Thursday, 8 November 2018

A personal story of experiencing and being treated for PMDD (guest post)

Have you heard of Pre Menstrual Dysphoric Disorder (PMDD)? No, I hadn't either until recently when my friend Charlotte mentioned that she had it. This clinical condition can be called "severe PMS", but as you will read below it is so much more than that. I asked Charlotte if she would write a guest post to help raise awareness and to help other women who may be suffering from it, but not realise that is what it is. Here she talks about the challenges in identifying PMDD, the symptoms, getting help and the medical treatment options.

A bed in a dark room home of PMDD sufferer

Here is Charlotte's story about experiencing Pre Menstrual Dysphoric Disorder (severe PMS) and it's treatment:


Several months ago I was asked if I would write a blog piece about PMDD. I then became very unwell, because of PMDD, took 2 and a half months off work, and was unable to write the blog piece on PMDD, because of my PMDD.

Sigh.

A lot of the time when I post links to PMDD articles online people point out that the term is never described, that they don’t know what it is. So, that’s where I’m going to start:

"Pre Menstrual Dysphoric Disorder is the clinical term used to describe a woman’s severe negative cognitive and emotional response to the natural rise and fall of the female reproductive hormones: oestrogen and progesterone. "
source: www.IAPMD.com

Symptoms of PMDD can include anxiety, depression, sadness, hopelessness, anger, irritability, noise sensitivity, feeling overwhelmed, brain fog/confusion, loss of interest in daily activities, and suicidal thoughts, actions or ideation.

The UK classification of Pre-Menstrual Dysphoric Disorder is still “severe PMS”. That in itself is something I find disempowering, although I’m aware that a lot of that is a result of how the term has been used and seen in society. PMS is a term that traditionally conjures inconveniences and irrationalities such as minor pain, crying and moodiness. PMS is the butt of jokes, as are “hysterical” women, PMS is one of the myriad reasons that a traditionally put-upon husband spends well-deserved time in the pub with his mates. I’d like to say that time, communication and understanding have changed this attitude, but then I’d like to say a lot of things but that doesn’t make them true.

In pointing out gender stereotypes and outdated husband/wife tropes, I’m not trying to perpetuate anger, or widen the gap of understanding. My husband is a great human being, he is interested in my health, willing to learn about the situation and help in any way that he can, and he will not be the only one out there by a long stretch. Also, and this is perhaps the most important thing I can write here, not all women menstruate, and women are not the only ones who menstruate. Let’s say that louder for those in the back:

Not all women menstruate, and women are not the only ones who menstruate.

So what is my point? I’m trying to highlight what people who menstruate are up against. This is wholeheartedly my experience of opinions on PMS, and my journey in trying to get PMDD taken seriously by my general acquaintance and the medical profession. I apologise in advance if this is a cis-normative post, it is not intended to be exclusionary it is simply a post about my experience in this field, and my experience is that of a cis-het woman.

The experience of living with PMDD

PMDD is not just about PMS, severe or otherwise. PMDD is not just cramps and crying jags. PMDD is dysphoria, plain and simple. It is confusion – the frustration of trying to form sentences, of knowing what you want to say but losing words along the way in the fog of your brain. It is the magnification of your external environment – the fact that loud noises make you irrationally angry, or scared to the point of wanting to run away, in short, fight or flight. PMDD is struggling to make sense of your own feelings, likes, dislikes, opinions, and the things around you that normally make up your everyday life but now make no sense at all. PMDD is anxiety – feeling frightened of other people, of yourself, of being alone, of leaving the house, of interacting with anyone. It is the overwhelming fear of failing spectacularly at your job (if you’re lucky enough to still have one) because you can’t make sense of any of it. PMDD is depression – knowing that, whatever you try, this will happen every month, and there is nothing you can do to stop it. At my lowest ebb I was experiencing symptoms for approximately 1.5-2 weeks out of each month. I would have just finished picking myself up from the last bout, when I realised that I only had a week at best before it would start all over again. Each time this happened the “normal” time would be duller and I would feel darker and more lifeless. I felt exhausted, drained, at the end of my ability to fight, and I seriously started to consider ending it all just to make this horrific cycle STOP.

Let’s take a pause here to reflect on the fact that suicidal thoughts, ideation and actions are a significant symptom of PMDD. 15% of cis-women sufferers report having acted on these feelings – the number is even higher for transgender sufferers. I do not mention feeling suicidal lightly, because it is not something to be taken lightly. Crying my heart out two months ago to a mental health professional about how I had started to make a plan to take my own life while my husband sat beside me hearing it all for the first time, is one of the most harrowing experiences of my adult life. I was lucky to have support, to be believed, to not be alone, not everyone has those luxuries.

PMDD is a relentless nightmare that infects your home, your family, your relationship, your work, your friendships, your sleep, and every other single part of your life. The ultimate kicker though, the thing that makes me viscerally angry, is the fact that this condition is one that most people have never heard of. There has been so little research and so little funding for a condition that affects 5-10% of menstruators of reproductive age. As a result of this lack of knowledge you will find that most GPs have never heard of the condition. Sufferers will likely be told they have depression, be given anti-depressant medication, sometimes anti-anxiety medication, and possibly CBT if it is available. If the link between the sufferer’s symptoms and their cycle is ever recognised then they may be given options such as different types of contraceptive pill. This is rarely, if ever, enough.

