This is not the end.

It's been a while since I've written a blog, and there are many reasons for this. Life stuff takes over sometimes and attention needs to be elsewhere, but alongside this, I have been coming to some very different conclusions about my own PMDD. I have mentioned before about how hard it is to explain and express all the things that have changed within me since I started this blog, and I have felt a real inner conflict for many months now.

Some of the things I have learned means my view of PMDD has changed massively. When I started this blog, and began sharing my story and understandings, I was in a dark place. This was due to many things alongside PMDD. PMDD was not solely responsible for my life feeling too hard to bear. I can look back and see that now, but when you are caught up in the daily drama, it's easy to feel like PMDD is to blame for all of life's shortcomings. In 5 years, my life has changed dramatically, and in those years I have found friends, fellow sufferers and other people like me.

When I say 'other people like me' I mean those who also have PMDD, but are choosing to work spiritually with it rather than continue down the route of believing that we need to be 'fixed' or that there is something inherently wrong with us.

I no longer believe there is anything wrong with me. The past 5 years have taken me to the depths of despair, but they have also been so valuable. PMDD has actually been the most powerful guide I could have had. I know many readers may think I've lost the plot, or that maybe, I could never have really suffered with PMDD to begin with, and that's fine. You can judge me however you like.

I come across a lot of women through the PMDD community page, and many want a 'cure'. Many want a magic tablet to make everything better. They want labels and recognition for that label. PMDD is just a label. It's the label doctors give to a woman who is sensitive to the hormonal changes in the body, and when those hormonal changes create a string of infinite symptoms that becomes life destroying. Some people want it to be a mental disorder, some want it to be an endocrine disorder and some believe it originates in the gut. I shared an article recently about PMDD being labelled a mental disorder, and someone commented saying that if it was all in the mind then how did it a hysterectomy cure her? Thing is, the brain controls everything, it controls the production of hormones, and it is affected by hormones. Hysterectomy is the ultimate off switch. The brain no longer needs to tell the body to make those hormones. Having a hysterectomy may be the most successful way of treating PMDD to date, but it is an extreme measure to take, especially if you want children and haven't been able to conceive. So it may be effective, but is it the best way? Swapping PMDD for early menopause has never been something I have wanted to do. I know a few women who have had their PMDD 'cured' by means of hysterectomy, some have had other problems occur, some haven't, but on the most part, I hear many women say they are glad to have had it done, and I for one am happy that they are no longer suffering and have a chance at a new life without PMDD. There are many different views on the causes of PMDD. The only I would like to say for certain is it is a imbalance in the body and mind which can have devastating effects.

We all need more research to be done. Its almost 2014 and we still don't fully understand the workings of the female body, we don't know why hormones create such illusions and dysphoria in the brain. We don't know the root cause of PMDD (if there is one). There is research being done, all be it a few small studies here and there, but still not enough is known. The doctors don't understand it, and there are very few specialists. I'd like to point out that we are talking about the medical realm right now, so when I say doctors and specialists, I mean the people conventionally trained in conventional medicine. Doctors, more often than not, want to help, but they are in the dark too. They have drugs that are unlicensed for PMDD but treat conditions similar to PMDD, so that's what we get. They try, but always remember that the doctors are just ONE aspect or avenue to healing, and often, they are working with pharmaceutical companies pushing their products, getting people reliant on yet another expensive drug. They will look at PMDD ONE way, and often dismiss others.

Turning my back on medication was the best thing I ever did. Saying away from the health services unless absolutely necessary. This is my story, my reality, I am not suggesting anyone do the same. This is what's ended up silencing me so often. How do I share my healing and this amazing transition when it is so personal to me?

I think that people have their own realities and most tend to stay within certain ideals. If it is your belief that taking a pill can cure you, then maybe you will find peace or ways to manage PMDD by using medication. If your belief is that removing your womb will cure the problem then you are more likely to go for that option when your symptoms are out of control. If you believe that talking therapy and mind techniques such as CBT is the way then you may find that successful for you. You also have to factor in what 'pay offs' there are with each belief. Medication will most likely come with side effects. Surgery might mean HRT. Talking therapies may not help physical symptoms.

My belief is that my body can create illness. That the mind and body are closely interlinked and often, an illness in the body is connected to, maybe even created by the brain. If my dis-ease in the body is stemming from dis-ease in the brain then surely, healing the brain can heal the body? By healing the brain, or re-training the brain, we can break out of the cyclical patterns that PMDD can put us in. My life 5 years ago was chaotic (it still is.. but in a good way nowadays) There were many things going on that would make the sanest and strongest of women cry and feel like life wasn't worth living.

PMDD almost responds to how well you are living your life. For me, being really unwell is a measure of the stress in my life at that moment. I've spent 3 years observing my moods and monthly cycles. I am not free of mood swings, manic craziness and deep depression, but I am free of almost all of the negative self beliefs I held about myself, the extra nastiness that clings onto you after an 'episode'. I don't spend days beating myself up, telling myself how shit I am, convincing myself I am not loved or wanted like I used to. I get up, take a deep breath and get on with life again. I've manage to reduce the drama of PMDD. I'm learning how to communicate better, how to avert disaster by using the right words. Things that seem so simple, yet these simple things really have changed my life.

