World Health Organization Validates Premenstrual Disorder as a Global Health Concern

BOSTON, MA, 14 June 2019 --  In a landmark decision, the World Health Organization (WHO) has added Premenstrual Dysphoric Disorder (PMDD) to the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11), validating PMDD as a medical diagnosis worldwide and confirming the growing scientific and medical understanding of this little known, debilitating and life-threatening condition.

This groundbreaking move gives PMDD its own ICD code (GA34.41), which will help drive diagnosis, treatment, reimbursement, and research. A staggering 60 million people globally, 1 in 20 people with menstrual cycles, suffer from PMDD, caused by an increased sensitivity to reproductive hormones during the luteal phase between ovulation and menstruation. This sensitivity leads to alterations in the brain chemicals and pathways that control mood and well-being. Symptoms include severe depression, mood swings, irritability or anxiety, and drastically increases the risk of suicidal behaviors. Appropriate diagnosis and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives.

“This decision is a game changer for PMDD,” according to Sandi MacDonald, Board President of the International Association for Premenstrual Disorders (IAPMD).  “The WHO has officially classified PMDD as a true and diagnosable disorder, and differentiated it from the wide collection of premenstrual symptoms commonly known as PMS.”

Historically, PMDD has been studied and treated by both (1) nervous system (brain) experts (neuroscientists and psychiatrists) and (2) reproductive system experts (reproductive endocrinologists, obstetrician-gynecologists). This multi-specialty approach has been reinforced by PMDD’s ICD-11 cross-listing in multiple chapters; the chapter on mental, behavioral, and neurodevelopmental disorders, as well as the chapter on diseases of the genitourinary system (system of the reproductive organs and the urinary system). This will foster more effective collaboration between these specialties.

“Given that evidence-based treatment algorithms for PMDD require a broad set of clinical expertise and skills, it is becoming increasingly clear that multiple providers with different specialties are required to offer truly comprehensive care for PMDD,” according to Tory Eisenlohr-Moul, PhD, IAPMD Clinical Advisory Board Chair and Associate Director of Translational Research in Women’s Mental Health at the University of Illinois at Chicago.

“The IAPMD recommends that clinicians build collaborative, multidisciplinary treatment teams for PMDD patients in order to facilitate patient access to the full range of evidence-based treatments. It is our hope that the inclusion of PMDD in ICD-11 will facilitate greater collaboration among treatment providers of differing specialties,” added Eisenlohr-Moul.

The ICD is published by the WHO and used worldwide for morbidity and mortality statistics, reimbursement systems, and automated decision support in health care. In May 2019, member states agreed to adopt the ICD-11, to come into effect on 1 January 2022. The system is designed to promote international comparability in the collection, processing, classification, and presentation of these statistics. Like the analogous DSM (which is limited to psychiatric disorders and almost exclusive to the United States), the ICD provides a common language that allows health professionals to compare and share health information across the globe.

The International Association for Premenstrual Disorders (IAPMD) is the leading voluntary health organization which aspires to create a world where people with Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME) can survive and thrive. Our mission is to inspire hope and end suffering in those affected by Premenstrual Disorders (PMDs) through peer support, education, research, and advocacy. What began as a collective of fellow suffers in 2013 has grown into a global movement accelerating the progress being made around the world.

The Voices of PMDD - Don't Wait Until It's Too Late

Day 100. 100 days since I have had my menstrual period. I’m 54 years old and finally heading into menopause. After a lifetime suffering from PMDD you would think this gives me joy, but all I taste are the ashes of my family, my ambitions, and myself. For decades PMDD has taken a monthly flamethrower to them all, and now I can only sift through the embers and mourn.

This disease has done terrible damage to everything that I wanted to be, and the person that I thought I was. Even though my husband understood the illness, my monthly insanity finally broke him and he was in the final stages of leaving me a year ago when leukaemia struck. Now we live together but separate, as I help him through the long dangerous recovery. We get on well enough but the loving intimacy is gone. He can’t tolerate me touching him, even as a comfort. Too late. Too late.

My grown sons love me but despise my behaviour. I’m sure I have ruined trust in women for the youngest one.

