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Q&A - Living With PMDD
21
Apr
Q & A with Lynda Pickett
Lynda is The Australian Project Coordinator for Vicious Cycle: Making PMDD Visible
Lynda is a mother of two young boys, living on the south coast of New South Wales, Australia, she is also a survivor of Premenstrual Dysphoric Disorder - a condition very few people have heard of.
She is passionate about raising awareness of PMDD so that other people who are living with it don’t continue to suffer alone and undiagnosed.
Below she discusses the frustration of people confusing the disorder and downplaying it as PMS, a reaction all too common for fellow women who present symptoms– even her doctor dismissed her first consult. This is her story about how she has learnt to manage and live with the symptoms through the support of her family and the wonderful PMDD community.
What is PMDD?
Premenstrual Dysphoric Disorder (PMDD) is a hormone-based mood disorder, characterised by severe psychological, and sometimes physical symptoms, that arise in the luteal phase of the menstrual cycle, and are a severe reaction to hormonal fluctuations.
Symptoms
- Mood/emotional changes (e.g., mood swings, feeling suddenly sad or tearful, or increased sensitivity to rejection)
- Irritability, anger, or increased interpersonal conflicts
- Depressed mood, feelings of hopelessness, feeling worthless or guilty
- Anxiety, tension, or feelings of being keyed up or on edge
- Decreased interest in usual activities (e.g., work, school, friends, hobbies)
- Difficulty concentrating, focusing, or thinking; brain fog
- Tiredness or low-energy
- Changes in appetite, food cravings, or overeating
- Hypersomnia (excessive sleepiness) or insomnia (trouble falling or staying asleep)
- Feeling overwhelmed or out of control
- Physical symptoms such as breast tenderness or swelling, joint or muscle pain, bloating or weight gain
These symptoms occur during the week or two before menstruation and go away within a few days after bleeding begins. A diagnosis of PMDD requires the presence of at least five of these symptoms.
The symptoms are associated with clinically significant distress or interferences with work, school, usual social activities or relationships with others (e.g. avoidance of social activities, decreased productivity and efficiency at work, school or home).
When did you first realise you had symptoms?
I breastfed my first child for 8 months, so it was a while after childbirth that my menstrual cycle returned – not until after weaning. When it did, I noticed for the first time I was very anxious and extremely irritable in the week leading up to my period. I was having increased conflicts at home, crying uncontrollably for no reason at all and I began having panic attacks the day before my bleed like clockwork.
This was very different to how I had been in previous months. Nothing had changed in my environment or life. The only thing that was different was the return of my menstrual cycle and my distress seemed very connected to the luteal phase of my cycle. I’d never really had bad PMS or anything like that, so I sought the help of a GP.
Did it take a while to diagnose?
When I first presented with symptoms to my doctor, I felt my experience was somewhat downplayed as being just PMS – something that all women experience. When I insisted it was much more intense than that, I was sent for routine blood tests to rule out a hormone imbalance and/or thyroid issues.
When those results all came back normal, I was going to be dismissed, with encouragement to look at what could be going on in my life to cause me to be so stressed. Was I getting enough sleep? Was I unhappy with my partner? Was I having trouble coping being a new mum? But I knew it wasn’t any of those things. I felt so strongly that my symptoms were being caused by hormones that I broke down in tears in the doctor’s office. My doctor read out the description of PMDD from a medical book. I had heard of it when searching for answers online and I agreed it did fit perfectly.
Symptom and cycle tracking confirmed the PMDD diagnosis and this was also confirmed later by a specialist in reproductive endocrinology as Severe Premenstrual Dysphoric Disorder. I was also assessed by a psychiatrist and had Bipolar disorder ruled out, as rapid-cycling bipolar can present similarly.
Diagnosis can be a long process as it sits somewhere in-between psychiatry and gynaecology and lots of other mimicking conditions need to be ruled out. I was lucky that I was diagnosed within the first year of symptoms presenting. The average lag to diagnosis in Australia is 8 years!
Do people commonly confuse PMDD for PMS? Is that frustrating?
Yes, all the time! So let’s set the record straight…
Most people who menstruate will encounter PMS (around 80%).
PMDD affects around 5-10% and is much more severe.
PMS is a normal set of physical (and sometimes mild emotional) symptoms that happen in the week before menses onset. PMS usually doesn't cause much, if any, life disruption. PMDD, on the other hand, is characterized by severe, life-impairing emotional symptoms (and sometimes also physical symptoms) that can last anywhere from 1-2 weeks prior to menses onset.