5 years ago I didn't really have any hopes for the future, I didn't know where I was going, what I wanted. Two young children and a mood disorder that seemed to ruin everything. I hated life. I guess it's something that all young mums go through at some point. The feeling like you'll never have a career, that the things you are interested in are at the bottom of the pile of importance. I was also in a terrible relationship and hadn't dealt with all my childhood stuff. Add PMDD symptoms at their worst and BAM, there I was. Now, it seems logical looking back, that my symptoms were at their worst because of the state my life was in, but you don't know when your are in that moment that this is the worst moment you'll ever have, or that things will even change. You get locked into a belief that things will stay the same forever, but that is the only thing of absolute certainty, everything changes, nothing stays the same.

I now live day to day with my 'PMDD'. On the most part I am fine, although I have noticed I seem to have 2 almighty crashes a year around spring and autumn, which corresponds to pre-ovulation (spring) and pre-menstruation (autumn). The only other times I crash is when life gets really stressful. Stress is relative. What I can cope with is different to what another can cope with. Life has been tough this year and I have had to test my methods against some really challenging situations. Thankfully, I came through it all, I survived, and any women PMDD or not, would have felt the pressure. When the darkness or craziness hits, I hold on. I know it will pass, I use the things I know will help me.

All this change however does mean saying goodbye to certain things. Blogging about my PMDD helped through the worst times. Writing articles and researching helped develop my understanding and open my mind to new ideas. Meeting so many lovely women through the blog and on Facebook has been the best return for the hours spent.

I now feel like I am well enough to start building a career, and wheels have been in motion for a while. PMDD and depression can mean you spend long periods of time looking at your life and working out what it is you want to do. I realised that I want my life to be about creating, about art, about teaching and living a mindful life. I don't want to spend my hours anymore focusing on PMDD in a way that pleases the masses. I don't want to have to try and explain myself to people who don't really care.
I worry that I will upset people, because my views have changed. I started a campaign to get PMDD recognised, because for that medical world, it NEEDS to be, but at the same time, I no longer want to carry the label. I use the label for society's sake, to give them something they can understand, but my inner belief is not that I have some terrible disorder that I have no control over. I have something that not many people can begin to comprehend. I have something that can actually be very useful to me.

Running the groups on FB and interacting with people on the community page can be really stressful. It takes my time and focus away from the positive things in my life, so these days I tend to limit my participation. I often feel bad for this, but I have to let go and move on. I find few people ready to even contemplate the possibility that they have the power to control and manage PMDD without meds, anything that I post that isn't mainstream gets jumped on, and my motives questioned. I have only ever been a Sharer Of Information! I share more things I have no personal interest in than things that I believe in... and this is where things have to change. I can't even stand the name of this blog anymore! MY PMDD! HA! I even claimed it as mine... well it isn't any longer.

I have to find my voice within the alternative PMDD realm and find the others like me. I have plans, but there is still some way to go, and my main priority is my art, spirituality and teaching. Thats what I want to spend my time on. I can no longer spend time on projects that feel like I'm banging my head against a brick wall. For now, I am in control and that means we go full steam ahead on projects. My cyclical energy still means I have downtime every month, but y'know, I think I'm healthier for it, and there are certainly less battles. I will write here occasionally, but the PMDD Awareness site is going to be taken down. I did it because I could, and because I thought it was needed and helpful, but I cannot maintain it and promote it. Anything I do from now on with regard to PMDD is gonna be a reflection of my beliefs and experiences, for other women out there who want to try managing their moods in an alternative way. This blog will stay as is and I may update from time to time to let you know about any new projects I may have in the future, but essentially, this is the end of an era.

I've said it before and I'll say it again.. Thank you for all the support you've all given me over the years, I wouldn't be here now if it weren't for each and every interaction I ever had through this blog and Facebook.

As always... thanks for reading.

New PMDD Website now LIVE!

Finally!

Six months in the creation (slow and steady wins the race) and here it is!

www.pmddawareness.co.uk

Go check it out!

Where I am with things now...

The following is part of a message I wrote to my new UK support group...  I thought I'd share here too.

When I started the support groups I was very active in all of them.  I was still struggling with my PMDD and needed the valuable words of support and advice that you can find in the group, however, life moves on and my struggles are far more under my control and I am beginning to focus my time on other things.  What this means is although I am the group owner, I may not be in here and posting all the time.  I will always respond to anything I'm tagged in, but I unfortunately don't have the time I used to have to dedicate to the groups.  There was one point in my life when my PMDD groups were the first thing I checked in the morning and the last thing at night!  I have always seen the need to create a UK group, so this, I think, will be the last group I set up!