I work hard and am mostly appreciated at the office but it’s clear that my regular loss of emotional control has permanently stalled any career advancement.

I was a bright and positive young woman who truly believed I had a shiny place to make for myself and my family in this world, but this disease has made me betray the little girl that I was, the one who believed she was good and would do good things.

So I urge every one of you to fight, fight harder than I did, look for answers and for care that actually works for you whether it’s SSRIs, birth control, supplements, cannabis, diet, exercise, or therapy. Don’t get complacent. Don’t give up. Don’t assume your family can put up with this forever. Don’t wait until it’s too late. Too late is closer than you think.

~Anonymous

The Voices of PMDD - My Ten Year Struggle With PMDD

A guest post, written by a fellow PMDD blogger.

I was 20 years old when I knew things were not quite right. After suppressing my ovarian cycle for 3 months my symptoms were resolved and it was very clear I had a serious intolerance to my own hormones. I was told this is a complex situation that would disrupt my daily/monthly activities. What did this even mean? I struggled to understand this at such a young age, comparing my life (or lack of it) with my friends and those around me. I didn't even know it was called PMDD at this stage. I struggled to maintain relationships with family/friends, struggled to have a balance of life and each month was very much half lived. There were many dark days, spent alone hiding from the world. 

My GP at the time was completely ignorant to the severity of my symptoms, so much so that I started seeing a walk-in GP who has now become my main GP. He referred me to the PMS Clinic at Chelsea and Westminster Hospital in 2012- finally felt I was speaking with gynaecological doctors who understood and could help. I was excited to be cured and rid of this illness and I couldn't wait to finally start living a normal life. However, I was told there is no easy way to manage this and every case is individual, with a trial and adjusted medication plan. I went through rounds of Zoladex injections (surpressing my periods) and different doses of HRT to try control the PMDD. Zoladex was my saviour, ridding all my symptoms. The HRT gave me many side effects, but nothing was as bad as the PMDD. The doses of HRT had to be constantly adjusted, side effects become more unbearable and I decided to withdraw from the Zoladex and HRT in December 2013. It took about 8 months for my periods to return. Initially, things didn't seem so bad, but the hormones built up and the PMDD was back. I didn't quite know what to do and I was reluctant to go back on the Zoladex and HRT. I tried several contraceptive pills over a period of months, with no hope of control-august 2016. 

November 2016 to March 2017 was a blur, the PMDD was back. I was in denial, hiding the symptoms, struggling with work, found daily routines a strain and disengaged with activities. I avoided speaking to anyone about as I knew the only hope at this stage was to go back on the Zoladex and try other forms of HRT or I consider a Hysterectomy. I was 29 and couldn't quite understand how I was meant to make such life decisions. The questions of relationships, marriage and kids were always avoided. Eventually the PMDD became so overwhelming, I knew I was in trouble-emotionally I had entered a really dark place and the fear forced me to get help. I remember the walk to see my GP knowing he would take control and get me the help I needed. A couple of weeks later I was back at the PMS Clinic at Chel/West Hospital, on the Zoladex (suppression of my own hormones) and a different form of HRT. I was so anxious about taking this treatment again, but I had no choice. 

So where am I now? Life has been good since April 2017. I turned 30 years old in June 2017. I survived 10 years with PMDD!! I have learnt to appreciate the role of the medication and see how normal, balanced and full of life I can be when PMDD is not in control. Life feels new, exciting, opportunities seem possible and I feel so much love and happiness. I feel alive! I am able to forward plan and make commitments. I have also learnt to trust those around me - my friends have held me up during the most recent bad turn and reminded me of the person that I truly am. I never thought I would have such a strong circle around me and I cannot express how their energy and presence has been my saviour. For the first time in years I have been able to open up about my condition and my worries of the treatment and future. However, I still fear the future, the unknown impacts of the HRT. It is still a fight. I still worry about sharing all this with a man—will he ever accept me? what happens if I am taken off the medication? I want to get married, have kids and be happy. The difficulty lies in trying to achieve all this, whilst dealing with PMDD, taking medication that is variable and if it fails, the decision of having a Hysterectomy. It's a life changing decision, especially when you haven't had your own kids. 

