Image supplied by Dr Fleming 2019: Word-cloud 'what support groups mean to us' - collaboration with EPSS members
Earlier this year I had the great privilege of being invited to present at the Australasian Gynaecological Endoscopy and Surgery Society (AGES) Annual Scientific Meeting, held locally in Perth. Due to my experience with Endometriosis Perth Sisterhood of Support (EPSS), the topic I was to present on was “Patient Resources”. Due to my unusual combination of working in medicine, volunteering in support, and living with endometriosis myself, I have first-hand knowledge of the large range of resources available to patients. Grateful that this had been recognised, I quickly accepted the offer to participate in the conference and went back to my busy day to day life.
As the months went by and the conference drew closer, more information came trickling through. When I received a list of the people I would be presenting alongside, the gravity of what I had got myself into hit me! The list read like a “who’s who” of highly regarded health care professionals who treat endometriosis in Perth, from gynaecologists to pain specialists and pelvic floor physiotherapists. When I saw the chairs for the conference, I was even more intimidated, with two of the most popular gynaecologists among the members of my support group featured on the list. As a junior doctor these people will one day be my bosses, and hopefully then my colleagues; I knew I had to work hard to make a good impression!
Unfortunately, life and procrastination hit me hard. Before I knew it the first day of the conference had arrived and I only had two thirds of a presentation! As I walked in I was hit hard with “imposter syndrome”. Due to the demands of working full time, studying a masters, helping the wonderful women of EPSS, and parenting two children, I had made it to my third year working in medicine without attending a single conference. The idea of presenting at my first conference was intimidating! As soon as the presentations started that was all forgotten.
The international keynote speakers were remarkable. The “Ferrari” of laparoscopic surgery from Italy introduced me to the concept of nerve sparing pelvic surgery. This is vital when it comes to the excision of deep infiltrating endometriosis in order to preserve bladder, bowel, and sexual function. And as a few of my fellow endo warriors have unfortunately discovered, vital to prevent a worsening of chronic pain. The second speaker hailed from the United States, and over the three-day conference she delivered three separate presentations on the tricky relationship between endometriosis and pain. She discussed the difficulties of identifying and treating central sensitisation, a condition that often develops alongside endometriosis. Central sensitisation is essentially when your chronic pain makes your nervous system misbehave causing a long list of symptoms including pain in the absence of any cause, bladder and bowel issues, and fatigue. My favourite analogy that describes it is a little bit nerdy; your brain and nerves are the computer, you and your personality are the person sitting at the keyboard, and the way your nervous system talks to itself is the software. Central sensitisation is when something goes wrong with the software. This is what many doctors actually mean when they tell you your problems are “in your head”. Unfortunately, treating it is still something we are working on but finding a gynaecologist you trust is a good first step!
Most of the presentations I attended on day one were in some way related to endometriosis and pelvic pain, including a presentation by the wonderful Dr Susan Evans of the Pelvic Pain Foundation and the talented Dr Jason Abbott of Endometriosis Australia who was also president of AGES at the time! With a head full of new information, I headed home with a newfound motivation to perfect my own presentation.
Day two was D-Day. The first session of the day was focused specifically on endometriosis and had presentations not only on gynaecology, but also on naturopathy, physiotherapy, psychology, and radiology. As the afternoon approached, I was both excited and terrified. My session had a unique structure called “Pechakucha” which I think directly translates to torture, but actually meant that I had to have exactly 20 slides that automatically moved on after 20 seconds. I had a lot of information I had to convey very quickly, which was especially difficult as I was quite heavily pregnant and didn’t have full access to my lungs!
Unfortunately, I can’t tell you too much about my presentation. I’ve always been afraid of speaking in public and my brain has blocked a lot of it out. What I can remember clearly though is watching the audience digest the word cloud you see above. The words in this cloud were gathered from fellow EPSS members when asked “what does this support group give you that your doctors do can’t”. Some seemed a little shocked or offended, some seemed to understand. I hope what all of them took away is that support means so much to people living with a chronic illness, and a little understanding goes a long way. A few colleagues approached me afterwards saying I did well, but… refer to “imposter syndrome” above!
The final day was less focused on endometriosis, but I still loved every presentation nonetheless. Gynaecology is a fascinating topic and AGES brought together some brilliant minds to present this year. I think the take away message I could deliver to people living with endometriosis at the end of the conference is that your treating team probably understand your condition and empathise with you more than you expect, and this should only improve as time goes on. There is so much more to this condition than pesky cells growing where they shouldn’t. And there is a huge movement in the medical community to increase our knowledge through research and education, especially here in Australia. This disease is a tricky one, but we’ll beat it one day.
In the first week of August I attended another AGES conference, a Focus Meeting run in conjunction with The World Endometriosis Society called The Limits and Limitations of Surgery and Endometriosis. I headed off to Melbourne to attend with my third daughter in tow. Hopefully by the time she and her sisters are old enough to show signs of endometriosis, there will be more treatment options for them, if not a cure.
- Dr Katya Fleming