Treatment options begin with the contraceptive pill, can progress to SSRIs and/or HRT, and the last line of defence is chemical or surgical menopause. For more information about treatment options, please visit IAPMD.com which is the very best source of information on PMDD that I’ve ever found.

After 21 years of menstruating I finally noticed the link between my symptoms and my cycle, and told my GP, loudly and firmly that I thought this was “a thing”. As I live in London I was referred to the Chelsea and Westminster Hospital’s gynaecology department, a fact for which I will be forever grateful. In this clinic they discussed (severe PMS) as a genuine condition that could be treated and managed. I saw my first rays of hope.

I was given HRT – oestrogen patches that I change twice a week, and progesterone pills that I take for 10 days prior to my period. I didn’t get on with the progesterone pills, they gave me a terrible headache that lasted 2 full weeks before I gave up on them, and the treatment. Because I’m a genius and obviously know what’s best for myself.

*Slow clap*.

When I returned to the GP several months later experiencing even worse difficulty they read the gynaecologist’s notes and put me back on HRT. However, each GP expressed several times that they did not know anything about PMS and had never heard of HRT being used for anything other than menopause. The 3 GPs I saw at my surgery all asked me what dosage of everything I should be on. Please, say it with me: HOW THE F##K WOULD I KNOW?! So they guessed. They also referred me to a gynaecologist at a different hospital telling him that I probably needed an oophorectomy (removal of the ovaries). This is actually a very effective treatment and, as you’ll see above, one of the recommended treatment steps if no other options work. However, it would mean that I would start menopause at the age of 36. Menopause comes with several risks. One of which is that your sex-drive will take a nosedive off a cliff. The others are worse, and include increased risk of osteoporosis, stroke, heart disease, blood clots, breast cancer, type 2 diabetes, and dementia. I genuinely thought this was what I was facing, at the age of 36.

The doctor I saw was an elderly man who told me that if I lost weight then everything in my life would suddenly become magical, and that a miraculous unicorn sh#tting rainbows would dance down a sunbeam and remove my PMDD! I quickly squashed that daydream by pointing out that at the point in my life when I was at my very slimmest I STILL had PMDD. And I rolled my eyes. A lot. And I lost all faith in him. Next we discussed whether or not I had children – no – did I want them – no – did my husband want them – WTF? He advised that I go home and discuss this properly with my husband to make sure that he was truly happy not to have children before we talked any further about surgery. In the meantime I should just carry on doing exactly what I was doing, and taking the same meds, as it might work if I give it long enough. Spoiler alert – the only children we’ve each ever wanted are furry, four-legged, and are cats. Also, the choice as to what I have done to my body in order to alleviate a serious medical condition is mine and mine alone. As my husband would (and did) immediately agree. The thing to note here is that hysterectomies and oophorectomies are rarely given for this exact reason. Heaven forbid we take away a woman’s primary function on earth in order to ease her own mental and physical health, and heaven forbid we should ever believe her when she says she doesn’t want children.

Strangely enough, I never returned to Dr Draconian, and demanded instead to be referred the Chelsea & Westminster. In the meantime my GP proceeded to repeatedly change my progesterone telling me that it was the best guess they could make. I got progressively worse until the aforementioned 2 weeks of symptoms each month, resulting in presentation at the local mental health crisis care team, and horrific conversation in the presence of my husband.

When I finally saw the specialist I was told that the progesterone should never have been changed as that was making me progressively worse, the oestrogen should have been upped instead. It was as simple as that. So they did that, and they changed my anti-depressants, and I feel so much better I could cry.

Receiving effective treatment for PMDD after a long struggle

Everyone needs to know what this condition is, what it does, and what the repercussions of it are. Boys need to be taught about female reproductive health alongside girls at school. Please, don’t split up the boys when you give the girls the period talk in primary school. Please make sure that everyone knows just as much about everyone else’s workings as their own. This is how you end stigmatising, trivialising and belittling of “women’s troubles”, and this is how those aforementioned troubles begin to qualify for exploration, funding and research. Incidentally, this is also how you ensure that more men are prepared to seek medical help and advice for their own problems. If you normalise conversations about health, and take down the ridiculous divide you stop taboo topics leading to avoidable fatalities.

DISCLAIMER: I’m not an expert, I am one person with PMDD and I’m still figuring out. I’m not even an expert on my own PMDD. Also, the stats I’ve given were taken from www.IAPMD.com but can only ever be thought of as a best estimation, as so many people who menstruate don’t even know that they have this condition, so the numbers of sufferers cannot yet truly be known.
SHARE:

2 comments

  1. This was so interesting to read. I really struggle each month around the time of my period, especially since struggling with PND and anxiety after the birth of my last child. I am particularly sensitive to hormones, I can’t take anything with oestrogen in anymore as I had a hemiplegic migraine which almost resulted in a stroke. The mini pill (progesterone only) sent my periods haywire and made me feel ‘weird’...I didn’t realise until I stopped taking the pill and felt less foggy and more normal. It’s hard to know what the problem can be when you have young children, a mental health issue and are severely sleep deprived. Well done to your friend for opening up about this and I totally agree with boys being in during the period talks x

    ReplyDelete
  2. This is such an important piece. Thank you to the contributor for sharing. As she says there is very little understanding out there and by sharing our experiences it helps other people make sense of their options and get the best support.

    ReplyDelete

BLOGGER TEMPLATE MADE BY pipdig