The Adeno Project

Coming back soon with more educational posts & results of the community survey from this year but memes for today!

Adenomyosis can’t make things simple 🙄

hi everyone! It’s been a bit since I unexpectedly took a break from posting on Instagram & this project but I’m back now. I was sick with COVID & trying to juggle healing from that, and some other things while (still) figuring out a way to balance all the things and make space for my own needs. Still a work in progress but I have missed working on advocacy and connecting with you all while on this break.

Wanted to start things back up on a positive note, so curious to hear what helps you cope with Adenomyosis and living with a chronic, invisible illness(es) day to day? We can likely help one another by sharing what we’ve learned which is the amazing part of this community

If you also have been diagnosed with Endometriosis, when was Adenomyosis brought up to you as a possibility? Was it after it was found or suspected due to imaging, presentation on exam or surgical finding? Was it due to uncontrolled symptoms? Was it after excision of Endometriosis?

Not only do the symptoms overlap with Endometriosis but they overlap with many other pelvic pain and gynecological conditions. Many patients have more than one of these conditions as well, adding to the challenge of treatment and diagnosis

It’s important to note the overlap in symptom presentation and that symptoms may be from both endometriosis AND adenomyosis. This needs to be acknowledged more so that patients are aware that Adenomyosis is a possibility regardless of age

The non-surgical options are similar as well: focusing on symptom management such as pain relief +/or bleeding with hormone therapies

Can you relate? 💜

Treatment options for Adenomyosis - this is a very simplified list but curious to hear from anyone who has found treatment to help with their symptoms. There are many of the box treatments as well that may be helpful

Sources: Aydin, G. A. & Yavuz, A. 2018; Benagiano & Habiba 2021

Things not to say: this

Bridge illumination/lighting of purple to recognize April as Adenomyosis Awareness Month in Boston, MA 4/30/22

Our voices matter, and we deserve to be represented. We deserve to have more information available regarding our disease, treatments and support available. We deserve hope and to be heard. April is just a small glimpse into the advocacy that happens year round, and will continue in hopes to bring further attention to this devastating disease that impacts so many silently. Not because the symptoms are silent, but because we are being ignored & forgotten. Your voice matters and is so valuable in what ever capacity you can advocate for. That includes simply sharing, liking, commenting and supporting us and others advocating for better care. I surely will not stop and have been a bit quiet during this month due to other circumstances, including working on long term plans for how I can take my advocacy to the next level. I would love to have others to collaborate with & build this collective effort with

Source: Tellum, T., Munro, M.G. 2022

Having a rough day (and week) over here so this is especially fitting

💜💜