could move forward in my life until my pain and symptoms were completely eradicated. The thing is, this is what I was literally choosing to believe. I was so frustrated by this idea. I had so much power and I was abusing it!

Although knowing all of this brings me a lot of hope, it also makes me sad at times. Sad because it’s not like I chose to consciously sit and think about my symptoms and feel sorry for myself all day every day. Sad because I was given no choice but to think about how I was going to find a solution when doctors couldn’t.

Over the last 10 or so years, I’ve become consumed with health issues I started having when I was about 18 years old. In my late teens, I developed pain in my pelvic area (including debilitating period pain) and intolerable digestive symptoms that were diagnosed as many different things in the years following. Doctors couldn’t figure out what was going on so naturally, I ended up trying to figure it all out on my own; it was an exhausting process and consumed my thoughts a lot of the time — even when I was out there having fun doing all the things you do as a twenty-something-year-old.

When I wasn’t actively thinking about it, I was thinking about it.

Waking up in the morning worrying if symptoms might strike — thinking about it. Going to another doctor in the hope I might get somewhere that day — thinking about it. Getting on Google to see if there was any sort of intervention I could find to help cure my mysterious gut symptoms — again, thinking about it.

The entire time I knew something wasn’t right and I became obsessed with finding an answer. I’m sure that anyone in their right mind would want to find the reason why they were in pain all the time and that it wasn’t just me? This is the problem with a chronic pain condition. Often, because it isn’t solved just by simply going to the doctor and getting a magic pill, it can end up becoming a quest for survival… a desire to want nothing more than to figure out why you’re feeling the way you are when everyone else around you doesn’t seem to be.

Seven years into the search I was diagnosed with a condition called endometriosis. It had a name! That was a relief. But what I started reading about what I was dealing with left my empathetic soul feeling crushed. Hundreds of other people sharing stories of how they too had to live through years of bodily discomfort and pain before being diagnosed with endometriosis. I couldn’t help but wonder, why on earth was it taking so long?

I spoke to naturopathic doctor and author Lara Briden and she agreed that it can be a long and uncertain road to a diagnosis because, until recently, the gold standard for diagnosing endometriosis was laparoscopic surgery. Many doctors have been reluctant to subject teens and young people to surgery (rightly so), however, lack of education in the area also means that by the time a person is diagnosed, she has most likely experienced a great deal of trauma.

Doctors give the pill and hope that it will provide relief but often it doesn’t, leaving it up to the person again to try and figure it out. A diagnosis is one thing, the way it’s managed is another.

In lockdown last year, I joined an endometriosis support group online. I wanted to meet other people around the world and talk to them and hear their stories. It’s been a really healing process for me — mainly because I was stepping outside of my bubble of thoughts to meet other amazing people with different perspectives and lives to mine.

Sairah’s story particularly touched my heart. Sairah is Pakistani and lives in Dubai. At age 12, Sairah’s periods were so heavy that she had to wear double sanitary towels to school otherwise she would be at home as the experience was too unbearable to be in public. At age 20, periods became extremely painful for her and for about three cycles, her flow was less heavy. A gynaecologist ordered an ultrasound and found “chocolate cysts,” and Sairah was then asked to go on the pill.

A few months later she visited another renowned gynaecologist who prescribed her Danazol — a strong medication with severe side effects. The doctor then suggested surgery, where she had a complete laparotomy and 6+cm cysts removed. Prior to surgery, Sairah was experiencing severe stomach pain, basically living off Panadol. In 2010, she had another laparoscopy removing more lesions. Between the two surgeries, Sairah was on Zoladex injections which apparently controlled lesion growth for a few months at the most.

There were hundreds of stories of varying degrees like this within the group.

In my communication with Sairah, she struck me as a kind-hearted young woman with so many desires and so much to offer the world. However, she was holding herself back just as I was — in fear of not being in control of her health.

Lara predicts that we’re on the cusp of a big change with Endo, which is a glimmer of hope. Both diagnostically with the coming to market of non-invasive testing methods such as blood or saliva tests and in terms of treatments, research is honing in on the fact that Endo is a disease of immune dysfunction, not hormone imbalance.

Increased awareness and education can only be a good thing for decreasing the diagnosis time for people. I hope for nothing more than people to be understood and not have to suffer so long before finding relief and therefore, having to think and worry less about the state of their bodies.

I spent a lot of years thinking about how I wasn’t feeling great because of endometriosis. Now, I keep reading the quote my therapist gave me, reminding myself of the fact that we have more power than we think. That just because we have pain or any kind of condition or issue, it doesn’t need to become us. My therapist taught me that we can alter our pain response just by shifting our focus. It might take years to get somewhere but I can’t help but wonder what might happen if I start to shift it.