I have been writing my blog for about 6 years and writing has my saviour so many times.  Go back a few years and you can read my posts from when I was at my worst, right up to now where I tend to focus my writing into creating more positive articles and blogs.  It has proved quite popular and I thank the Goddess for ever comment that keeps me writing.  I get lots of emails and inbox messages for people looking for help.  It would be impossible for me to help and support everyone, but what I can do is create a space where you can do it for each other.

I have lived with this since I was 13, and have tried many medications, birth controls, IUD's etc but the only thing that worked for me was changing the way I saw my period. I began working with the natural ups and downs.  I learned to deal better with stress and I make sure I avoid stressful situations.  Looking after myself, honouring what having a powerful connection to the cycle means has helped turn things around for me. I do not believe in medications.  I do not believe this incurable.  I see PMDD as a severe imbalance within the system, with many factors contributing to the overall list of symptoms.  It's a whole mix up of low serotonin, adrenal fatigue, excess hormones or lack of, sensitivity to the hormonal changes, not enough healthy food and exercise, lack of sleep, traumatic situations, childhood baggage, unhealthy relationships, being over worked, and negative though patterns etc etc... possibly mixed up with some depression and other health conditions you may have, and possibly brought on by some kind of reaction to hormonal medication, pregnancy, or underlying problem in the sex organs.

I now manage my PMDD and life so that I rarely suffer the severe symptoms.  I'm not free of it, but neither would I want to be.  PMDD makes me look at my life and the things I am doing.  It stops me from taking on more than I can handle.  It makes me streamline my friendships so that I only have people around me who I trust and who understand me.  It has led me to become strong and there is nothing better than PMDD to teach you how to 'not sweat the small stuff'.  I have achieved this through stopping all meds and birth control, getting lots of counseling, moving on from bad relationships and stressful friendships, and becoming more aware of my cycle.  I use spiritual views and ideas to get me through, concepts about the menstrual cycle that I connected with in a spiritual way.  It's made me be more honest and open with those around me.  It makes me ask for help when I need it. 

My menstrual cycle has become a source of inspiration for me and I no longer fear it.  I know the cycle.  I know MY cycle.  I rest when I need to, I work hard when I can.  I see my life, much like a circus act.  I'm the plate spinner.  I get one going, then my mood changes, so I set another one spinning... I keep going till there are things to do no matter what mood I'm in, so I focus on those things in turn as my mood changes.  Sometimes I drop all the plates, and after a rant, rest or cry, I start picking them back up and get spinning again.

 

One thing I have realised is that I will never be able to work a normal 9-5.  I cannot fit into the schedules of the outside world, so I will no longer strive to.  It has always been my plan to run my own business or go self employed, so that is now where I see myself heading.  One step at a time, always chipping away.  I used to think I would never get anywhere, locked into the crazy cycles, but now I see a path where before there was none.  

By meeting others and realising I was not alone I broke the first chain.  By learning from others and never giving up, never closing my mind to new possibilities I have got this far and so can you.  No matter what path you follow, whether it's meds, hormones, lifestyle, spirituality, alternative treatments or surgery, you will hopefully find someone else in the same boat who can relate, and who can offer support.  We should always be accepting of other peoples choices and remember that what may have worked for us may not work for someone else.  We can always offer a word of support even if we don't fully relate...

Currently, I am building a new website to launch PMDD Awareness UK.  I am hoping this will become a base for PMDD news and campaigns in the UK.  I am also hoping that women will join in in raising awareness, and the website will eventually provide posters to download, and info sheets to give to GP's.  I am also looking at creating a mood chart, downloadable from the website.  There are no organisations working solely for PMDD in the UK.  NAPS do a great job in working on behalf of women with PMDD, and I liase with them regarding PMDD Awareness issues.  They are still our only official organisation and a great place to get info and help.  They are also all set up for that kind of thing, so me, with my PMDD Awareness UK plans will need to continue to ask women to step forward, join the tribe and help try and change things.  You know that saying.. 'if you want something done...' well WE need something done about the state of PMDD and how it is dealt with, WE need to be prepared to write a letter or put up a poster...  It may only seem like small steps, but that's all we need to get started.  It's better than no steps at all! If you haven't liked the PMDD Awareness UK page, please come and do so www.facebook.com/pmddawarenessuk

Lots of love to you all! I wouldn't have got here if it hadn't been for these groups and the readers comments and messages on my blog! all of which have supported me along my journey, so thank you!

If you would like to join my new UK Facebook support group, and you currently live in the UK, please follow this link!  https://www.facebook.com/groups/ukpmddsupport/

Mind! here we come! and NEW NAPS FORUM!

After my third attempt at trying to get through to Mind, the mental health charity regarding the inclusion of PMDD on their website, I finally wrote again, making it quite clear I wasn't happy.  This time I got a reply.  I have to write a proposal form so it can be taken into consideration at the next meeting which is in February 2013.

