Intro - This is all my rushed notes , things to do and check. Not Fact , contact the relevant person this is my nutshell the things I took away from listneing.
Diary Notes After the First UK PMDD Summit
The first UK PMDD Summit was one of the most validating things I’ve ever listened to. It was organised by the PMDD Project on Instagram, and if you don’t follow them, you should — their work feels like oxygen in a world where women’s hormonal health is still treated as background noise.
This is a diary entry rather than a finished blog post. I’ll add the full details once I’ve confirmed the names and studies.
The Canadian Specialist
One of the speakers was an older Canadian specialist whose name I still need to track down. She discussed HIGH OESTROGEN breast‑tenderness research from around 1980 — a study of roughly 66 women looking at cyclical breast pain, temperature changes, weight shifts, and hormonal patterns.
Her talk hit me hard because I’ve lived with mastalgia since I was 25. Nodules that come and go. Pain that shifts from soft to hard. Cancer checks. Years of being told it was “just hormonal”, “just a lump”, or simply “imagined”.
I wasn’t formally diagnosed with mastalgia until I was about 48.
Hearing her describe cyclical breast pain as a hormonal marker made me realise how much my neurodivergent body has been signalling distress all along — pressure‑pain sensitivity, sensory thresholds, and the way my brain processes hormonal shifts. None of it was ever connected by any doctor.
She connected it. She made sense of something I’d carried for decades.
I still need to find her name. She deserves recognition.
The Australian Specialist — Professor Jayashri Kulkarni
Another speaker — Professor Jayashri Kulkarni, an Australian expert in women’s mental health — talked about PMDD as trauma, the silent story, and the possibility of a genetic thread running through families.
One question she raised stayed with me: “genetic?”
She said the most I have ever heard I tried to store everything
Because maybe I do. Maybe my daughter’s PMDD and my own late‑onset symptoms in perimenopause and menopause are part of the same underlying pattern — possibly intergenerational progesterone hypersensitivity.
I’ve already emailed her. I haven’t contacted the Canadian specialist yet; she’s still on my list.
Professor JK blew me away with her prompt reply, help and information - forever gratful.
Why the Summit Mattered
The PMDD Collective and PMDD Project created something extraordinary — and they offered it for free. In a world full of “meno‑wash”, private clinics, and expensive promises, this summit felt like genuine care. Real science. Real women telling the truth.
Every speaker shared something genuinely life‑changing. I thanked them several times, and I meant it.
If you haven’t seen the summit, follow the PMDD Collective on Instagram. You can also sign up for their yearly letter — it’s worth it.
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