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)
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

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.

Happy New Year!

Many blessings for 2012!

Thank you for all your support in 2011.
Wishing you all a very merry New Years Eve!

Keep on keeping on!

Cat xx

"Nothing in the world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan, 'press on' has solved, and always will solve, the problems of the human race."Calvin Coolidge

PMDD and Me

Today, the Mind blog published a blog I wrote for them titled, PMDD and Me.

This is a really good step, as Mind currently do not cover PMDD in their list of disorders, nor have any leaflets about it.  Ladies with PMDD need to speak up.  They need to make 'the powers that be' aware of their existence, their struggles, their needs.

I hope this goes a little way towards making people listen to women with PMDD, and that women eventually get better support and help to living a better life.

You can find the blog here http://www.mind.org.uk/blog/6201_pmdd_and_me.  Please share the link on Facebook or email...

Never stop passing on information and raising awareness, in whatever small way you can.

Cat x 

Bring on 2012!

This past month has been super busy.

Following a more spiritual path through my cycle, the benefits are amazing.  I am getting through each month pretty well.  Things still knock me off track, but I certainly don't feel as out of control as often, and I've had plenty of things to keep busy with.

My sister site - Natural Shaman, is becoming such a positive focus for my writing, and women's menstrual health.  It's nice to be able to write and talk to all women, rather than just to one specific group.  It leaves me to be very open on subject matter, and I need that right now.

I have just released a poster to help women begin to understand the energies that lie in different parts of their cycles.  It is available through the link below and on the right.  It's very exciting to have drawn an image that is now a poster, almost ready for sale!  If you want to find a different way to see your menstrual cycle then start here!

If you would like to keep up with my writing, please subscribe to my Natural Shaman Blog.  I may not cross post everything I write there, and I could use some extra followers!

Other news is that I was asked a while ago to write a blog on female mental health for Mind, the leading mental health charity for England and Wales.  I have just heard that it will be published next week!  Make sure you like Mind's page on Facebook or visit the Mind Blog.  I will post the link here too, when it's available.

Busy times... Can't wait for 2012!

Something to ponder...

Think back to when women lived in tribes, in huts, outside. In fact.. you don't always need to think back, there are places on the Earth where women still do.
Firstly, there is no sanitary products. You use rags. There are no toilets or running water. Women would come together in a moon lodge and sit to bleed together. They separate themselves because they are at their most powerful in a spiritual sense. They also separate themselves and stay in a safe place for practical reasons...

I read recently about a tale of a tribal woman, caught out, away from the village. She began bleeding. The smell of fresh blood brought wild animals. She is faced with an almost certain attack and death. She climbs a tree and uses her clothes to soak up the blood. She stays up the tree and waits....

What survival instinct is it that switches on our anger and fierceness? Makes us bitchy, crazed, raging, critical, powerful?

IF we are not safe and secure during our period, we may suffer the remnants of this ancestral survival instinct and fear for ourselves. In the wild, the smell of blood equals food for animals, women are vulnerable... We now over compensate for that vulnerability but making sure we scare off everything so we can be alone and safe...

It's like looking up at the Moon and stars and realising that our ancestors looked up at the same Moon.  Every time we bleed, we connect to every woman that has ever gone before us, we all share the same experiences, and women, ONLY women are part of this club. 

No man, no matter how strong, virile, amazing or good can bleed without dying, regularly, like a woman.  No man can ever truly understand the wisdom found in bleeding.

Women are so sacred to this planet.   ♥ 

Creating Menstrual Health Workshop with Alexandra Pope

Last Saturday, I attended a workshop run by Alexandra Pope and Sjanie Hugo Wurlitzer. The workshop was about 'creating menstrual health' and as I have been reading The Womans Quest workbook for the past 8 months, It seemed like a good opportunity to meet the author and other women who were also interested in the menstrual cycle's energies. I feel like I am a world away from the state of mind I was in when I first contacted Alexandra... a plea from a desperate woman, to someone who might be able to understand what I was going through. We chatted via email, I downloaded the thought provoking workbook, and joined her community site.

I was around day 18 of my cycle, so heading into unstable territory, so I arranged for my partner to drive me to Fulham in London and get me to the venue. I don't cope on trains and tubes very well, especially alone and in the second half of my cycle.

