The most important thing we can do as humans is walk a mile in another’s shoes. I believe it is impossible to remain closed to the plight of another when you see the world through their eyes and it is my hope that one day we will find compassion for the lives of those around us, even if we do not understand their journey.
Have you ever met someone with a condition you couldn’t pronounce, or never heard of? So you nodded politely while they explained a limitation or experience to you, because you had no context with which to relate? I sure have!
In today’s world it isn’t uncommon to come into contact with someone living with chronic illness, but what is a chronic condition? The word chronic refers to a persistent, recurring, or long-term condition requiring ongoing medical treatment. This can be autoimmune conditions such as diabetes (type-1) crohn’s disease, ulcerative colitis, interstitial cystitis, coeliac disease, fibromyalgia, rheumatoid arthritis and so forth, but it can also be a condition lasting one year or more such as migraine, lyme disease, heart disease, factor IV-Leiden etc.
According to IAPMD.org, PMDD is a cyclical, lifelong disorder of genetic origin, affecting 2-10% of reproductive age women. (1) Rather than being a hormone imbalance like depression, it is currently classified as a severe intrinsic reaction to natural hormone fluctuations. Similar to the way a coeliac patient’s cells will react to the presence of gluten, the cells in a patient with PMDD react severely to the natural fluctuations of oestrogen and progesterone, which are hormones required for ovulation, menstruation, female sexual organ development, uterine mucosal density for sperm transportation and much more. (2.) They are essential hormones produced within every mammal.
Scientific studies have shown that women and AFAB individuals who experience severe, debilitating, life threatening PMS (PMDD) have an alteration in their genes compared to “normal” or non-PMDD patients. Studies suggest that our brain circuits work differently, they react in an opposite fashion to a progesterone metabolite (a molecule that breaks down progesterone) than non PMDD patients in that we react severely with agitation, anger, irritability, sadness, changes in appetite, feelings of sudden death, thoughts of suicide, extreme physical muscular and joint pain and so on. In non PMDD patients, the progesterone metabolite called allopregnanolone (ALLO for short) typically has a calming effect in mammals. It is possible although as far as I am aware, unproven, that PMDD patients may have developed a tolerance to the calming effect of ALLO. (3)
Symptoms of PMDD and atypical premenstrual symptoms were published in 1931 according to Oxford Medicine Online. In the United States, research was published in the 1980’s indicating the information I have lain out below, but PMDD wasn’t added into the diagnostic manual of mental disorders until 2013 and didn’t enter the mainstream social media until 2019.
It deeply saddens me to know in my own experience, a medical professional who is not aware of this condition can often brush it off or simply cannot treat you because they do not understand. It can be extremely difficult to get treatment, medication or any guidance from the medical professionals we rely on. Of course, the GP cannot be aware of all conditions, but I await the day that PMDD is commonly accepted and getting treatment doesn’t mean fighting for your life.
As I read the studies and research papers on PMDD, it felt like I was learning about a murder case, I knew it was bad but I couldn’t necessarily emotionally connect with just how bad, so please allow me to detail my experience a bit further. Please read with caution, this could be very graphic or triggering to some readers. It is important to note that PMDD is classified in the DMV-5 as a mental disorder, whereas PMS is not, PMDD requires medical treatment and PMS can be severe but is entirely separate from PMDD.
It hits like a freight train from one day to the next and you can’t escape the tracks. The physical pain, the emotional pain, the mental anguish and feelings of dread and despair. Like a new person has inhabited your body, your mind and your thoughts and you cannot do a single thing to control it.
Normally I feel amazing all over, inside and out. I have a few minor medical issues but I can treat them with over the counter medication and a healthy lifestyle. I can’t explain the pain and frustration of knowing that your body is betraying you, its own self, month after month. It’s easy to feel broken and question why you are having this experience? Did I do something majorly wrong to deserve this? Is it just a simple matter of scientific genetic expression, or is it something more?
Do I have to live my entire life like this, and if so, what’s the point?
