PMDD & Me ISSUE 1
DAYS TO SELF-CARE
PMDD AND ADHD
MY THE MENSTRUAL CYCLE MOMENT UNWRAPPED OF CHANGE HOW WELL DO YOU KNOW YOUR CYCLE?
Welcome to the first edition of PMDD & Me, a digital publication bringing the latest, evidence-based information directly to you with the primary goal of empowering you to own and speak up for your reproductive health. PMDD & Me is a Community Interest Company, founded in 2018 by Alice and Sarah. Alice suffered from severe Premenstrual Dysphoric Disorder (PMDD) for 20 years before opting for the last line treatment option of a total hysterectomy with bilateral salpingo-oophorectomy in 2016 at 30 years old. As a midwife, Alice took a specialist interest in reproductive health and with the support from her wife, founded a not-for-profit organisation to support others through their PMDD journey. Together, Alice and Sarah have work to raise awareness of PMDD, and the impact that a mentrual disorder can have on the sufferer, their relationships, professional career and overal quality of life. What they discovered was a huge community of international support. Since the on-going effects of the Covid-19 pandemic continues to restrict people's ability to meet in a physical sense, the online network has been instrumental in continuing to raise awareness of PMDD and other reproductive and menstrual health disorders. This brand new digital publication brings the research and current debates directly to you, in an accessible and freely available way so that you can become the expert patient and advocate for yourself.
THE MOMENT OF CHANGE EDITORIAL
“It’s called Premenstrual Dysphoric Disorder” – these were the words, heavy with the pregnant pause of uncertainty that will mark my day of diagnosis.
In my naivety, I thought that this would be it – now I had been diagnosed, everything would be fine – I could take the medication and my symptoms would disappear.
In 2019, I stood on a stage in front of hundreds of people and whole lifetimes of debilitating PMDD, spanning across generations, over oceans, and time zones.
Sitting in my car, outside of my GP surgery, I tentatively tapped the phrase into Google and hit search. In less than a second, I was faced with a catalogue of symptoms, medical articles and a digital maze enticing me into over half a million possible avenues, thick with the brambles of fake news, snake oil and unfathomable statistics.
But PMDD is not like a toothache – you can’t simply fill the cavity and be done with it. My journey towards recovery has taken seven years, and although I am now in the best mental health of my life, it is a state of mind that I work hard at every single day.
The crazy idea I had whilst sitting on a bus one day, was now staring at me with hushed anticipation as the first PMDD & Me Conference began. My wife Sarah gave me the thumbs up, the cameras lit up, and my microphone went live.
I could sit here and tell you about the endless days and nights of uncontrollable symptoms, and about how the bitter, stale taste of treatment resistant PMDD hangs in your mouth, but that’s not what this editorial is about.
This was it, the day that my journey had been leading to. It wasn’t fate, it was a choice. A choice I had made to empower myself, and in doing so, others in being their own reproductive health advocates.
Today I tell you about how I stopped fighting against PMDD, and accepted it as a part of what made me the person I am today.
That day will stay with me forever. I was so proud of our achievement. I almost surrendered to PMDD, but I used that as my moment of change.
I knew my brain was different to others, and the overbearing feeling of failure was infiltrating every part of my life. Now, finally, I had a name to put to it, a label I could explore. Little did I know of the journey that lay ahead of me, and the challenges that I would face along the way.
That night, unable to sleep, still buzzing from this unforgettable day, it struck me – if we could do this, from our sofa with just 8 months of planning, imagine what we could achieve in a year, two years, five! I knew that this couldn’t be it, we couldn’t stop here. Poet and feminist Adrienne Rich once said “The moment of change is the only poem”. My moment of change was when I stopped fighting against my diagnosis, and stopped listening to the poison parrot on my shoulder telling my that it was a failing, a character flaw I should be ashamed of. As soon as I stopped fighting my PMDD, it lost its power over me. I ultimately chose to have a total hysterectomy, a deeply personal choice that I had to come to by myself, and for myself. It is by no means the solution for everyone, and I would never presume otherwise. Nor is it a quick fix. The journey to recovery doesn’t end as you walk through the hospital doors for this last resort therapy.
AS SOON AS I STOPPED FIGHTING MY PMDD, IT LOST ITS POWER OVER ME. It is in fact a crossroads, and you have chosen your next turn. The process of healing goes beyond the physical, and very little has been written about the long-term impact of PMDD on your mental health post-surgery. I found solace in the unbreakable and unconditional love of Sarah, and I never take this for granted. What we have built and created through PMDD & Me CIC is beautiful and precious.