I passed the information on to Jackie Howe from NAPS as I felt a little out of my depth.  I believe we are now going to be working on this together, as I saw this on their website today!

http://www.pms.org.uk/About+PMS/Bulletins/2012+Bulletins/November+2012/item1299/

Cat Hawkin’s has been working very hard to create greater awareness of severe PMS/PMDD and has been a major campaigner to gain acceptance by the WHO of PMMD in their International Classification of diseases. She has received notification that she can now make a proposal to MIND, the mental health charity, for a web page ,called Understanding PMDD.NAPS will be taking forward this proposal with Cat. Many women.... read more..

Feeling pretty good about this!  Let's hope we get the recognition we need.  The more people who learn about PMDD, the more the demand for research and development of better treatments.. which in turn leads to a better general understanding of PMDD and an easier journey to healing and management of symptoms.

In other news...

NAPS have re opened their forum!  It's free to join and was always a hive of conversation.  Pop on over there and sign up!  While you are there, take a look at their membership.  You can get access to specialists and advice.  NAPS is the only charity working for PMS and PMDD, every member helps them to do more work and raise more awareness...

PMDD Awareness UK

It's a new moon today, AND it's PMS AWARENESS WEEK so there is no better time to launch my new project. A place to keep all the campaign work separate to the blogging, and somewhere to focus all the PMDD Awareness stuff....

INTRODUCING.....

https://www.facebook.com/pages/PMDD-Awareness-UK/113398732150471

There will be a new website coming soon!

I will be continuing all the campaigning over there and hopefully we can get bigger and stronger in 2013.  I will of course still give updates here, but this new project will give me somewhere to focus more on raising awareness in the UK.

Please come and give me a like, even if you are not in the UK. By fighting for this here, I hope it will change things all around the world. ♥

PMS AWARENESS WEEK STARTS NOW!

Well.. 24 hours ago actually but lets just say my day has been challenging!

Thankfully though, I had just enough energy left to finish what I had planned to do today.

So here are some more images to share for PMS Awareness Week 2012.

If you like them and share them, please come and give my page a LIKE over on Facebook.

If you fancy helping raise awareness and feel like giving a few leaflets out to local surgeries and health centers, give NAPS a call, they can send you some 'official' leaflets. Click here to go to NAPS.
 

(c) Cat Hawkins - www.chaoticat.com

PMS AWARENESS WEEK 2012

Next week, on the 13th October 2012, we see another PMS Awareness Week in the UK.

It is run by NAPS - The National Association of Pre Menstrual Syndrome.  Many women end up on their site looking for information, and they have a great team of people behind them, including PMDD specialists.  You can find them at www.pms.org.uk.  They are a small charity and rely on others helping to raise awareness and organise events.

If you would like to join in with the event, please follow this link www.facebook.com/events/266378583482849/ .  Even if you don't live in the UK, you can participate by making this the week that you talk to someone about your PMDD.  Raise awareness in whatever small way you can.  If you really want to organise an event and try and raise some cash for NAPS or just awareness, then go for it!  give them a call and see what promotional material you can get.

It was PMS Awareness Week two years ago that got the ball rolling.  I wrote to the local paper and asked if they were covering anything for PMS week and if they would like to hear my story.

I didn't hear back for a couple of months, and PMS Week was firmly in the past, but they did contact me, and I bravely/madly/insanely told my story to the local paper.  It was that story that led me to start the PMDD Support groups, that now stand at 4 groups on Facebook.

Last year, I created a small image to be passed around on Facebook to raise awareness, and this year, I was asked to do the same again.

If you are on Facebook, please follow this link to share the images.. and don't forget to give my page a LIKE while you are there!  www.facebook.com/media/set/?set=a.277344152377226.57370.242797265831915&type=1&l=1b6b440936

I ended up creating a couple of more informative posters too, as it's been something I'd thought about doing a while ago (and the whim took me!).  Feel free to use and share, just please keep my copyright and web address on them...  I may not make any money from the work I do, but I spend a lot of time creating these things!

 

(c) Cat Hawkins - www.chaoticat.com

**Exciting PMDD Campaign UPDATE**

Haha.. it makes me giggle saying PMDD Campaign!! I had no idea what writing off to my MP 6 months ago was going to grow into!!

Back to the important stuff!

After a few, very poor and disappointing replies from my MEP's (Member's of European Parliament) I have finally had a breakthrough in the form of the lovely Catherine Bearder MEP.

She has written to me with full support of the campaign to get PMDD recognised by the World Health Organisation.  She has written on my (and all sufferers) behalf to the WHO and the European Commission.  I have also written to the WHO, but to date, I have not yet received a reply.

To the World Health Organisation, Catherine Bearder MEP wrote...

Letter to Roberto Bertollini - Director of WHO Brussels
Roberto Bertollini - Director of WHO Brussels

World Health Organization (WHO)
Office in the European Union

23rd January 2012

Dear Mr Bertollini,

I have recently been contacted by my constituent named Cat Stone who resides in the South East of England. Ms Stone has been diagnosed with Pre-Menstrual Dysphoric Disorder (PMDD) and since her diagnosis has become an avid campaigner on this issue and is keen to create awareness both here in the UK but also in the EU.

