Apparently adenomyosis is a common gynaecological condition. In my experience however, after experiencing debilitating migraines, being sent for blood, abdominal, bladder and bowel tests, and seeing various specialists (even having a brain scan) since the age of 16, not one medically qualified person mentioned the existence of the condition to me.
I wanted to make others aware that you do not have to suffer alone with this particular condition. At the lowest points of my illness I felt frightened, distressed and I wanted my life back. Ultimately having to decide to have a hysterectomy in my 30's was a BIG, but very necessary decision for me.
In 2020 we brought adenomyosis to the attention of Parliament here in the United Kingdom during Rare Disease Day. The campaign also had excellent support from the media organisation ITV during April is Adenomyosis Awareness Month We look forward to more proactive work being done nationally and internationally by clinicians worldwide to help more women get the diagnosis and support that they need.
In 2022 the UK's Women's Health Strategy was published with a ten year plan including support and research into adenomyosis.
In 2023 the UK's National Health Service dedicated a page dedicated a page specifically for adenomyosis.