Being a non medical professional at a medical conference is an interesting and informative experience.

You could walk in to WCPAG (World Congress for Pediatric and Adolescent Gynaecology) and feel like an outsider, because in part you are to the majority, yet it doesn’t feel at all like that.  The space was welcoming and formal yet felt relaxed.

Attending this conference as a patient advocate was a humbling and special experience.  A chance to learn more but also share, ask, and make connections.

I had the pleasure to be joined by two peers (Rima, Sumaavi and Ashley, MRKH Canada) who I finally got to meet in person after so many years and share the stage with them hosting a workshop focused on the tree of life as a narrative therapy approach to support those with DSDs with MRKH as a specific example.  Additionally having Adair from Beautiful You MRKH in the room and being able to meet other west coast MRKHers during our time in San Francisco was very special – shout out to Elise and co for their west coast meet up.

To say doing this was out of our collective comfort zone was an understatement but we were very much encouraged and inspired by our own experiences, our peers, and the value of approaching a diagnosis without thinking about the diagnosis itself.  To have medical specialists in the room from Cincinnati,  a surgeon from Argentina, representation from the Swedish uterus transplant team and Dutch specialists was quite overwhelming.

Our experience in the MRKH community is that medical professionals don’t know about MRKH yet here was a conference where suddenly MRKH was frequently mentioned, understood and explained and often in the main plenary hall.  It felt refreshing to be in a space amongst gynaecologists, surgeons, clinical psychologists,  nurses and more and be able to speak about MRKH in a way so rarely seen in our day to day experience.

To be able to contribute to discussions and share lived experiences in a way that is accepted and welcomed made it feel even more important that we could be there.

In one workshop we were even asked if the accompanying material was the right tone for patients and was there anything else we would suggest.  It felt validating and important that we were there and to be able to have the chance to share the stage with such esteemed professionals in this way was something I didn’t expect to have the chance to do.

What struck me though is that despite the positivity from the event we know the reality for so many is different and that these specialists are too few and far between.  That these multi disciplinary teams are incredibly vital but too limited.

But the passion is there.  The drive to share knowledge and encourage collaboration is there but we all know the reality of the process is more challenging.  Challenging medical systems and national policies often making it harder to encourage collaboration even sometimes within the same country.

How do we make this better?

We need to talk more. We need to find ways to make systems and departments talk to each other and importantly we need to share knowledge better.

I was encouraged and motivated by the discussions I had, that we as patient advocates had with specialists from across the world.  However, I’d like to have seen more patient perspectives presented on the plenary stage, there was a surprising focus on surgery and dilation and comments that included a male gynaecologist saying the “only purpose of vaginal lengthening is for sex” (face palm moment) which only reinforced for me why that too clinical approach doesn’t speak to the patient needs in the right way and focuses on “fixing” rather than care. This mentality was challenged by other medical professionals there (amazing) but shows its still there.

Big kudos to those presenters who talked about peer support as part of their presentations, it was rarely mentioned but we all know how important this is to so many, both complementary to professional support and in some cases all that is available to patients struggling with their diagnosis.

This was an incredibly inspiring event showing there are great things happening in the field of PAG (Pediatric and Adolescent Gynaecology), that there are truly fascinating advancements and collaborations happening but equally it felt there was still work to do.

I’m motivated to keep these new connections going, to learn more, to foster collaboration and ultimately be part of the process, with my peers to improve care.

Bring on Manila 2029

Charlie – Director, MRKH Connect

Ps. I’ll also be honest I saw more pictures of surgical procedures than I will ever need to see again and I didn’t expect to get a dilator (Soul Source) in my delegate bag!