Tuesday, 3 January 2012

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.


PMS Princess said...

Thank you so much for doing this. I think this is a very compelling letter and I hope more people will join and help raise awareness for PMS and PMDD. I would love to repost your letter at my website @cycleharmony.com with your permission. Sincerely, Jing

Cat said...

Hi Jing! I left a comment for you on Facebook too! I have written a blog about writing your own letters... You can find it here http://meetmypmdd.blogspot.com/2012/01/be-change-get-involved-write-letter.html This blog contains all the details you can cite (for UK and USA) and how to prepare your letter. I would be happy for my letter or the above blog to be shared, however, it is really important everyone writes their own letters in their own words. Something that has been copied or cut and pasted will not be taken as seriously. With Love.. Cat x

Hormones and me said...

Wonderful - I will be writing my letter x

PMS Princess said...

Thank you for your permission, Cat. I'll let you know when it's posted on my site.

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