So I thought I was done with my series on endometriosis. But I was wrong! I decided to add this post tacked onto the end. If you want to read the whole series, I’ve linked them at the bottom of this post.
This entry is not specifically about my surgery, but it hopefully contains some helpful information regarding the ongoing management of endometriosis. Unfortunately, having the lesions removed, does not always lead to a permanent cure. So ongoing management is important to reduce symptoms, and hopefully avoid the need for more surgery in the future.
There currently is not nearly enough awareness and support available for people who suffer from these sorts of conditions. And many of us are simply unaware of the support that does exist.
One of those support groups is Qendo. Qendo is an organisation that provides information and support for people suffering from endometriosis and other chronic pelvic conditions. They have a 24 hour support line and a host of information on their website. It started off as the Endometriosis Association (Qld) Inc. and now supports women all over Australia and the rest of the world.
They run regular information nights, fundraising events and general meet-ups. I recently discovered Qendo when I went to one of their information nights discussing gut health and endometriosis.
Now, if you have been reading my blog a while, you know that I am a big believer that gut health and nutrition are incredibly important when it comes to healing. This was the focus of this information evening.
I do want to do a little happy dance here – I did a thing! at night! in winter! This is not something that I’ve been able to choose to do for years. The FibroTroll leered a bit, but my faithful tarnished Knight was my chauffeur, and I took it easy the following day and the toll wasn’t too high – hence the happy dance!
Dr Lara Briden was the speaker on this particular night, and she was interesting, entertaining and informative. I learned that endometriosis may actually be an autoimmune disease, which may explain why the severity of endometriosis lesions does not always correlate with the severity of symptoms.
She has written a book called “The Period Repair Manual”. It is a well set out, well written book that gives enough technical information for the nerds like me, but written in an easy to follow way. It’s full of things I wish I had known 20 years ago. I strongly recommend you read it if you have any period issues at all. If you wish to purchase a copy, it can be found in Qendo’s shop or you can access the first 2 chapters by signing up to Dr Briden’s newsletter here.
This book has a host of information regarding diet and supplements to help manage a huge range of period-related conditions. Many of the recommendations are things I am already doing, but I definitely learned a lot reading it.
***
To add to the already amazing work that Qendo already do, they are now in the process (in conjunction with Queensland Health) of developing a mobile app to help support people with endometriosis and other conditions.
I attended a workshop today to give input into that app. It’s still in the early stages of development but so far, it sounds amazing! It’s going to make tracking and managing symptoms so much easier. I believe it’s even going to be comprehensive enough with only small need for customisation for me to use it to manage the FibroTroll!
If this is something that interests or affects you, please take a few minutes out of your day and complete this survey –
https://www.surveymonkey.com/r/QENDOAPP
Anyone in the world can do the survey, so if you suffer from endometriosis or other pelvic pain conditions, please fill it in.
I am very excited about this app, and look forward to being involved in it’s development and testing. I will certainly be writing about it again in the future!
The first four parts of this series on endometriosis can be found here: Part One, Part Two, Part Three and Part Four.