WEEKLY SPOTLIGHT: PMDD & Me

1. Tell us about your background story, how did you get to where you are today?

My name is Alice and I’m a reproductive health specialist midwife who also suffered from a menstrual health disorder known as Premenstrual Dysphoric Disorder (PMDD). PMDD is a debilitating condition affecting up to 10% of women and people assigned female at birth during their reproductive years. PMDD is a cyclic hormone-based mood disorder where you have a severe, abnormal physical and psychological reaction to the normal hormonal changes during the menstrual cycle.

For me, my symptoms started at the onset of puberty and gradually became worse over time leaving me suicidal at least once a month by my mid-20s. After 20 years of suffering, I changed GP and was quickly diagnosed with PMDD. The diagnosis was both a blessing and heartbreak. I finally knew that there was something wrong, that it wasn’t all in my head. The relief at having a label to put on my symptoms was huge, but as PMDD has no known cure, I was facing a long road ahead.

My PMDD symptoms were so severe that I was classed as disabled and my partner became my carer. The irony was that as a midwife I would work with women becoming mothers every day, when in my own life my own reproductive system was threatening to kill me.

I was known as treatment resistant as my body fought all the known therapies available. Eventually I faced an agonising decision. I had to choose between my uterus or my life. I knew that PMDD would eventually kill me, and so four years ago I took the devastating step and had a total hysterectomy with bilateral-oophorectomy. This major surgery is a last resort option for treating PMDD as it removes the female reproductive organs entirely, putting an instant end to the menstrual cycle.

Plunging into surgical menopause overnight, and grieving for my loss of being able to ever give birth to a child of my own, my mental health took a long time to recover. I was diagnosed with Post traumatic Stress Disorder and Depression and worked hard at self-care with my truly gifted psychologist.

Two years later I had turned a corner and was living my life to the full. I had gone back to university to study for a Master’s in Education Practice and had started a new career in healthcare education. I still needed to work on my mental wellbeing every day, but I was repairing the life-long damage my PMDD had caused.

I knew that I had to give back to the community who had been there to support me and my wife in our darkest hours. I also knew that even as a healthcare professional, I had struggled in understanding my condition and the treatment options available. So together we co-founded a not-for-profit organisation to support others who were going through the same difficulties.

PMDD & Me started out as a little idea that has blossomed into our proudest achievement. In 2019 we were able to register as a Community Interest Company or CIC, became accredited as a nationally recognised Training Provider and gave the first PMDD focused TEDtalk (TED approval publication pending).

Our first venture as a not-for-profit organisation was to run the UK’s first PMDD conference specifically targeting those affected by the disorder and we have gone from strength to strength reaching sufferers across six continents.


2. What is your overall mission with your business? What do you hope to achieve?

Our hopes and plans are growing by the day. As a reproductive health specialist midwife, I recognise that to achieve this you must start with education as the foundation to self-empowerment and self-advocacy. PMDD & Me CIC’s driving mission is to provide and facilitate the highest-quality of educational opportunities to those affected by reproductive health disorders to enable self-advocacy and self-empowerment. We believe in the universal human right to health and health care that is accessible, responsive, timely, safe, of high-quality and patient-centred.


3. Who is your main audience?

Our main audience is anyone who is affected by female reproductive health. This includes all girls, women and people assigned female birth. However, we don’t stop there. We know that social support networks are critical in the care needs of those experience reproductive ill-health. Therefore, we also include family members and partners in our educational sessions. We are also very pleased to say that we are gathering increasing interest from professionals who realise that reproductive health is a pivotal element of holistic care, and so we also welcome delegates on our programmes from professional backgrounds including; GPs, Gynaecologists, Nutritionists, Psychologists, Holistic Specialists, Teachers, Social Care Workers, Nurse practitioners and Medical Students.


4. Tell us a great story of success about people interacting with your brand.

The PMDD & Me Conference 2019 was an idea I had on a bus home from work, whilst having a particularly difficult menopausal symptom day. I realised that if I was struggling to get the information I needed to manage my condition effectively, then there must be thousands of sufferers without a medical background feeling even more lost!

Within two days of reaching out to the wider PMDD community I had a full programme of speakers all donating their time, including one of the worldwide leading experts in the field; Professor John Studd, and a partnership with the leading charity; The International Association for Premenstrual Disorders (IAPMD), and sponsorship from See Her Thrive, Vicious Cycle, and Time of The Month.

We sold out months before the event and so decided to live stream the conference, and were overwhelmed with the response! We reached people in over 20 countries and six continents! The conference was picked up by BBC Breakfast TV and BBC Radio across the country and we were inundated with messages of support.

The day of the conference was the best experience of my life. The energy felt was incredible, with people meeting others with the same condition for the first time in their lives. So many friendships and social network connections were made that day. I have stayed in touch with many attendees who have since gone on to achieve their own formal diagnosis armed with the education they received that day.

We also raised a significant donation for the IAPMD Peer Support Programme which provides tailored support service for anyone suffering from reproductive health disorders. This is an inspiration service that has literally saved lives, and it was an honour to support them.


5. Can you tell us about some of your future plans for the business?

As has been the case for many businesses this year, we have had to make changes to the way we deliver our education programmes.

We are currently running a virtual tour called PMDD & Me Meets The Professionals. This is a series of accessible webinars with a special guest who delivers an evidence-based presentation on their professional area of reproductive health, followed by a question and answer session. We have been joined by Asarina Pharma, Dr. Hannah Short, Dr. Mandy Leonhardt, Dr. Nina Fuller-Shavel, and menopause expert Diane Danzebrink so far, with many more planned.

Looking to the future we are hoping to take PMDD & Me on Tour and run intimate face-to-face workshops across the UK, when it is safe to do so. This will bring people together once again in a location close to their home and will focus on a particular area of PMDD symptom management.

We are also developing a reproductive health training programme for secondary schools, which will include teacher training sessions, as well as workshops for students of all genders and ages, to empower advocacy and normalise menstrual health from a young age.

6. What would your top 3 tips be for women who use your business?

Our top tips for people who use our business would be:

· Take every opportunity to grow your knowledge and understanding of your own reproductive health. Learn what is normal and when to ask for help.

· Empower yourself with the latest evidence from trusted sources, who can verify their qualifications and background

· Reach out for social support early. Know you are not alone and that reproductive health is as important as other areas of health. You do not have to suffer in silence. Reproductive health is a fundamental human right.

7. How can people find you?

www.pmddandme.co.uk

pmddandmecic@outlook.com

Twitter: @PMDDandMeCIC

Facebook: @PMDDandMeUK

8. How do you give back?

We give back as much as we can and are a recognised Community Interest Company. A CIC is a business that works to invest in the wellbeing of the community it serves. At its heart a it is a social enterprise that rather than being driven by the need to maximise profits, tackles a wide range of social and environment issues to achieve public good, thereby creating a strong, sustainable and socially inclusive community.

We have recently begun a five year partnership with a small charity in Lamu County, Kenya to provide a Reproductive Health Intervention Programme. We will be providing education, resources and support for over 150 women and children to improve outcomes. The first stage of this programme is to provide safe, reusable and sustainable sanitary wear to the whole town to enable the women and girls to remain part of society during their periods. We hope that we will be able to safely travel to the area in 2021 and 2022 to provide intensive education to the local doctors, nurses and midwives to reduce the maternal and neonatal mortality rate in the county.



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