Guest Post, Cat's Story: Living with PMDD

I have suffered with Premenstrual Dysphoric Disorder (PMDD) since I was 13, but I was only diagnosed at 27. For over 10 years I had been diagnosed as depressed and in and out of community mental health departments. After stopping the Pill and having a baby at age 21, my hormones went crazy and I suffered pre and post natal depression. In the years that followed I began noticing a pattern to my moods and depression. At times, I thought I really was severely mentally ill. I always had PMS, but I realised  my worst times happened when I was due on my period. My PMS was so severe  it had begun to take over my life, wreck relationships, ruin jobs, studying, and caused me so much emotional pain I often found myself considering suicide. I would become housebound, with no social life or friends and fearful of ever making an appointment because I could never guarantee how I would be feeling.

It was only my persistence and researching that made me realise I did in fact have a mood disorder and not straightforward depression. I Googled 'mood disorders' instead of depression and discovered PMDD – Premenstrual Dysphoric Disorder. I read the only book available at that time, and began to track my moods using a chart from the book. I found a GP willing to listen, took in printed information and my charts and got the correct diagnosis of Premenstrual Dysphoric Disorder. Coming to terms with what that meant took many years, and sometimes I still struggle.

PMS is one thing, many women suffer with moodiness, anger, irritability at pre-menstruation, but my PMDD threatened to destroy everything. As a mother, I felt I wasn't well enough to look after my children, I have been unable to work and feel really separated from the rest of the world. Only 3-8% of women suffer with PMDD, the rest get through each month without disaster. It is very difficult to find people to talk to who understand what I’m experiencing when PMDD is so rare, and when menstrual problems are often seen as something to joke about or ridicule. I have often dealt with comments like 'pull yourself together' and 'get a grip', and even people denying PMDD exists.

PMDD is distinguishable by the dysphoria that is experienced. Feelings of being completely overwhelmed, spiralling thoughts, outrage, anger, frustration, anxiety and suicidal ideation coupled with the physical symptoms, which can include, bloating, IBS, tender breasts, cramps, lower back pain, lethargy, and sleep and appetite changes. I am sensitive to the changes in hormones during my cycle, and I also experience a few days of unstable moods and physical symptoms during ovulation. My PMDD does not occur once a month but twice a month, leaving on average 10-14 days of feeling like me, and the rest being spent coping with symptoms. This will continue until menopause.

I am now 34 and have tried every medication offered to me. I have discovered I am very sensitive to any type of hormone and cannot tolerate the Pill or IUD. I spent a total of 5 years on anti-depressants, which never really worked for me. They took the edge off, but didn't stop the extreme lows and outbursts. I have seen psychiatrists and gynaecologists. At one point, I went through hormone treatment to stop all my hormones and put me into a chemical menopause. This is often a route that works for PMDD sufferers, and many go on to have hysterectomies. Unfortunately, this option did not work for me, and the treatment made me very ill.

I have found that counselling has helped, along with mind techniques such as CBT, NLP and meditation. Finding support is essential. Being able to talk through the irrational thoughts can usually avert disaster. Keeping busy is also a good way to keep the mind focused, so I draw, create, paint, write and bake lots!

I am now medication free for the first time in my life. I have had to learn my cycle and I now plan things around it. I avoid busy social situations when I know it will be too much for me. Eating healthily, regular exercise and avoiding stress has also helped improve my symptoms. Making sure I continue to communicate with loved ones and work through problems, finding strength to leave the house even when I don't want to and being open and outspoken about my disorder all contribute to life feeling easier and less stressful and traumatic. Fitting into society and getting a regular job is a whole other problem. After all, who would employ someone who can only function and deal with stressful situations for 10-14 days out of every month? I focus on my children and being the best mother I can be, my writing, art, and getting through each month without trauma. 

Living with PMDD is very challenging, but I am trying to make the best of my life, for me and my children. There is always hope, the negative feelings and dysphoria will always pass. Life is a rollercoaster but as someone once said to me – you're a long time dead. Women need to speak out and stop being ashamed of suffering from PMS/PMDD. Every voice helps change the way people think and I find talking and being honest is always the best option.

You can find out more by reading my PMDD blog and check out my artwork.

Scientific Awareness of PMDD is not the Problem

Almost daily I hear someone mention how we need to raise awareness of PMDD, so that more studies of this debilitating disorder will be done, and someone can finally unlock the secret of what causes PMDD and how to successfully treat it.

So one day last August, a week before my most recent brain surgery, I was apparently looking for some challenging reading material when I got out of the hospital, (thinking positive, I imagine) so I spent an hour and a half clicking on links and printing out various scientific abstracts and studies I could find on PMDD.

In just that small segment of time, I found nearly 50 studies on PMDD, which broke down as follows:

2013 - 19

2009-2012 - 18

2006 - 2008 -  I already have most of these in my files, so did not print them out again

2001-2005 - 10

I am sure there have been countless more studies done in the past 14 years, but this was a random sampling of those I might not already have read, and I also chose not to print out many that were over 7 years old, as so much information about PMDD has changed since 2007. 