Ms Stone's concern, and it is one that I also share, is that this condition is at present not recognised within the WHO's International Classification of Diseases. Within the UK, the EU and indeed across the globe women are being incorrectly diagnosed with other disorders such as Bi-polar or hormone imbalances. As Ms Stone correctly highlights within her correspondence this often leads to mental health professionals and gynaecologists at a loose end as to how to deal with women who are not responding to the treatment that they prescribe.

Furthermore and potentially of utmost importance is the problems caused by the disabling nature of this condition. Women who suffer with PMDD struggle to secure and retains relationships, employment and on a monthly basis experience mood-swings that cause great difficulty in their everyday lives.

In light of this I am writing to ask you whether this is a condition that the Who Office in Brussels is aware of and if so whether there are current or future plans to promote this in partnership with the European Commission at EU level? Additionally, I am aware that there are plans to revise the WHO's International Classification of Diseases in 2015. Subsequently, are you aware of any plans to list PMDD within the International Classification of Diseases? If no, would you consider supporting and promoting this as an option and as a step forward for women across the EU and the world? I am convinced that in doing so the consequent effects such as diagnosis and treatment guidance for GPs would ensure that women who suffer with PMDD would be able to locate the treatment they deserve in order to manage and improve their everyday lives.

Thank you in advance for your assistance with this matter and I look forward to hearing from you in due course.

Yours sincerely,
Catherine Bearder MEP

I am thrilled that Catherine has taken the time and effort to support this cause and write such a well informed a thorough letter to the WHO.  She also wrote to the European Commission...

Written Question to the European Commission

Subject: Pre-Menstrual Dysphoric Disorder

In the UK it has been suggested that 800,000 women suffer from Pre-Menstrual Dysphoric Disorder (PMDD).  PMDD is a condition that causes chronic mood-swings and affects women's mental health on a monthly or bi-monthly basis.  Women who suffer with this condition often struggle to retain stable relationships and employment and as the condition is not recognised by the World Health Organization's (WHO) International Classification of Diseases, it is often wrongfully diagnosed as Bi-polar or the like.  Women in the UK are often left without treatment as prescribed treatment by mental health professionals and gynaecologists for illnesses such as Bi-polar do not work.

If 800,000 women suffer with this condition here in the UK one can only imagine the millions of women who suffer with this EU wide.  In light of this can the Commission highlight any work that they are carrying out with regard to this condition at EU level?  Furthermore would the Commission also clarify whether they do or would support the call for the recognition of PMDD within the WHO's International Classification of Diseases?'

 

Catherine Bearder MEP

I'm sure I don't need to express how important this is for sufferers of PMDD.  With MP's, MEP's and the Chairman of NAPS behind this, we could really see this change happening.  If PMDD get's fully recognised by the WHO and listed in the ICD - International Classification of Diseases, no doctor will ever be able to say that PMDD doesn't exist.  No longer will women be palmed off by health professionals.  This would be a major change, and in turn, we will see more research and treatment methods being devised. 

Many, many thanks to Catherine Bearder MEP for taking the time to support this campaign.  With her influence and that of the other MP's on board, we are really on the way to getting thigs changed for PMDD sufferers worldwide.

To read my original blog about writing to your MP and MEP's, please click the link below..
http://meetmypmdd.blogspot.com/2012/01/be-change-get-involved-write-letter.html

Websites to recognise PMDD

Along with the 'Write to your MP' campaign, which has now had personal recognition from Nick Panay, the chairman of NAPS (National Association for Pre Menstrual Syndrome) and member of the ISPMD (International Society of Pre Menstrual Disorders) I have been working hard at trying to get other organisations to include PMDD information on their websites.

 

After browsing many mental health websites I have found there to be a distinct lack of any mention of PMS or PMDD.  I have been in touch with Mind, the biggest mental health charity in England and Wales, and just before Christmas 2011, they published a blog I wrote about PMDD.
I am still working on getting them to include PMDD in their list of popular topics.  If you feel you would like to help put the pressure on Mind to list this disorder, please email them at info@mind.org.  The more people who question why they do not include this information will hopefully lead to them including this disorder on their website and maybe even a printed information leaflet.

In early January,  my case study was finally added to the Wellbeing of Women Website.  Wellbeing of Women is a research charity, specialising in Women's health and research.  I found their website back in November 2011 and clicked on the PMS link, only to find no information.  I offered my story as a case study, and it finally went live a few weeks ago.  You can find my story, with an expert review of PMDD by Nick Panay here - http://www.wellbeingofwomen.org.uk/your-wellbeing/your-health/pms/ .

I also contacted the Mental Health Foundation, asking why they did not include PMDD on their website.  The Mental Heath Foundation are a leading charity involved in all aspects of mental health care, research and service improvement.  Again, I was asked if I would be a case study for them, so they could include PMDD on their website.  Funnily enough, they had already received another email from a lady with PMDD that very same week, and so have decided to create a dedicated page to PMDD to help visitors to their site learn more about PMDD and find support and help.  This should be up online very soon.  I will keep you posted as soon as I hear from them that it has gone live.