I wrote this account for my fellow PMDD sufferers—you are not alone. The best advice I can give you is to find a GP who listens to you and lean on your friends when you are at your lowest point. Do not allow yourself to be alone. Do not hide or be ashamed. Face the PMDD head on. Those around you will make the decisions for you when you are not able to—trust in them. The other advice I can give you is to live life. Do not self hate. Make the most of the good days, rejoice in experiences, build relationships and laugh. Make the decisions that you need to, that best suit you and your life, so you can find a way of truly loving yourself.

The Voices of PMDD: Our Seven-Year Struggle With My Wife's PMDD

Recently on Facebook I came across a conversation where one couple who had experienced PMDD was reaching out to help another. The first woman had asked her husband to write a letter to the other woman, to help the second woman explain PMDD to her husband. She then posted his letter on Facebook. I knew right away this man's wisdom and clarity could help so many others...so I asked the couple if I might share the letter on my blog, and they graciously agreed.

Her name is Twilah, and she has a blog of her own, one having to do with navigating the American medical system. His name is Alec Johnson, and here is his letter:

I was asked to write this in an attempt to explain PMDD from my perspective as a husband who has experienced PMDD. I am also a Clinical Scientist with a quarter century experience in medicine and healthcare. I can tell you from my experience, PMDD is one of the most difficult disorders [to diagnose and cope with], for both the patient and her family.

I speak from seven years of experience living with my wife, who was Jekyll and Hyde. I only hope to provide some assurance to you that your feelings of frustration, anger, hurt, and disbelief are normal and understandable.

I also wish to convey from a clinical standpoint that your wife is not making anything up, nor is she able to control her disorder. Even if she had the greatest willpower of any human, she cannot will a hormonally-mediated disorder away.

My wife is a very intelligent, driven, and willful person whom I adore. That's why I married her! When we met she was a runner who ran 4-6 miles every day of the week. She was less than 10% body fat, and thus did not have periods. It is common for women with this low amount of body fat to stop menstruating. When we began dating we went out to dinner often, and shared more than a few bottles of wine. This slight change in her lifestyle over approximately 2 years caused her to gain a small amount of weight. Maybe 8-10 pounds on her 105-pound frame was enough to restart her hormones and periods. She began to change.

I noticed her becoming moody and anxious as well as not being very nice to me. I marked it off as stress from our upcoming wedding and honeymoon as well as normal work and life stress. Things were mostly fine and then one morning she called me from the emergency room saying she wanted to kill herself. This was all completely from left field. I had no idea what was going on.

My wife had been experiencing PMDD for a number of months at that point, and was doing okay at suppressing the symptoms. On this particular day she could no longer control the most powerful human chemical, hormones. Hormones are intensely powerful chemicals for both men and women. I would imagine you and I are at least similar in experiences as teen men. You most likely remember the intense desire for girls. Hormones, and particularly testosterone, were front and center in that. You and I could no more control that intense desire that my wife could control her desire to die due to progesterone and PMDD.

I will not bore you with many details, but she and I went through hell for 7 years before her PMDD was eventually properly diagnosed and treated.

PMDD primarily manifests as a mental disorder. It appears as if the woman is depressed, or anxious, or suicidal, or any number of mental disorders or combination of mental disorders. My wife was treated with every depression, anxiety, and mood compound known to man—with no positive effect. There were numerous bad side effects though. After 4 years it was obvious that it was directly linked to her hormonal cycle. For about 2 weeks of the month she was perfectly normal. Then every month without fail she would wake up as a person I didn't recognize.

She was suicidal, depressed, and most of all had the worst anxiety imaginable. We told every physician we could tell that her symptoms were hormonal and directly linked to her cycle. They gave her more mood drugs and ignored the hormonal aspect.

Finally quite by accident she saw a reproductive endocrinologist doctor. This physician not only recognized PMDD, she knew how to treat it appropriately. Some women can be treated successfully with birth control pills or psychiatric drugs. Some women can't take those because of side effects or other reasons. For some women there are only 2 cures for PMDD, either a COMPLETE hysterectomy, or menopause.