In 2017 the National Institutes for Mental Health (NIMH) made a significant scientific discovery showing that women with PMDD had abnormal cellular response to the rise and fall of ovarian steroids when compared with other women.
How many people does it affect?
PMDD severely affects somewhere between 5-10% of women and individuals assigned female at birth who are of reproductive age. So around 1 in 20 women. This number doesn’t account for those who have had their ovulatory cycle suppressed by hormonal, chemical or surgical means. It is speculated that up to 90% of people living with PMDD are undiagnosed. It is not uncommon for PMDD patients to be misdiagnosed as bipolar or as having generalised anxiety or depression.
A recent study found that 30% of respondents living with PMDD had attempted to take their life to escape their severe symptoms. A much higher percentage had experienced suicidal thoughts and self-harming behaviours.
What are some ways you have learnt to manage the symptoms?
I was unable to maintain an acceptable quality of life living with PMDD and ended up opting to undergo surgery to manage my severe symptoms. I had a total hysterectomy with bilateral oophorectomy (uterus, tubes and ovaries all gone).
I now maintain a reasonably steady hormonal state with add-back hormone replacement therapy (HRT) taken each day. This means I no longer have to contend with the monthly rise and fall of ovarian steroids sending me into a spin. Being plunged into surgical menopause and balancing HRT levels has been no walk in the park, but my life is much improved with the elimination of my menstrual cycle. It’s not a decision to take lightly and people should exhaust all other treatment options before considering such a radical step. Having said this, it has literally saved my life.
Other treatment options include natural therapies including calcium, magnesium and B6 supplementation, increased exercise and following an anti-inflammatory diet, limiting caffeine and alcohol intake. Drospirenone-containing oral contraceptive pills such as Yaz or Zoely, medications such as SSRIs, hormonal ovarian suppression, GNRH Treatment (synarel or zoladex) which puts you into a reversible chemically-induced menopause with add back HRT and as a last resort - Total Hysterectomy with Bilateral Salpingo Oophorectomy (THBSO).
The problem with all of the current treatments for PMDD is that they were all designed to treat other conditions. The world’s FIRST ever PMDD-specific treatment (Sepranalone) is currently in clinical trials and is having promising results. My hope for future generations is that more funding, research and treatment developments will result in PMDD patients being able to manage their symptoms without having to have their reproductive organs removed.
Does it affect your family?
By definition PMDD affects your ability to maintain relationships and to work. At its worst it most definitely impacted on my ability to parent, caused conflict in my intimate partner relationship and I was unable to return to work. This in turn affects family income, creates unhealthy coping strategies, social isolation and a whole heap of emotional fall-out from living this way for so long.
I am lucky to have a very understanding and supportive network of friends and family surrounding me. Not everyone does and I feel for those who have lost jobs and relationships and not had help with parenting when they have struggled with this.
Is there a PMDD community?
YES!
I don’t know where I would be without my fellow PMDD peeps. This is the term we use to refer to people who live with PMDD amongst our online community. If you use the hashtag #pmddpeeps on Instagram or Twitter you will be able to find and connect with others. On Facebook there is a massive support community with closed peer support groups in most countries. There are Australian-based ones, ones for partners, ones for people with additional mental health comorbidities, ones for people post-op, or child-free. Just use the search bar to locate a group that’s right for you.
The best thing about these groups is the support you receive from people who truly understand what you are going through. For every person who reaches out for help, saying they can’t do this anymore, there are dozens of others who will tell you yes you can. You’ve done it before and you can do it again. Don’t give up!
There are a few key organisations and groups in the PMDD community who are bringing PMDD peeps together:
Vicious Cycle: Making PMDD Visible
A patient-led project passionate about raising awareness of PMDD and improving the standards of care for people living with the condition.
The International Association of Premenstrual Disorders (IAPMD)
A global charity working to inspire hope and end suffering for those affected by premenstrual disorders through peer support, education, research and advocacy.
Me V PMDD
PMDD symptom tracking app.
Any other facts;
April is PMDD Awareness Month! This year’s theme is ‘Ignite the Fight’.
To get involved please visit the PMDD Awareness Month page. Here you can get involved in fundraising, sign up to do a virtual race, see landmarks and iconic buildings lighting up teal (the official PMDD awareness colour) to ignite hope, take park in the #pmddawarenesschallenge on Instagram and much more!
If you have symptoms or want to know more, please reach out to your doctor or health professional.