This means that ladies seeking information on PMDD will now be able to consult some of the larger organisations websites and not feel like their disorder is missed out or doesn't exist.  I feel one of the MOST important websites to include this information is Mind, and I will continue to write to them until they include it.  As I mentioned before, if anyone else would like to email them to make them aware of how much this is needed, please do so by writing to info@mind.org.

Recognition from Nick Panay and NAPS

I recieved an email  today from Jackie Howe, the CEO of NAPS (The National Association of Pre-menstrual Syndrome) who has passed on the details of the 'Write to your MP' blog in a bulletin to all it's members.

To my surprise and delight, I have even been given personal recognition from Nick Panay... He wrote..

"Our thanks to Cat for her excellent initiative. It’s now up to all of us individually to ensure that we make a difference and ensure proper recognition of PMDD."

Nick Panay, NAPS Chairman and member of the ISPMD Panel (International Society for Premenstrual Disorders) working on the consensus, commented, “The work pioneered by Cat Stone is excellent as it will increase the head of pressure for the change we are hoping to implement through the ISPMD group.”

I am SO chuffed I feel like crying!! Wow... Just wow....

To read the full bulletin, please go here http://www.pms.org.uk/About+PMS/Bulletins/2012+Bulletins/January+2012/item1242/

So please.. if you were doubting or trying to decide if it's worth writing to your MP then don't!
It REALLY will make a difference, and the more ladies who write, the more pressure will be put on the WHO to listen to our needs.  To have such an expert backing the cause is so reassuring.  There is weight here, there are people in power and The Chairman of NAPS, Nick Panay, is supporting us all the way!

BE THE CHANGE!

To find out how to get involved, please read my previous blog  http://meetmypmdd.blogspot.com/2012/01/be-change-get-involved-write-letter.html

BE THE CHANGE! GET INVOLVED! WRITE A LETTER!

How could YOU make a difference to PMDD sufferers all around the globe?

Do you suffer anywhere on the spectrum from PMS to PMDD?

Do you have a friend or family member who suffers from PMS or PMDD?

Do you feel hopeless, like there is no way you can help or change things?

There IS a way you can help make life better for women who have PMDD, and all it takes is a letter.  

Whether you are a sufferer of PMDD or a concerned friend or family member, you CAN help to make a difference.

During my recent research, I have realised that everyone in the medical profession, ultimately refers back to what I see in my mind as a big HUGE book called The International Classification of Diseases, or the ICD. It is published by the World Health Organisation (WHO). This started in the 1850's as classifications of death and has been altered and revised over the years to become what it is now...

From the WHO website

“WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.”

This 'book' is revised roughly every 15-20 years, and as new research is discovered, the book is constantly updated and is available in it most current 'draft' edition. The next publication date is 2015 for ICD 11. (The current edition, ICD 10, was published in 1990... just think about what has changed since then.)  PMDD is not classified in the ICD 10. 

PMS is listed as a physical disorder – N94–3, ‘premenstrual tension syndrome’, under ‘Pain and other conditions associated with female genital organs and the menstrual cycle’ and there is no requirement for a minimum number of symptoms or for functional impairment to make the ICD–10 diagnosis of PMS.

PMDD is currently in the draft edition of ICD 11, and is described as follows within the section 'Diseases of the Genitourinary System > Non-Inflammatory diseases of the female genital tract > Female pelvic pain associated with genital organs and menstrual cycle' :

"Severe form of premenstrual syndrome considered as a distinct clinical entity, characterized by prominent symptoms of irritability, anger, internal tension, dysphoria and mood lability. Diagnosis requires a prospective symptom diary documenting specific cyclic symptoms associated with the luteal and menstrual phases of the cycle, and evidence of socioeconomic dysfunction. "

Just because it has reached draft stage, it STILL doesn't mean it will make it into the next edition of the ICD. The ICD is mainly used in Europe as the standard text for physicians, specialists, researchers, drug trials and more.

In America, illnesses are classified by the DSM - Diagnostic and Statistical Manual of Mental Disorders, currently in it's 4^th text revision. DSM 4 was published in 1994 by the APA – American Psychiatric Association. This revision lists PMDD as ‘premenstrual dysphoric disorder’ in the section ‘Mood disorders not otherwise specified’, with its clinical criteria laid out in Appendix B – ‘For further study’. This is still not specific enough, and there are currently proposals to give PMDD it's own classification in DSM 5. The 5^th revision of the manual is due out in 2013. The APA have a section on their website about the new proposals which you can find HERE. This proposes that PMDD has it's own placement within depressive disorders rather than be hidden in the appendix as it was in DSM4.

What will it mean if it goes into the ICD 11 and DSM 5?

It will mean that doctors can't say “it doesn't exist”, it means that it will be recognised in the medical profession as a very REAL and debilitating condition. It would mean that more research could be done, more guidelines set out for doctors to diagnose the disorder, better treatments and drug trials.