To prove that it was PMDD, the reproductive endocrinologist prescribed a drug named Lupron. This is a once a month or once every 3 months injection. My wife was to take the injection for 6 months. Lupron shuts off the ovaries and hence mimics menopause or hysterectomy. After a couple of weeks on Lupron my wife was back. It was completely obvious that what we had been telling many doctors for years was true. She had PMDD. No amount of willpower or mood drugs was going to fix or control my wife's complete [and biological] inability to tolerate progesterone.

Progesterone intolerance made her crazy and out of control, and controlled our lives for 7 years.

After 4 months the side effects of Lupron became debilitating, so the doctor referred my wife for a complete hysterectomy. That's when the real hell began. From the time between when the Lupron wore off and before the surgery could be arranged, my wife's ovaries rebounded. They produced massive amounts of hormone in an attempt to bring her absent hormone levels back into range. It was so bad I truly believed my wife would be arrested and put in jail before we could get her into surgery. I could tell you stories...

She finally had surgery on 24 December 2014. Literally the next day my wife looked at me and said, "I feel a calmness I've not felt in many years."

She was cured and our life together saved. This is our story.

I would imagine that right now you are experiencing the worst PMDD has to offer. Please understand that your wife can't will her PMDD away. She cannot "just try harder." She cannot simply "pull herself up" and "get it done" at times you might feel she should. I COMPLETELY understand. I'm sure I was not the nicest husband all the time when we were going through our hell. There were times I could barely maintain my sanity.

The only things that got me through was my love for my wife and knowing it was not her fault or choice. If I ever thought she could have chosen to act differently and she just chose not to, I would have left. Thankfully I knew it was not her fault.

From someone who has been in your shoes, I ask you to please understand your wife needs you more than ever. I know how completely maddening and frustrating it is to deal with right now. Get her to a reproductive endocrinologist who understands PMDD. Make peace with the fact that she may need birth control, psychiatric medication, or even a complete hysterectomy, and do what you can to get her the necessary treatment.

If surgery is appropriate do not allow a doctor to leave either of her ovaries. Ovaries are the problem.

As an aside, both my wife and I had our DNA sequenced for genealogy purposes last year. After that we found a website that would analyze our DNA and give us health information. It shows my wife has a known genetic mutation that makes her unable to metabolize her own progesterone.

I didn't need a DNA test to know that, but it was a nice confirmation of what we had experienced. 

The Voices of PMDD, A Partner's Perspective on Seeking Treatment

I have to start with thanking everyone for reading my last post. It was great to know that my post hit a chord with so many.

Liana asked me an interesting question – does my partner know she suffers from PMDD?

The simple answer is yes, but I think she subconsciously would prefer to forget that PMDD-driven events happen. One of my greatest struggles has been the lack of empathy received during and after PMDD episodes – just part of the PMDD zone, I guess.

How black have I been?

I wrote the following during one of our PMDD episodes:

Do I care anymore?

I don’t like being hurt, but it is also pointless being in a relationship where I don’t get what I need. This can only lead to frustration. I am being made to feel worthless every month. As I’ve been warned, that comes with a substantial mental health cost. There is only so much you can put up with, and I think I am there now.

So, plan from here? I’m an exhausted man. I’ll just avoid her, and give myself space to think about if I can handle things any more. There is no point trying to directly reconcile, as she will just want to fight.

One of the pieces of feedback I received from my prior post was asking what we had done to try and treat the PMDD. I couldn’t fit everything into my prior post, so I thought I’d cover it here.

My partner has found it challenging to seek clinical help – to do so requires her to speak to outsiders regarding the details of her moods etc., that she knows are challenging (you are making me shove pills down my throat/they are making me fat/you are making me tell strangers about how crazy I am).
I completely understand...and yet, I definitely end up with a sense of hopelessness - if she had diabetes, there would be no doubt she'd be accepting of medical help. 
However, with my support and encouragement, we have certainly explored this space.

We first went down the SSRI route. I’ve no doubt this helped, but the side effects became frustrating for both of us.