Even now, when we face uncertainty in these unprecedented times, we pick ourselves up and start again. Because this is what PMDD taught us; it will pass, the sun will rise again, and the fog will disperse. Our plans for our 2020 and 2021 conferences may be fading into memory, but the drive to enact change and make a different is not. In creating PMDD & Me as a Community Interest Company, we took a pledge to honour the needs of those which we serve through sustainable and socially responsible initiatives. We seek to educate, empower and enrich your understanding of your own reproductive health, so that you can find your inner strength and your moment of change. Our experiences of PMDD are unique to us all, but when we come together our voices sing out like a choir and we can and will be heard.
The Menstrual Cycle Unwrapped
How well do you really understand your menstrual cycle? It's fair to say that our school education was lacking in it's focus on what it means to have ovaries and a uterus. Beyond biology lessons and the mandatory awkward sex education classes, was it really talked about? Was it debated and discussed? Did you feel comfortable asking questions? The answer is likely no. Why then, are we surprised to find ourselves
confused and embarrassed as adults when confronting a menstrual disorder? Research in 2016 surveyed a sample of 125 American women of childbearing age and found that whilst over 80% understood their reproductive anatomy (uterus, ovaries etc.), only 31% were keeping track of their menstrual cycle and over half didn't know when their next period was due. Just 53% knew what ovulation was and and 67% didn't know when they ovulated.
While it is important to acknowledge that this research did not take account of educational background, or make any attempt to reference gender identity, the results, are nonetheless stark and concerning. Understanding not only the biology, but what is normal for you is the first step in becoming the expert patient when suffering with a menstrual health disorder such as PMDD. Read the research at: pubmed.ncbi.nlm.nih.gov/27157718
Day One Your period and the Follicular Phase of the cycle will start. Flow and length of periods are different for everyone, and can vary month to month. In a typical 28 day cycle, a period will last around six to eight days. Oestrogen and Progesterone levels are low at the beginning and gradually rise.
Day Menstrual Cycle
Oestrogen levels start to rise and the pituitary gland, found in the brain, sends hormone signals (Follicle Stimulating Hormone or FSH, and Luteinising Hormone or LH) to the ovaries to prepare for ovulation. This is usually the phase of fewest PMDD symptoms.
Day Thirteen to Fifteen Oestrogen levels dip, FSH and LH peak and the overaries release an egg. This is called ovulation. Usually just one egg is released per month from alternating ovaries.
Day Sixteen to Twenty-Eight If the egg is not fertilised by a sperm, the body enters the second half of the menstrual cycle called the Luteal Phase. In this phase the hormone Progesterone begins to rise, reaching a peak around day 21 or 22. Oestrogen levels rise slightly around this time too, but then continue to drop for the rest of the cycle. After day 24 Progesterone steadily lowers until the uterus receives a signal from the brain to shed the lining and start the cycle again as day one. Typically for people with PMDD the luteal phase is when they experience the most severe symptoms, but for many symptoms begin as early as day nine.
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SELF-CARE Part 1
Self-care is not selfish. Making your health and happiness a priority is not a luxury, it is a necessity.
Knowledge point Self-care
"The ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a healthcare provider”. - World Health Organisation 2021 -
Self-care is a term used with increasing frequency in today's modern society. There is a much greater public health focus on the promotion of an individual's ability to have insight into their physical and mental health needs, and yet there remains relatively little education as to how to actually put it into practice. Arguably the skill of self-care is essential for someone living with a long-term health illness or disability, and this population are more likely to experience barriers in the application of the skills, particularly when selfesteem and self-worth is low (Baumann and Dang 2012; Blixen et al 2016).
Self-care during your period So your period has started and you are likely experiencing a whole range of different physical and emotional effects. Common symptoms include: Bloating Abdominal cramps Headaches Fatigue Breast tenderness Lower back pain Acne Insomnia Irritable bowel Increased appetite Low self-esteem Low mood or depression Anxiety Brain fog and trouble concentrating
Ask yourself; What are the three key barriers you face in your own self-care? Are these barriers present every day? Or are they a bi-product of your PMDD and therefore dependent on the phase of your cycle? From our own personal experience and from talking to other PMDD sufferers, we have compiled a list of 28 days of self-care to inspire and motivate you. We have arranged them according to a typical menstrual cycles affected by PMDD and in Part One we focus on your period. We'd love to hear what worked for you - Tweet us @PMDDandMeCIC and tell us your top tips for selfcare!