I can't resist sharing this, written by a member of one of my support groups, it sums most of our experiences up brilliantly!

“Me: I have a problem with my hormones being out of balance.

Doctor: Really? Well take this pill and it will switch your hormones off altogether so you won’t have to worry your pretty head about it. Shut the door on the way out will you?

Me: I have a problem with my hormones being out of balance.

Doctor: Really? Well, take these anti-depressants and you won’t have to worry your pretty head about it. Shut the door on the way out will you?

Me: I have a problem with my hormones being out of balance.

Doctor: Really, well CBT works for that. Try that and you won’t have to worry your pretty head about it. Shut the door on the way out will you? Etc etc”

If PMDD was recognised in the same way Bi-polar is, for instance, it would change many women's lives. To be believed, to be understood, to be given real help and good sound advice.

This in turn could lead to financial help for women who are so severely affected that they can't work. If it became recognised as a REAL disorder, it could possibly (in severe cases) qualify as a disability, and then sufferers that can't work would no longer face financial hardship as they could claim benefits. I know many sufferers who cannot make ends meet, who are trying to hold down two jobs while coping with PMDD, or who are on the breadline with their children because they can't get disability help.

How do we ensure PMDD gets included in these publications?

I wrote to my local MP, Steve Brine (Conservative for Winchester UK) to find out just that. Back in August, I went for a meeting with him to discuss the best way to raise awareness within the government about this issue. He suggested that the BEST way to get this recognised is by writing to your MP (Member of Parliament), MEP (Member of European Parliament) or Congressman. One letter from one person wont get much attention, but if lots of women write to their MP's and Congressmen about how important it is that this makes it into the next publications we have more chance of being listened to. 

This may sound like a scary thing to do, but it really isn't. Below, you will find links to 2 websites. One for the UK and one for the USA. Just type in your post or zip code, and up will pop the name of the person you can write to. These elected officials are working FOR YOU. These people have access to information and people that we can't get access to. They can raise this issue, they can get information, to the health ministers and ultimately the organisations that compile and print these guides and manuals. It's like sending a message up the chain of command. If you really want to help make a difference, then please, write a letter and email it to your MP, MEP and Congressmen.

WRITETOTHEM.COM (UK)
FIND YOUR MP (SCOTLAND)
WRITEYOURREPRESENTATIVE (USA)

If your MP or Congressman is female, then there is even more reason to write. Women need to be heard, and we may find even more understanding and willingness to help if our point of contacts are female politicians.

If you are in a different country i.e. not in the UK or USA, then please find out who your local government official is and write to them. I would love to be able to provide the same quick links to find out email addresses etc for every country, but that would be impossible for me... so have a little web search and see if you can find a 'write to your MP' style website for your country.

Your letter has to be unique... If you wish to print out this blog and INCLUDE it with your letter, please do, but it will mean nothing unless you write your own story or opinion, in your own words. Maybe you'd just like to use this blog as a jumping off point, using the facts I've laid out here, but whatever you do, write from your experience and your own viewpoint, and give your address... this needs to be from a REAL person, and REAL constituent. One letter printed out a thousand times is still only one letter. If we all write based on our own personal needs and situation, we will all be counted . Anonymous letters or letters without addresses may not be taken seriously.

If you aren't good at writing letters, ask someone to help you. It could take an hour, or maybe it's a process over a week, but a little bit of time an effort could go a LONG way. Then, when PMDD gets recognised in the ICD and DSM and women all over the world start getting the diagnosis and treatment they need, you can say... “I helped to do that!”

To help you get an idea of what to write, I will share with you the letter I sent....  Please click here to see my letter.

(Remember, if you are in the USA, you can bring up the revision to the DSM 5 that's due out in 2013 too.)

Obviously, my letter is quite long... That's because I enjoy writing, and will always try and include lots of facts etc along with my own personal accounts. Your letters don't have to be that long, or, they may be longer! Do whatever is right and comfortable for you.

Use this list to remind yourself what sort of details to include:

Your name and address

• Why you are writing – are you a sufferer? Or a loved one of a sufferer?
• Explain a little about the need for this disorder to go into the ICD and/or DSM – use facts from this email or print off this blog and refer to it in your letter.
• What has your experience been with regard to getting diagnosed and treated?
• How would it help you if PMDD became recognised and more widely known about?
• How has the current 'non-recognition' of PMDD affected you?
• How are you affected financially? Are you struggling to work and live with PMDD?
• Are you a parent with PMDD who needs help and support but can't get any?

You may think your letter will be like a needle in a haystack, that it wont change anything so what's the point? But I suspect, if you are still reading this, then you are at the very least, considering getting involved! One letter and a little bit of your time is all it could take to help push PMDD from just being in the draft phase into the actual new editions of the ICD an DSM.

If PMDD doesn't make it into the 2015 edition of the International Classification of Diseases (11^th edition) or the 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders (5^th revision) then it could be up to another 15 YEARS before we get it added and officially recognised.