Of the 2001-2005 studies, I printed only those that might be of use in my research.  A list of titles appears below.  And yes, I do intend to read each study listed, and share with you in plain language anything that seems relevant.  But first I want to point out that in the scientific community, the problem is not awareness.  Scientists are well aware of PMDD and for what looks like mixed reasons.   An analysis of what those reasons might be will be the subject of a future post. 

For now I just want to repeat that awareness on a scientific level is not the problem.  Awareness in the medical community—short of misleading advertisements by drug companies—and awareness in our friends and families is.  Hopefully blogs like mine will help to rectify that situation for you and your loved ones. 

In the meantime, here is a list of the studies on PMDD I uncovered in less than two hours of searching.  If you think the list is dry reading, imagine reading the studies themselves :).  But like I said, it keeps my brain sharp. Not to mention I'm a total research geek and love it.

If you wish to read any of these studies yourself, you can Google the name provided.  I typed the titles exactly.   Just retype it yourself, or cut and paste the title into your browser.  These can all be found on the PubMed.gov site, which is part of the U.S.  National Library of Medicine, and the National Institutes of Health.  Many of them are abstracts, but you *can* find the full studies if you look hard enough.  Update: the first comment below tells you exactly how you can get copies of the full studies.

Enjoy!

2013

Comorbid bipolar disorder and PMDD: real patients, unanswered questions

Elevated gray matter volume of the emotional cerebellum in women with PMDD

Allopregnanolone serum concentrations and diurnal cortisol secretion in women with PMDD

Examination of premenstrual symptoms as a risk factor for depression in postpartum women

Luteal serum BDNF and HSP70 levels in women with PMDD

PMS and PMDD among Jordanian women

Circulating insulin and leptin in women with and without PMDD in the menstrual cycle

Abnormalities of dorsolateral prefrontal function in women with PMDD; a multimodal neuroimaging study

Lamotrigine augmentation in PMDD : a case report 

Depressive mood and frontal alpha asymmetry during the luteal phase in PMDD

PMDD and severe premenstrual syndrome in adolescents

Selective serotonin reuptake inhibitors for PMS

Premenstrual disorders and rumination

Anger in women with PMDD: Its relations with PMDD and sociodemographic and clinical variables

Non contraceptive benefits of oral hormonal contraceptives

Premenstrual symptoms and posttraumatic stress disorder in Japanese high school students 9 months 

after the great East-Japan earthquake

Personal history of major depression may put women at risk for premenstrual dysphoric symptomatology

A review of treatment and management modalities for PMDD

Biopsychosocial aspects of premenstrual syndrome and premenstrual dysphoric disorder

2012

Pilot investigation of the circadian plasma melatonin rhythm across the menstrual cycle in a small group of women with PMDD

Bipolar disorder and PMS or PMDD comorbidity: a systemic review

Survey of premenstrual symptom severity and impairment in Korean adolescents; PMDD subthreshold PMDD and PMS

Intercountry assessment of the impact of severe PMDD on work and daily activities

2011

Work stress, PMS and PMDD are there any associations?

Lifetime discrimination associated with greater likelihood of PMDD

Posttraumatic stress disorder and trauma characteristics of PMDD

Reduced Phase-Advance of Plasma Melatonin after bright morning lithe in the luteal, but not follicular menstrual cycle phase in PMDD: An extended study

Exposure to American culture is associated with PMDD among ethnic minority women

Health advantage for black women: patterns in PMDD

2010

Histories of major depression and PMDD: evidence for phenotypic differences

Neuroticism related personality traits are related to symptom severity in patients with PMDD and to the serotonin transporter gene-linked polymorphism 5HTTPLPR

Predicting response to leuprolide of women with PMDD by daily mood rating dynamics

Estrogen receptor alpha (ESR-1) association with psychological traits in women with PMDD and controls

Increased sensitivity to light-induced melatonin suppression in PMDD

Prefrontal brain asymmetry and PMDD symptomatology

Explorative evaluation of the impact of severe PMDD on work absenteeism and productivity

2009

Safety, efficacy, actions and patient acceptability of (Yaz) contraceptive pills in the treatment of PMDD

2005

Lack of beneficial effects of clonidine in the treatment of PMDD: results of a double blind, randomized study
Histories of sexual abuse are associated with differential effects of clonidine on autonomic function in women wit PMDD

2004

Historic sexual abuse and current thyroid axis profiles in women with PMDD

2003

The prevalence, impairment, impact and burden of PMDD

Biological correlates of abuse in women with PMDD and healthy controls

2002

Prevalence, incidence and stability of PMDD in the community

Prevalence and predictors of PMDD in older premenopausal women. The Harvard Study of Moods and Cycles

2001

Characteristics of women with PMDD who did or did not report a history of depression: a preliminary report from the Harvard Study of Moods and Cycles

Allopregnanolone levels and reactivity to mental stress in PMDD

Women and Insanity -- Pioneers with PMDD?