Your self-care during your period needs to focus on nourishing your body as it is undergoing physical change. It's really important that you are not too hard on yourself and do not set unachievable expectations. Nourish your body: Make positive choices to eat naturally colourful foods rich in vitamin C and D, magnesium and iron. As cliche as it may sound, getting your '5 a Day' will boost energy levels, lift moods, and help reduce brain fog, abdominal cramps and bloating (Saeedian Kia et al 2015). Take it easy: Use your time to rest and let your body recharge. Balance this with gentle exercise. Research proves that just 20 to 30 minutes of gentle to moderate exercise is enough to release your natural pain killer endorphins and improve quality of sleep, lift your mood and reduce bloating (Harvard Health 2020). Go natural: Recent research has shown that organic tampons and pads reduces the risk of thrush, allergies, irritation, and contact with bleaching chemicals and cotton insecticides, as well as being free from micro plastics (NIEHS 2021).
Have a cuppa: Many physical symptoms associated with periods such as cramping, irritable bowel and back pain are linked to inflammation (Palomba 2011). Ginger and Camomile herbal teas are proven to be effective in reducing inflammation and period pain (Rahnama et al 2012; Srivastava et al 2010). Research has also shown that ginger tea can even have a positive impact on reducing blood loss (Kashefi et al 2014). Up your fluids: Low levels of Oestrogen and Progesterone during your period causes water retention, leaving you feeling bloated, sluggish and likely to experience dehydration headaches. Increasing your water intake may sound counter productive, but it will reduce the symptoms by improving kidney function.(Blau et al 2004; Popkin et al 2010). Sleep: People with PMDD are more likely to suffer from poor sleep, and this is heightened during the luteal phase leading up to your period (Jehan 2016). Turn off electrical devices in the evening and go to bed at a regular time. Your body craves rest during your period and a healthy sleep will increase your chances of a restful night (Sleep Foundation 2020). In 28 Days of Self-Care Part Two we explore self care during Ovulation... Sources: Blau JN, Kell CA, Sperlinh JM. Water-deprivation headache: A new headache with two variants. Headache Journal of Head and Face Pain. 2004 Jan;44(1):799-83. DOI:10.1111/j.1526-4610.2004.04014.x Harvard Health Publishing. Exercising to Relax. 2020. Online. https://www.health. harvard.edu/staying-healthy/exercising-to-relax Jehan S, Auguste E, Hussain M, Pandi-Perumal SR, Brzezinski A, Gupta R, Attarian H, JeanLouis G, McFarlane SI. Sleep and Premenstrual Syndrome. J Sleep Med Disord. 2016;3(5):1061. Epub 2016 Aug 3. PMID: 28239684; PMCID: PMC5323065. Kashefi F, Khajehei M, Alavinia M, Golmakani E, Asili J. Effect of ginger on heavy menstrual bleeding: a placebo-controlled, randomised clinical trial. Phytother Res. 2015 Jan;29(1):1149. doi: 10.1002/ptr.5235 NIEHS. Endocrine Disruptors. 2021. Online. https://www.niehs.nih.gov/health/ topics/agents/endocrine/index.cfm Popkin BM, D'Anci KE, Rosenberg IH. Water, hydration, and health. Nutr Rev. 2010;68(8):439-458. doi:10.1111/j.1753-4887.2010.00304.x Rahnama P, Montazeri A, Huseini HF, Kianbakht S, Naseri M. Effect of Zingiber officinale R. rhizomes (ginger) on pain relief in primary dysmenorrhea: a placebo randomized trial. BMC Complement Altern Med. 2012;12:92. Published 2012 Jul 10. doi:10.1186/1472-6882-12-92 Saeedian Kia A, Amani R, Cheraghian B. The Association between the Risk of Premenstrual Syndrome and Vitamin D, Calcium, and Magnesium Status among University Students: A Case Control Study [published correction appears in Health Promot Perspect. 2016;6(1):54]. Health Promot Perspect. 2015;5(3):225-230. Published 2015 Oct 25. doi:10.15171/hpp.2015.027 Shishira Bharadwaj, Matthew D. Barber, Lesley A. Graff, Bo Shen, Symptomatology of irritable bowel syndrome and inflammatory bowel disease during the menstrual cycle, Gastroenterology Report, Volume 3, Issue 3, August 2015, Pages 185–193, https://doi.org/10.1093/gastro/gov010 Sleep Foundation. What is Sleep Hygiene? Online. https://www.sleep foundation.org/sleephygiene Srivastava JK, Shankar E, Gupta S. Chamomile: A herbal medicine of the past with bright future. Mol Med Rep. 2010;3(6):895-901. doi:10.3892/mmr.2010.377
R E S E A R C H
C O R N E R
PMDD Prevalence in people with ADHD - Dorane et al 2021-
Prevalence of PMDD and Postnatal Depression is higher where ADHD is also present 45% of study participants had both ADHD and PMDD People with ADHD are more likely to experience mood changes during hormonal fluctuations
There may be a link with levels of Dopamine, ADHD, PMDD and low mood Treatments for ADHD may also help reduce PMDD symptoms Clinicians need to be aware of this possible link Further studies should focus on comparing the ADHD population with control groups across multiple menstrual cycles to determine more accurate links
There are many hundreds of research studies exploring AttentionDeficit/Hyperactivity Disorder (ADHD), and it is a well established fact that people with ADHD are at higher risk of anxiety and depression (Kessler et al 2005). For people who also have a menstrual cycle, evidence shows that they are more likely to have longer episodes of depression and higher risk of suicide (Bierderman et al 2008; FullerThomson et al 2016).