The venue was beautiful. It looked like a converted church and had the most beautiful stained glass rose windows. Everyone was welcoming and open. It is always a daunting thought, meeting lots of strangers all in one go, but there was a lovely energy in the room, and as women do when they get together.. lots of chat and laughter. The whole building was beautiful, clean and calming. As we moved into our work room, yet another stunning stained glass mandala faced me.

The day consisted of a lot of chat and discussion on the menstrual cycle and where we may have issues. We explored the similarities between out menstrual phases and the seasons experienced on the Earth. I am in my element with correspondences and symbols, and loved widening my thoughts and knowledge of this divine code.

Our inner Spring, is very similar to our outer spring. This 'Springtime' represents pre-ovulation, when the fog of our period lifts and our light and energy returns. Many of us (PMDD sufferers) will call this 'one of our good weeks'. We feel like ourselves again, we have energy, we want to get on with life again. There is an innocence about this time, and it is a time we should spend nurturing our ideas and making plans. New shoots are growing, life is returning to the earth... and you.

Inner Summer relates to ovulation. The Sun is high in the sky and everything is fertile and blooming. We are 'out there'. We can be social, we can enjoy life. It is a time for manifestation. Another 'good week' for many, although this too can bring a difficult time for some. If we are not fulfilling the things we want (on the most basic bodily level this would be getting pregnant), there becomes a fear of summer's end, of missing the chance, of the wheel turning all to quickly.

Inner Autumn is pre-menstruation and is when PMDD sufferers will hit the 'bad times'. Most will start losing a grip on reality during this season. The Earth is retreating, leaves are falling, the cold winds pick up. It is an unsettled and unstable season, flitting from late balmy sunny afternoons and bright crisp mornings, to stretches of dull grey rainy days, storms and more rain. Our energy and flow begins to slow down, we get forgetful and easy to enrage. Women with PMDD need to really try and understand this season, and learn how to harvest it's fruits and develop and awareness of what is really going on inside them.

Our inner Winter is connected to our menstruation. Our whole month is connected to how well we bleed and deal with our period. Just think to days gone by, when we had to harvest as much as we could all year to just survive the winter. If we are careful and look after ourselves, we will reach the Spring. If we have been smart and resourceful, we may even reach Spring still strong and healthy, rather than starving and weak. If you allow the natural need to retreat and hibernate, if you honour and listen to what your body needs, if you get enough sleep and good food, you have the potential to reach the Spring, empowered, full of anticipation rather than dis-empowered, full of guilt and stress.

There is much more I could say about each season, in fact, I could write a couple of posts on each one!! So I will leave that there for you to digest and contemplate. I am obviously describing a cycle, but everyone's cycle may be different. They will most certainly feel different things at different times and for different reasons. Interpretation comes down to the individual, and you cannot forget the different life stories of each individual and their own reactions to each season. How do you feel about each season? Do you have favourites? How do you cope with each season?

As above, so below, As within, As without – A Witches saying.

What goes on outside us, is often a mirror to what is going on inside us. I'm sure it's no coincidence that I have a hard time through my inner Winters, and also suffer from SAD during the outer Winter. Maybe if I learn how to love the inner Wintertime, I will also heal my SAD?

We followed a guided meditation spoken by Sjanie, and stopped periodically (through each season) to write and draw down our visions. We discussed with partners our experiences and feelings.

We then got into groups and each discussed a season. The rest of the day was unpacking all the words we had thought of to describe how we feel about each season. It was very enlightening and heart warming to hear other people's stories and to feel so connected to other women. It was also re-assuring and exciting that other women understood these concepts and each and every one of us felt that we all knew it anyway. 

We have all had this potential, this inner knowledge, like a glimmering, ornate, gold box full of our inner strength and power, full of the words of our ancestors and subconscious. Alexandra and Sjanie gave us all the key to unlocking this magic box, and I'm sure that every woman there will be sharing this knowledge with anyone who would care to listen for many years to come.

There is a revelation to be had in exploring these ideas, there is a REVOLUTION to be had by every woman, to educate, to share the knowledge, to break down all the stigma and hatred that has been pointed at our menstrual cycles. To reclaim our menstruation as our sacred time, to be allowed to become whole, rather than living the half life we are all supposed to live because it is socially acceptable. As a woman, I will demand respect, from myself and others during my bleed. It is a magical thing to bleed as we do every month. We get a new chance every month to heal and learn and understand ourselves.

If you are interested in The Woman's Quest and Alexandra Pope's and Sjanie Hugo Wurlitzer's work, please visit these websites:

http://www.womensquest.org/Home/Index

http://www.wildgenie.com/