New brain endometriosis research raises questions I have been asking for years
A case report published on 11 September 2026 describes presumed cerebral endometriosis in a 48-year-old woman.
She experienced seizures linked to her menstrual cycle, and imaging identified a lesion in her right hippocampus. Following progestin treatment, her neurological symptoms resolved and follow-up MRI showed marked regression or disappearance of the lesion.
The diagnosis was presumed rather than confirmed through a tissue biopsy. This single-patient report adds to the limited published evidence about this rare form of endometriosis.
For me, it brings longstanding unanswered questions back into focus.
My neurological symptoms began in 2003, when I survived a brain clot. I have lived with brain symptoms, including headaches, since then.
In 2021, after learning that cerebral endometriosis exists, I underwent a further brain scan. As explained to me, it showed one cyst in the same area where the previous clot had been identified. When I raised cerebral endometriosis as a possible explanation, my neurologist was not willing to investigate that possibility further.
I have continued to have annual scans. My understanding of the findings, including my October 2025 brain scan in Romania, is that there are now three cysts in my left frontal lobe.
I do not have a confirmed diagnosis of cerebral endometriosis, and my cysts are in a different part of the brain from the lesion described in this paper. What I need is specialist review of my imaging and history to establish what these findings mean and whether they relate to my symptoms or endometriosis.
Finding a medic with the relevant knowledge has been incredibly difficult.
At my recent private endocrinology consultation, the doctor acknowledged that he had no experience in endometriosis and told me he had Googled the condition the evening before my appointment. I appreciated his honesty, the time he gave me and his willingness to arrange further investigations. But it highlights the gap patients with complex disease face when trying to find informed, coordinated care.
I have now written to the Minister for Health asking her to comment on progress in establishing multidisciplinary teams in Ireland for extra-pelvic endometriosis. I have asked what provision is being made for complex cases like mine, where assessment requires expertise across several specialties, and how patients can access those teams.
After decades of illness and years of brain investigations, I am still seeking answers.
New research should help open informed conversations and guide appropriate investigation. Patients should be able to raise a question about a rare condition and receive a considered explanation, an assessment or a referral to someone with the necessary expertise.
This is part of why I continue to call for a national inquiry into endometriosis care. We need to understand the barriers to specialist assessment, how patients’ concerns are addressed and who takes responsibility when their needs fall across several medical specialties.
Read the research paper https://www.mdpi.com/2077-0383/15/18/7062
Thank you for continuing to support this petition and the call for better care and accountability.