Suzi is the published author of I Blame The Hormones. From the onset of puberty Suzi Taylor struggled with depression and anxiety. For many years her health was severely compromised and the episodes of mental instability caused severe suicidal ideation. After the birth of her second child, Suzi suffered a psychosis which gradually became cyclical once menstruation recommenced. Gradually, and with the help of menstrual charting, Suzi was able to see a correlation between her menstrual cycle and depressive episodes. Suzi is a blogger and writer and is also on the panel of Action on Menstrual psychosis. She is passionate about raising awareness and reaches out to people from across the globe with the same disorder.
Suzi is a kind and generous woman who welcomed me into her family home. Over coffee we talked about our experiences with PMDD, and it was so validating to talk face to face with a fellow sufferer. Suzi talked excitedly about her plans for her second book, a follow up to the hugely successful I blame The Hormones. I also had the opportunity to meet her lovely family and talk to her husband about how PMDD affected him.
Like two friends who had known each other for years, we broadcast a live interview, which has so far reached over 2,500 people. You can watch the full broadcast by opening this link. Following on from the huge response we had from the broadcast, I have been back in contact with Suzi with some more of your questions.
Suzi will be speaking at the PMDD & Me Conference on 13thApril 2019, and will be available all day to answer your questions. Tickets for this event will sell out quickly, so book now to avoid disappointment.
Can you tell us a bit about yourself?
My name is Suzi Taylor and I’m a long term sufferer of PMDD. I have had a chequered emotional past with suicide ideation and major depressive disorder. I also have three sons and suffered a psychotic episode after the birth of my second child. I live In Surrey, UK with my husband and I am a dog breeder, writer and blogger. My first publication, I Blame the Hormones is written under the pseudonym of Caroline Church and is my memoir of my emotional difficulties and in particular my experience of PMDD.
When did you start to suspect that there was something more to your PMS?
I started to wonder if there was more to my PMS when just before onset of menstrual period I would have suicidal thoughts, panic attacks and severe depressive episodes. I also suffered with enormous physical illnesses such as shingles, severe joint pain and exhaustion. I would also have nightmares and would sometimes feel very strange indeed. After the psychotic episode, I had started to realise that monthly I would have a ‘mini-psychosis’ which is when I decided to track and chart my symptoms
You said during the live broadcast that you were “sick of being sick” and lived in dread of your next cycle, what made you say “enough is enough” and start to seek out treatment?
I started to seek out treatment by first researching at the library, I had no internet, but every day I researched more and more and insisted from my GP that I had more help and further intervention. I then started to see a fixed pattern and my physical and mental health declined even further. During the year 2002 I had severe recurrent tonsillitis, urine infections and my legs would be restless and agonising. By now I was acutely unwell and the depression and anxiety were crippling.
It was really interesting to hear about how your PMDD-free phase got progressively shorter and that it felt like you were “walking through treacle”. How did you cope with this on a day-to-day basis?
After the birth of my 3rd child, I noticed that the time in between cycles was becoming shorter and shorter. I was by now pretty much bed bound and was unable to work. I describe it as “walking through treacle” as I felt so exhausted that I couldn’t function and sometimes my legs wouldn’t carry me. To say it was no life was an understatement and I then insisted I had a referral to Mr Nick Panay at the Chelsea and Westminster Hospital. By now I was 40 and had been ill for most of my life. By the time we saw him, my husband and I were absolutely desperate.
What did you find helped you most during a PMDD crisis?
During a PMDD crisis, I would use natural progesterone CYCLOGEST which was available on prescription. I seem to be one of the very few who isn’t intolerant. I also used SSRI medication and Diazepam. The only thing that would help was going to bed in a silent room. This was because I suffered from Misophonia, so I was acutely sensitive to sound. This would be a trigger for me and start a catastrophic reaction, namely irritability and mood swings. Sometimes the crisis was so bad I would run away from home.
You are on the panel for Action on Menstrual Psychosis. Can you tell us a bit more about what this organisation does? And where can we get more information?
I am now a Panel member of Action on Menstrual Psychosis which was set up by the amazing Professor Brockington. The main focus of this panel is to collect data and identify what causes PMDD. You can find more information from Professor Brockington himself and he is always looking for more suffering women to build up a picture and a profile for his next monograph. He is also interested in women who have had depression and psychosis after childbirth.
What would you say to the younger PMDD version of yourself?
To my younger self I would say KEEP A CHART! You are sick and it is not a weakness or anything you are doing wrong. Had I known the correlation between the menstrual cycle and my emotional health I would have found help earlier too. I would also urge myself to ask for help with regard to my suicidal urges and fantasies which could have saved me from a very serious suicide attempt.
What can we expect from you at the PMDD & Me conference next year?
At next year’s conference I will be showing a timeline of events from puberty to menopause and then offering a Q and A for those that want to ask me any questions. I will also be sharing my latest raw data from 23andme which explains the mutations I have in my genetic blueprint, which I believe to be responsible for my illness.
Thanks for your time! What is your key take-home message?
My take away message is to chart your symptoms meticulously every day for 3 months. This takes time and effort but is part of your self-care commitment. See the correct physicians and don’t take NO for an answer. Be strong in asking for help, and lastly; maintain hope. There is help available and you can access it easily online. By this I mean find support groups, organisations and other sufferers who can and will be there for you. Tomorrow is another day and you can face it when you aren’t alone…keep going.
Further guidance and resources
International Association for Premenstrual Disorders (IAPMD) is a global not for profit organisation providing education, support, advocacy, and resources for those affected by Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation of underlying disorders (PME).
Action for Menstrual Psychosis – The purpose of this blog is to provide some basic information and bring attention to a support network called Action on Menstrual Psychosis, created by Professor Ian Brockington to raise awareness of this condition.
23andMe was founded in 2006 to help people access, understand and benefit from the human genome. 23andMe offers two Personal Genetic Services: Health + Ancestry and Ancestry. Both services require submitting a saliva sample that you send to the lab for analysis. The Health and Ancestry Service provides insights on your genetic health, traits, wellness and ancestry.
SSRI – Selective Serotonin Reuptake Inhibitors: SSRIs are family of medications that increase the serotonin levels in your brain. They are commonly used to treat depression and anxiety, but can also be prescribed for other conditions such as Fibromyalgia and PMDD. SSRIs are recommended within the Royal College of Obstetrics and Gynaecology Guideline for the Management of Premenstrual Syndrome.
Misophonia: Misophonia is a disorder that is linked to the sensory processing area of the brain. Certain sounds cause immediate, negative and sometimes severe physical reactions. This sensitivity can have an adverse effect on a sufferer’s life, often causing interpersonal conflict and social isolation. Misophonia can be a temporary symptom within PMDD.