For the last five years I had no idea I’d been travelling with endometriosis at all. I didn’t know the pain I was experiencing each month wasn’t just abnormal, it was a health issue that I could do something about.
For those who don’t know what endometriosis is, it’s a disease in which the lining similar to that of the uterus grows in other areas of the body, usually the pelvic region, but there have been cases of endometriosis tissue growing in other areas of the body including the brain.
Each month, when a woman gets her period, those growths bleed and often that blood has nowhere to go, which can lead to the growth of cysts and adhesions, causing excruciating pain and even leading to organs to bind together.
I remember the very first time I experienced pain that was most likely associated with endometriosis. It was five years ago in Colombia. I was house sitting for a friend with two other friends in Bogota. We were going to work together that morning, but I couldn’t leave my room.
I’m lost for words when it comes to describing what the pain was like, only that I was vomiting and close to fainting as painful flare-ups came from my pelvic region. Doubled over myself, I made my way from the ensuite to the bed and back again for hours. My friends asked through the locked door if I’d be ok and I muffled a yes before they left.
I eventually visited a doctor in Colombia, I had tests done and then, when I visited Australia for a friend’s wedding, I had more tests done, and then more still.
“The results have come back all clear” the doctor told me. “You know, some women are just unlucky and get a lot of period pain.”
On the one hand I was relieved that this reoccurring pain wasn’t serious or life-threatening, on the other hand I wondered if that was really the end of it. Obviously, it wasn’t. I took prescribed painkillers, I scheduled my life around pain — deciding not to go out at certain times of the month — and I slowly adjusted my diet and my lifestyle. But over the last six month the pain has slowly become worse and worse.
Being a travel writer and having spent a lot of my time travelling in Colombia, Australia, most recently Iran and other countries around the world, I had to devise a plan to get through my trips away.
First came the anxiety. Thoughts would whirl through my head about whether or not I would get pain that month, how it would affect my plans, would I be able to keep up my commitments, would I be able to keep up with my plans?
Each month I hoped my pain wouldn’t land on a day that I needed to be at my best. If I had a trip away, I would stock up on painkillers, pack a hot water bottle and cross my fingers that I’d have the energy to leave my hotel room.
I tried to keep up my exercise routine. I’m a jogger and I love to go for a run in the afternoons, but there were too many occasions that I would go for a run and be scared that I wouldn’t be able to make it home because of the pain. More than once I considered hitchhiking back home because the pain was so bad. I’d have to stop and just wait for the pain to stop, shuffling my way back home when I could.
By this stage I knew something was wrong and I visited the doctor again, a different doctor. She ordered tests, the same tests I had done years before as well as a few new ones, and when nothing concrete was found she referred me to a specialist.
Within just five minutes of sitting down with the specialists, after explaining the same symptoms I had explained all the other doctors before her, she said: “It sounds like you could have endometriosis.”
The only way to accurately diagnose endometriosis is via a laparoscopy, or keyhole surgery, which I had the week before last. And they found adhesions, a cyst and several endometriosis growths throughout the area. The surgeon said it was likely they had been there for a very long time and that a former cyst had likely ruptured, which lead to the formation of the adhesions.
Just a few months ago I ran a fun run, a month before that I did my first triathlon, around the same time I went on two interstate trips for work, all the while dealing with this painful disease. Always pushing, pushing, pushing, because, as I had been told “nothing was wrong”. Well, something was wrong and now I know. Hooray!
Endometriosis affects an estimated one in 10 women, and it takes close to a decade for these women to receive a correct diagnosis. Once I found out that I needed surgery for a diagnosis, my partner and I began talking to other friends and coworkers. Just within my own circle, I found out about three women who had also had the disease and went through the surgery. My partner found out from three of his friends that their wive’s or partners had gone through the same thing.
What surprises me most is that I had no idea how prevalent endometriosis is and how common yet so unspoken of it is. It’s not an easy thing to talk about, that’s for sure, and it’s certainly not a topic for a dinner party or office banter, (because who wants to talk about periods?) but if you’ve ever experienced endometriosis, or know of someone who has, I’d love to hear about your own stories. What were your experiences and how do you make it easier to travel with endometriosis?