In contrast there has been very little research into the association of ADHD and menstrual disorders such as PMDD. One study has shown that where PMDD and ADHD is present, the sufferer is more likely to have worse clinical outcomes (Slyepchenko et al 2017). There is some evidence to suggest that people with ADHD are more sensitive to hormonal changes during
the menstrual cycle, and therefore experience more severe mood changes and PMS symptoms (Dorani et al 2021). This new research is the first of it's kind to look at the prevalence of PMDD symptoms, postnatal depression episodes after the birth of a first child, and mood symptoms in people with ADHD.
Attention-Deficit/ Hyperactivity Disorder
a neurological disorder that impacts the parts of the brain that help us plan, focus on, and execute tasks.
METHODS AND DATA COLLECTION
209 participants with a formal diagnosis of Adult ADHD and under the psychiatric care of an outpatient hospital in The Netherlands All were of childbearing age and had an active menstrual cycle Participants were interviewed by psychiatrists and assessed for co-morbidities (multiple disorders) including PMDD and postnatal depression Other data was obtained from medical records including previous history and medication use RESULTS PMDD was detected in 95 participants = 45.5% Postnatal depression episodes were identified in 85 participants = 57.6% Prevalence of PMDD in this group was high compared to those without ADHD Participants with both ADHD and PMDD were more likely to use antidepressants and contraceptives Participants with ADHD, PMDD and postnatal despression history showed significantly more mood disruption than those with ADHD alone WHAT DOES THIS MEAN?
Results suggest that people with ADHD and a menstrual cycle are more vulnerable to hormonal based mood disorders Changing hormonal levels (particularly Oestrogen and Progesterone) during the menstrual cycle may play a role in ADHD symptom severity Clinicians treating ADHD need to be aware of the possibility that the majority of those who also have a menstrual cycle may also display symptoms of PMDD and are more likely to experience postnatal depression episodes A NOTE OF CAUTION SOURCES
Researchers were not experts in diagnosing PMDD so may
Biederman J, Ball S, Monuteaux M, McCreary M, Cote M,
not have accurately recognised PMDD symptoms in the
Faraone S. New Insights Into the Comorbidity Between ADHD and Major Depression in Adolescent and Young Adult Females. J
American Academy Child Adol Psychiatry. 2008;47(4);426-434
Participants were all under the care of psychiatrists and
Fuller-Thomson E. ADHD casts a long shadow: findings from a
were deemed to have severe ADHD. This can impact the
population-based study of adult women with self-reported ADHD. Child: care, health and development. 2016;42(6);918-927 Kessler RC, Berglund P, Demler O, Jin R, Merikangas KR, Walters EE. Lifetime Prevalence and Age-of-Onset Distributions of DSMIV Disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry.2005;62(6):593–603
study findings Most of the data collected was first-hand from the participants and may have bias READ THE ARTICLE: Dorane F, Bijlenga D, Beekman ATF, van Someren EJW, Kooij, JJS. Prevalence of
Slyepchenko A, Frey BN, Lafer B, Nierenberg AA, Sachs GS, Dias RS. Increased illness burden in women with comorbid biploar and PMDD: Data from 1099 women from STEP-BD study. Acta Psych Scandinavica. 2017;136(5);473-482
hormone-related mood disorder symptoms in women with ADHD. Journal of Psychiatric Research. 2021:133;10;15. soi.org/10/1016/j.jpsychires.2020.12.005
GETTING SUPPORT WHERE TO GO FOR TRUSTWORTHY AND RELIABLE INFORMATION AND SUPPORT
International Association for Premenstrual Disorders - IAPMD www.iapmd.org @iapmdglobal
National Association for Premenstrual Syndromes - NAPS www.pms.org.uk @naps_pms
The Daisy Network www.daisynetwork.org @thedaisynet
Menopause Support www.menopausesupport.co.uk @MenopauseSuppo1
Vicous Cycle PMDD www.viciouscyclepmdd.com @viciouscyclepmd
GET IN TOUCH
Do you have any questions? A suggestion for a feature for future issues or need signposting towards the right services? We'd love to hear from you! www.pmddandme.co.uk @PMDDandMeCIC
© PMDD & Me Community Interest Company | 2021