A little something extra today in honor of Halloween. PMDD is not a new condition. It's been around in one form or another since at least the time of Hippocrates. Back then it, and just about any other condition relating to women's hormones, was called hysteria, hystera being the Greek name for uterus.

This is why anyone with a uterus is considered hysterical at times, and why they call the removal of your uterus a hysterectomy.

But I digress. PMDD is not, as some believe, a disorder made up by the drug companies to sell more drugs. It's a condition happily exploited by drug and supplement companies, to be sure, and even some doctors (more on this in a future post), but it's far from a made up condition. You know it, and I know it, and anyone who has ever lived with a woman who has PMDD knows it.

That doesn't mean we're not accountable for our actions. PMDD is an explanation--not an excuse, or free pass--for bad behavior. We owe it to ourselves to understand the condition (and therefore ourselves) as fully as we can, and to then promote a positive awareness of PMDD everywhere we go. It's only by focusing on the positive--what works, what helps, what provides solid help and answers--and not the negative--the fear, the stereotyping, the ridicule--that we will get mainstream medicine to pay any genuine attention to PMDD and other women's health issues.

That said, today I thought I'd offer up a special post on women and insanity, to let us know where we might have ended up, had we been born in another time.

Please welcome my guest blogger, Wild Rose Press author Loretta Rogers.

Because divorce was a rarity during the pioneer/frontier days, men devised other ways to get rid of unwanted wives and children, and that was by declaring them insane and placing this unwanted loved one in an insane asylum. Actually these early asylums were in reality prisons and not medical centers. These institutions were filthy, dark places where people were treated more like animals than human beings. The asylums usually provided only the basic necessities of life. Food was poor, cleanliness was not stressed and the rooms were often very cold. Diseases were quick to spread throughout the asylum.

Some of the reasons women were institutionalized are unbelievable. In the early 1800’s wives and daughters were often committed for not being obedient enough to their husbands or fathers. You’ve heard the term, “children are to be seen and not heard.” This applied to wives as well. If a woman spoke out and went against the “norm” she could be committed.

With no birth control, it wasn’t unusual for a woman to give birth to another baby while still nursing her last child. And a brood of six to twelve children wasn’t unusual either. With her body no longer firm and supple, her energy level somewhere between zero and double zero, and with the daily routine of cooking, cleaning, plowing, and all the other demands, a woman was run ragged. It’s no wonder she grew old long before her time.

All the husband and/or father had to do was simply write the word “lunacy” on the admission form. Lunacy was an acceptable reason for divorce. The woman’s husband would declare her insane, put her in the asylum and then file for the divorce. A few months later, his marriage records to a younger bride usually showed up.

Other reasons to be “put away”, were depression, alcoholism, just being a little different from the norm, and even going through menopause. Doctors just didn’t know how to deal with mental issues and the result was to put their patients in the asylum. These women were locked up and forgotten by their loved ones. The fathers/husbands often forbid the family members to visit. It was as if the wife or daughter had simply died. Most of these women did stay at the insane asylum until their death.

If a father had no sons, but didn’t want his daughter to inherit his fortune or worldly goods, he could have her declared insane, institutionalized, and leave his money to a favorite nephew or his ranch to a ranch hand he considered as a son. If a man’s wife had died in child birth and he couldn’t find a woman to wed who was willing to become a stepmother to his large brood, or if he couldn’t marry off any of his eligible daughters, he simply declared them as lunatics and placed them in an asylum. Sometimes daughters were committed for unwanted pregnancies. Other children were committed for being disobedient or for illnesses such as Down’s Syndrome or Autism. Being born deaf or mute, retarded or physically disfigured was another reason a child might be committed.

Oftentimes, the husband might tell others that his wife or child had died. If a newspaper office was available, he might even have an obituary printed. Yet the person was very much alive at the asylum. While it was rare for a sane person to be released from an asylum, it did happen. Imagine what it was like for this woman. Having been declared dead, she had no identity.

Some of these asylums were built next to, or part of, the prison system. This was to help cut back costs of care, food and facilities. Rape was prevalent in asylums. Because women had been declared insane, it was deemed they had no powers of reasoning, no feelings or emotions. In other words, they were considered walking zombies. Because of this deranged thinking, (no pun intended) prisoners and even asylum employees used the women for their own pleasures.

If you are into genealogy and have run into a brick wall trying to locate a female relative, the US census has a place on some of their census, example 1850, that had a place to mark if deaf, dumb or insane. The probate section may carry Lunacy Record Books at the county courthouses. Some Wills will declare if someone is insane or having lunacy. If someone seems to have disappeared, they may have been “sent away.”

Therefore, when we refer to the ‘good old’ days, we might remember these women and their lives, and be thankful that they paved the way for us.

Loretta C. Rogers, Isabelle and the Outlaw.