We sought specialist assistance after that and some hormone type medications were prescribed, one of which was Cyproterone, but it was really a disaster. We only lasted a couple of months – the side effects were horrific. The most accurate description would be that she was in the PMDD zone for two solid months. It is almost impossible to describe how awful you end up feeling as a partner when she is constantly angry and you can't do anything right.  You end up suffering from sleep deprivation from wondering just what has gone so horribly wrong in your relationship. What makes it even worse is she has no ability to understand the impact her behavior is having on you - there is absolutely no empathy. 

I ended up as a burnt out mess.

Where are we today? We are retrying vitamin type supplements, as well as making diet changes. Caffeine seems to be a bit of a problem – one of the many tips we’ve picked up from the Rushing Woman’s Syndrome eBook, which describes the “biochemical and emotional effects of constantly being in a rush, and the health consequences that urgency elicits.ˮ

So things are quite calm at the moment – and my own blackness has gone. Until the next time.

Holiday Treats for Those with PMDD

Two Christmas treats I've uncovered this month...

The first is the best overall medical write up of PMDD I have ever read, and I do mean ever, starting with the first line where it defines PMDD as "a diagnosis to indicate serious premenstrual distress with associated deterioration." 

What I like about this write up is that it DOES NOT, anywhere, or anyplace, or at any time, refer to PMDD as a "more severe form of PMS," which PMDD most definitely is not.  You can have both PMS and PMDD at the same time, but they are not interchangeable, as so many articles and essays and websites either claim or imply, and they are not the same disorder, with one simply being a more severe version of the other.  The fact that so many PMDD resources say they are only muddies the already murky waters of PMDD, leaving everyone searching for help more confused than ever. 

So...I heartily recommend that you read this emedicine Medscape article and learn the latest about PMDD.  I'm sure there's information here you haven't read before.  And if you have just recently discovered you have PMDD, there is no better place to start your research than with this overview.

The second treat I've uncovered is this delightful free PDF entitled Let's go menstrual! by Miranda Gray. This 34-page PDF is a super easy read that helps us to understand our monthly changes, and provides a great way to enjoy and take pride in (rather than dread and loathe and curse) your menstrual cycle.  Ms. Gray breaks our cycles down to four seasons.  PMDD women would benefit the most from the section entitled The secrets of the Autumn and Winter phases.  

Seriously....this PDF "gets" what it's like for us, provides excellent tips and resources on how to cope, and finds a way to put a positive face on our periods and PMDD.

Couldn't we all use a little positivity going into 2014?

So let's welcome the new year and our new beginnings and successes with these two excellent resources for women with PMDD.

Is the Pill Really the Answer for Your PMDD?

Whether you're taking the Pill for contraception, or for your PMDD, you need to read this book.  If you can't afford the book, then read Holly's blog of the same name.  Make sure you are making an informed choice when you pop that pill in the morning for your PMDD.  

To quote author Laura Werschler, who wrote the foreword for Holly Grigg-Spall's book:

"Sweetening the Pill explores and challenges the ways in which the pill and other drug-based contraceptives damage women’s health, threaten our autonomy and thwart body literacy. What we don’t know about our bodies helps pharmaceutical companies “sell” their contraceptive drugs, and keeps us “addicted” to them... Prescribing the pill, or other forms of hormonal contraception, has become, in the minds of most health-care providers, the “standard of care” for being a girl. It is all too common to subjugate a girl’s menstrual cycle to synthetic hormones that superficially “regulate,” but actually suspend the maturation of her reproductive system. And for many girls, the use of hormonal contraception continues well into their 20s, without awareness of what might be or has been sacrificed."

This sacrifice can include, but is not limited to, your mental and emotional stability, both of which are defining symptoms of your PMDD.

For more information, go here, or here.  Or even here.  Learn about what you are putting into your body.  You will be surprised at how many questions these resources will be able to answer.

Continuing the Conversation about Depo-Provera

In keeping with my latest posts on progesterone, progestins, and birth control, I 'm posting this link to a post about Depo-Provera.  I know many of you have had negative experiences with the shots and this may help others to think twice about getting them for your PMDD.  There's a lot of good information on this site overall regarding all things menstrual, so it's well worth your time to look around once you get there. 

Enjoy, and may you be having a PMDD-free day.