Our Journey
Since 2011, we have been dedicated to bridging the gap between clinical research and personal experience, fostering a global community of support for women navigating adenomyosis.
2011-2015
The Adenomyosis Advice Association was founded by Danielle Russell in the United Kingdom following our Founder's adenomyosis journey. Establishing the Adenomyosis Advice Association and Adenomyosis Awareness Networks, supporting and signposting to vital resources for advocacy and education. Establishing a multi-platform worldwide network and support group for those with symptoms and a diagnosis of adenomyosis.
In 2015 our Founder published the Adenomyosis Screening Proposal, inviting clinicians worldwide to join the Adenomyosis Awareness Network in the hopes to help develop an Adenomyosis Screening & MRgFUS Treatment Programme
2016 -2018
Expansion of our digital support networks allowed us to reach many more thousands of Association members and women with adenomyosis symptoms, providing support, answers and signposting to clinical excellence worldwide. Our Founder joining the separate Westminster Heath, Employment and Business Forums strengthening the Adenomyosis Advice Association's ties with clinical researchers, healthcare providers and policy makers.
2021
The Association celebrated our 10th anniversary. We partnered with many other organisations supporting women's health for International Women's Day, Rare Disease Day and our Founder joined the Royal College of Obstetricians and Gynaecologists Women's Voices Involvement Panel in support of women with adenomyosis seeking better treatment and faster diagnosis
2022- 2026
Our Founder joining the UN Women UK Community to support worldwide health campaigns whilst also undergoing multi-discipinary team surgery and treatment for endometriosis, an ovarian endometrioma and bowel resection
The Growth Phase: 2016 – 2020
2011
2018
2019
2020
The Adenomyosis Awareness Month global campaign was officially launched, establishing April as a pivotal period for international advocacy and institutional recognition of uterine health.
We published the Adenomyosis Advice Association Global Adenomyosis Study via presentation and the Symptoms of Adenomyosis on YouTube.
The Association reached a landmark milestone of 40,000 active global members, solidifying our position as the primary free resource for adenomyosis support and information.
We took our campaign to Parliament and shared our support for further research as part of the Global Rare Disease Day highlighting the lack of research into Adenomyosis with Rare Disease UK
In 2023 the UK's National Health Service dedicated a page dedicated a page specifically for adenomyosis.
Our Founder achieving Professional Membership to
The European Fertility Society (EFS)
The Adenomyosis Advice Association's 14 year campaign April is Adenomyosis Awareness Month is recognisedfor the first time
by the UK's National Health Service
Adenomyosis Advice Association members shared their experiences in a clinical paper by Pye, L., Gillett, J. L., Clegg, H., & Tilley, M. (2026). “You Don’t Really Chat About Your Pelvic Pain over Brunch”—An Exploration of Silencing, Normalization and Identity Challenges in Chronic Pelvic Pain. Women’s Reproductive Health, 1–16
Adenomyosis Milestones
2022-2026
2025-2026
2023
2022
In 2022 the UK's Women's Health Strategy was published with a ten year plan including support and research into adenomyosis.
2024
In 2024 the Adenomyosis Advice Association Discussion Group welcomed and supported over 30,000 members and the Adenomyosis Awareness Network over 600 worldwide members. Networking women with adenomyosis and professionals supporting anyone that has adenomyosis sharing experiences and gynaecological related educational and networking opportunities.