These are common thoughts I experience and from my inclusion in many online circles of PMDD sufferers it is common in them too. Therapy is an amazing treatment, but most importantly you need to be surrounded by loving, understanding, supportive people in your life.
What Does it Feel Like?
If you have ever lost a close family member, or best friend, or family pet then you may be familiar with the feeling of grief. It is an all encompassing, drenched feeling in the center of your heart. The words that come to mind when describing the feelings associated with the cyclical phase of PMDD (hell week as we call it) is despair, anguish, grief, deep sadness, dread and frustration. This is what it feels like inside you as your body struggles to cope with the second phase of your pre-menstrual cycle.
Physically everything aches, your bones, your muscles, sometimes they spasm uncontrollably and the migraine is so severe it causes vomiting and vision loss. You either lose your appetite or feel like you can't get enough to eat, and if you stop eating you may suddenly starve to death. Typically I experience IBS, bloating, nausea and other digestive issues, whether these are related to PMDD I cannot say. I do believe (but need to check) that it isn’t uncommon for people with autoimmune conditions to experience more than 1.
I recently recorded in my symptom tracker a feeling of sudden loss, or sudden doom, in the middle of a bright and sunny day I suddenly had this sad, fear that all I loved would be lost, taken from me and I would face a dramatic end. I write this and think of a Shakespearean play, over dramatic and only slightly possible in some manic world.
It is difficult to open up about this experience because in some instances all is well, all is normal, but then a week or two later I am cancelling appointments, meetings, and scheduled calls because I can barely leave the house, or get myself off the couch. I work from home now, but I am entrenched in fear that when we are forced to return to the office, I won't be able to keep my income.
For over ten years I lost jobs, relationships, friends, positions in school (I was a student at the time.) When I got to university it hit me the hardest. Unfortunately, back then, doctors could only speculate and did their best to treat the symptoms, but it took me and my lifelong doctor over ten years to figure out the magic cocktail of medications and to this day it is still changing. I never went to medical school as I intended, I instead moved to Europe to work and study but have yet to go back to school. Writing this article inspires me to go to medical school and become a scientist who can one day cure PMDD and other reproductive related illnesses. After my pre-medical studies in the states I began studying yoga, Ayurveda, traditional Chinese medicine, herbology, shamanism, homeopathy, nutrition, personal training and strength training, meditation and so forth. I tried every natural remedy and treatment I could, and while they have been incredibly helpful, there is no cure, and I have recently come to terms with this in this past year.
I once had it put very succinctly to me by my therapist that “you wouldn’t take a diabetic patient off of their insulin, you just wouldn’t, and everybody knows that. So why would you take yourself off of the medications that keep you alive too?” That was in January, it is now August I haven’t given up on my natural remedies and I continue to learn about both western medicine and eastern medicine, I look at PMDD holistically and some of the greatest breakthroughs I have had with this illness have been emotional blockages that I could clear with simple meditation and empowering thoughts.
I am so grateful for my partner who as a scientist, has explained to me that utilising pharmaceutical medication is just science, it doesn’t have to be emotional. I no longer carry guilt for not being able to fix this on my own, or for having it in the first place. I no longer punish my body or my mind by beating myself up for being “less-than” my friends and family who CAN participate in normal life activities. I may never be able to play sports again, I may never be able to work in my 8-5 job with 2 hours of commuting 5 days a week, and I may never be able to have children, but I may change the lives of someone living with this disorder who is unaware, or hasn’t received the right diagnosis yet. I may inspire someone who is capable of conducting research and medical studies to solve this mystery so PMDD patients can have children and raise them without feelings of suicide every 27 days.
Somehow, living with chronic illness and autoimmunity has taught me to be hopeful, to see life as a blessed opportunity for growth and advancement, it has lead me to a very spiritual outlook and immense faith in something greater than myself, that I am here for a purpose. I used to take so much for granted, including my life! Now, I wake up everyday and give thanks, I have surrounded myself with understanding people who aren’t hard on me when I need to re-arrange our plans, or I can't physically show up.
It is a lifelong lesson in patience, self-compassion, and has taught me to be really good at meditation! Some of the skills I have gained just from teaching myself to live with this condition have actually made me a great teacher for others.