Do you want to take that chance?

Please leave a comment below if you plan on writing a letter to your MP, MEP or Congressman, and as always feel free to let me know what you think of this post or blog... It is always lovely to hear from my readers.

HAPPY WRITING!!

Cat x

Links of interest:

http://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=484# - Proposed revision for PMDD in DSM 5

http://www.who.int/classifications/icd/en/ - The ICD and WHO

***** UPDATE 30 January 2012 *****

I have heard back from a few women who have contacted their MP's and have had an excellent response.  It is really worthwhile letting them know your views.  Please let me know about your experiences.


Cat x

My letter to my MP

Emailed August 2011

To Steve Brine,

I live in *********** in Winchester (****** **** ******). I'm a Mum of two and suffer from a chronic, disabling mood disorder called Premenstrual Dysphoric Disorder. I run two facebook support groups for women all over the world who suffer from this condition. I also write a blog about my disorder, which won an award last year for being in the top ten PMS blogs. www.meetmypmdd.blogspot.com

From all my research and reading, what comes to light is the complete nightmare any woman, where ever she lives in the world, to get diagnosed. It can take years for the penny to drop that the mood swings and depression are cyclical with the menstrual cycle. When that realisation is made, the woman has often already been living with the diagnosis of depression or Bi-polar, and been receiving the wrong treatment.

I can speak from experience that when you find out there is a name for what you go through every day, it is a huge relief, which is then followed by endless trips to different health professionals who quite literally don't know what to do with you. The GP referred me to mental health as my symptoms brings on a dysphoric mood, depression, suicidal ideation. The mental health team say as it's hormonal you should see a Gynaecologist, they try to help where they can, but essentially, you then end up with a trip to the Gynaecologist with mental health symptoms and no one knows what they are doing! I could go on, but I don't want to bore you with all the details.. not unless it was over a cup of tea!

What I have realised is that PMDD is not recognised in the World Health Organization's - International Classification of Diseases. I have heard many stories of doctors who tell their patients that PMDD doesn't exist, and this is just devastating to a woman who has finally found (through sometimes months or years of research) a name for their illness. I did a story last November in the Daily Echo about my condition, to try and help raise awareness. So many women are out there suffering in silence, misunderstood, and so are their husbands, boyfriends, children and parents. That is if you are lucky enough to be able to keep hold of your relationships. One common theme is that many women find themselves single their whole lives, too afraid to get into relationships. Family relations can be equally difficult.

I have many things I want to do with my life, but my focus is often pulled back to my disorder and therefore, writing about it and raising awareness becomes something I can do, to hopefully help other women. I would feel like my life wasn't wasted to this disorder, and that I had managed to achieve something despite the PMDD.

We need this disorder to be recognised in the ICD. On the WHO website, it says an 11th revision is due out in 2015. If Premenstrual Dysphoric Disorder were to be included in that book it would change the life of many many women. If it was finally recognised as a chronic mood disorder, women would be able to get help quicker and GP's would know what treatment guidelines to follow. To suffer with an illness that literally makes you feel like you are completely insane on a monthly basis, and then find out that the name you have found for it isnt actually recognised by anyone is truly devastating. It makes the long struggle to find treatment that works for you, an extremely stressful, lonely and soul destroying journey.

PMDD often stops women from being able to hold down employment, yet it is not recognised as a disabling condition. Stress is a major factor in PMDD, and most suffers try to avoid any type of stress. Being a mother with PMDD is very hard, let alone trying to hold down a job as well. PMDD needs to be recognised as a disabling condition.

If I had Bi-polar, people would be more understanding, because they have heard of that, it exists, it is listed in the ICD. Premenstrual Dysphoric Disorder is often mis-diagnosed as Bi-polar as the two conditions are similar. The main difference is, a person suffering with Bi-polar, will have relatively 'normal' periods of life between episodes of highs and lows. A woman with PMDD suffers on a monthly basis, often at ovulation as well as menstruation. I was taken to hospital (for the second time) in an ambulance only 2 weeks ago with Mittelschmurz, agonising ovulation cramps. This means that when you have PMDD, you are plagued by symptoms all month long... if you are lucky, you get 10 days when you feel normal. By normal I mean, you feel like the person you are, you feel together and able to cope with life, smile and laugh even. The other 20 days are phases of mental and physical symptoms, and the constant management of these. Women with PMDD go through this nightmare 12 times a year, every year. I have had this condition since I was 13. I am now 34.

I hope, that you will be able to help raise this issue with the right people. This is a global issue, as well as a local one. Women are in desperate need of recognition and help ALL over the world...

Thank you for your time, I hope to hear from you soon.

Many Regards

Cat Stone

I met Steve Brine in August 2011.  He has since raised this issue with Anne Milton MP Parliamentary under Secretary for the Department of Health.  Today I wrote to the WHO and my MEP's (Member of European Parliament).  Look out for my next blog on how you can help get PMDD into the ICD and change the lives of sufferers world wide.

All it takes is a letter.