Thank you for reading, I hope you gained some new insight into life with chronic illness. If you are suffering with this or something similar, you are never alone, I found amazing people on instagram, various groups on Facebook, various tools, methods and helpful tips for dealing with reproductive diseases.
There is hope! And most importantly of all, even if you are someone who strictly does not agree or believe in pharmaceutical medication, you are allowed to take medication that helps you live your life. You do not need to feel guilty and you may not need them forever. But the world needs you here, even if that means you need a little help along the way.
Further Reading, provided by IAPMD.org:
1. IAPMD. (n.d.). What is PMDD. [online] Available at: https://iapmd.org/about-pmdd [Accessed 22 Jul. 2020].
2. Findlay J.K., Liew S.H., Simpson E.R., Korach K.S. (2010) Estrogen Signaling in the Regulation of Female Reproductive Functions. In: Habenicht UF., Aitken R. (eds) Fertility Control. Handbook of Experimental Pharmacology, vol 198. Springer, Berlin, Heidelberg
3. Zachar, P. and Kindler, K. (2020). A DSM insiders’ history of premenstrual dysphoric disorder. [online] https://oxfordmedicine.com/. Available at: https://m.oxfordmedicine.com/mobile/view/10.1093/med/9780198725978.001.0001/med-9780198725978-chapter-41 [Accessed 14 Aug. 2020]. Chapter: A DSM insiders’ history of premenstrual dysphoric disorder Source: Philosophical Issues in Psychiatry III: The Nature and Sources of Historical Change Author(s): Peter Zachar and Kenneth S. Kendler DOI: 10.1093/med/9780198725978.003.0041.
4. medicalxpress.com. (n.d.). Sex hormone-sensitive gene complex linked to premenstrual mood disorder. [online] Available at: https://medicalxpress.com/news/2017-01-sex-hormone-sensitive-gene-complex-linked.html [Accessed 22 Jul. 2020].
Non-Specifically Cited Citations Retrieved from IAPMD Article:
Pagano, M.D., T. (Ed.). (2014, June 28). Sexual Health: Your Guide to Premenstrual Dysphoric Disorder. Retrieved April 23, 2015, from http://www.webmd.com/women/pms/premenstrual-dysphoric-disorder?page=2
Gallenberg, M.D., M. (2012, December 14). What's the difference between premenstrual dysphoric disorder and premenstrual syndrome? Retrieved April 20, 2104, from http://www.mayoclinic.org/diseases-conditions/premenstrual-syndrome/expert-answers/pmdd/faq-20058315
Goldberg, M.D., J. (Ed.). (2014, September 7). Depression, Thyroid Conditions, and Hormones. Retrieved April 23, 2015, from http://www.webmd.com/depression/guide/depression-the-thyroid-and-hormones
Diagnostic and Statistical Manual of Mental Disorders (5th ed.), (2013), American Psychiatric Association. Washington, DC.
PMDD Research — UNC Center for Women's Mood Disorders. (2016).Med.unc.edu. Retrieved 17 March 2016, from https://www.med.unc.edu/psych/wmd/research/pmdd
Huo L, Straub RE, Roca C, et al. Risk for premenstrual dysphoric disorder is associated with genetic variation in ESR1, the estrogen receptor alpha gene. Biol Psychiatry. 2007;62(8):925-933.
Comasco E, Hahn A, Ganger S, et al. Emotional fronto-cingulate cortex activation and brain derived neurotrophic factor polymorphism in premenstrual dysphoric disorder. Hum Brain Mapp. 2014;35(9):4450-4458.
Girdler SS, Straneva PA, Light KC, et al. Allopregnanolone levels and reactivity to mental stress in premenstrual dysphoric disorder. Biol Psychiatry. 2001;49(9):788-797.
Hantsoo L, Epperson CN. Premenstrual Dysphoric Disorder: Epidemiology and Treatment. Current psychiatry reports. 2015;17(11):87. doi:10.1007/s11920-015-0628-3.