Tuesday, 4 November 2014

Menstrual Cycle Posters

For those of you thinking about purchasing a poster, I am almost sold out of A4 Secret Feminine Energy posters, so if you would like one, please purchase soon as I may not be getting any more printed.

I have also decided to give away a FREE menstrual guide with every A3 poster purchased while stocks last.

You can find all my posters in my Etsy store

If it's your first Etsy purchase, you can get £5 off if you spend over £10 by clicking this link http://etsy.me/1xVg453 (more info can be found HERE)

https://www.etsy.com/uk/shop/ShaktiMandala



Monday, 16 June 2014

Handing things over...


Recently, I decided I can no longer maintain the PMDD-Community page and PMDD Awareness UK pages on Facebook.  It breaks my heart every time I cannot respond to a message, and the pages need an injection of energy and enthusiasm that I just can't muster now towards PMDD things.

Within a few days of the call out on the community page I had found someone perfect for the position.  It's a challenging place to be when you have thousands of likers and you can no longer continue what you started, so it was always my priority to hand over to people who I feel have every intention of keeping these spaces going to the best of their ability.  Jenn Stephan has experience in running pages and women's health, alongside being a PMDD sufferer and is looking forward to adding more content and creating conversations on the page.  I'm sure she will do just great.

So, I bid farewell to a community I have looked after for 4 years.  It is both a sad and happy time.  It will be strange not to check in on the page every couple of days and to no longer have the responsibility to reply to comments and queries.  I am looking forward to really being able to move on without thinking about PMDD or being called back to help someone else in need.  It may sound selfish, but I know I have dedicated a lot of my life to helping others while healing myself, but for this next part of the journey I need to go it alone (symbolically!).  I still run a a couple of support groups (I don't know if I might need some support during the next part of my journey, or if that's even the right place, but it feels right to still have some connections there)

The PMDD Awareness UK page is also being handed on to a lady called Victoria.  Victoria currently admins the UK support group and is looking to help raise more awareness.  Victoria's own journey with PMDD sees her recovering from a hysterectomy, so if there is anyone who can understand first hand the struggles of living with PMDD it's her.  I'm hoping she will enjoy running the page and helping others as much as I have.  Taking hold of the PMDD baton and running with it is essential to the future of PMDD being understood, so I hope these women realise they are doing a worthwhile and needed job for others with the condition.

My best wishes to them both.  The posts I make to these pages over the next few days will be my last, as I help the new ladies find their feet.  I will always remember what was achieved and how much support I got through these spaces.  If you are searching for help, go there now and ask for help.  Someone is there waiting to listen and share advice.

Much love x

Monday, 19 May 2014

Poetry by E M *Guest Blog*

'PMS: Part 1'

Hunger. Emptiness. Holes.

It may be that I shall further reduce myself,
spit out a body.
The omnipotent female core of me is alert, aware:
she will not let me sleep, rather eat, eat.
Ravenousness multiplies fat cells; hunger softens the body:
the cries of fleshy hips smothered by dark shapeless clothes,
the swollen breasts with their aching teats constricted.
I am contained. I stand prone, chained at the stake,
looking out from these eyeholes, chewing and swallowing
instinctually like a calf-heavy cow.
Defenceless against nature.

The vagina is the killer.
A penis is something but a vagina is

nothingness,
an absence
a space
Holes and hunger!
Food, a penis, a baby:
I need to fill my holes
somehow.
I cannot think until it is over;
this obsession is blinding my mind.

Let my blood flow. Let me give birth to myself. Let me return.



'PMS: Part 2'

PMS hits me.
I'm unaware and unprepared
every time.

(I forget, I change.)

Cravings without hunger;
exhaustion without tiredness;
tears without sadness.

I do not graze, I gorge.
I have no energy.
I cry.

Yes, I am utterly enslaved by my body.
It will not let me go.
I am trapped until my blood runs out.

'PMS ends'

I cannot control the floodgates.
Suddenly, I am bleeding.
I am a leaky vessel.
My blood is uncontained.
I flow in pain.
It is my time, but I did not choose it.
E M - UK

Saturday, 17 May 2014

Hysterectomy for PMDD by Jennie. Readers Q&A

A question about Hysterectomy and a response from Jennie, who has had a hysterectomy for PMDD.
Many thanks for creating such a great website.  I've just begun the hormone treatment but I've decided if this doesn't work I'm going to have a hysterectomy.  Have you had this done or decided to just live with it?
Uterus Body Painting by Bethany Roberts
I personally decided not to go down the hysterectomy route,  I tried out the Zoladex injections for 3 months and became very ill.  It was the blackest 3 months of my life and I ended up with many more sucidal thoughts than normal.  To help the withdrawal off the injections and to try and stabilise my mood, I was given lithium.  The whole experience was terrifying.  Having said that, I didn't have great support while I was on it.  No 'experts' looking after me, so it was a very unpleasant experience in my eyes.  I had got to a point where I believed there was only one way to go.  Only one option left.  Surgery.

When the hormone therapy didn't work for me I was devastated, I thought my life line had been cut.  But things changed, I began to change, and I found other ways to live with and manage the PMDD.  It's not easy, but with my body free from all medications I can be more in control.  The decision to live with it rather than go down the surgery route has been made easier with the easing of symptoms and family support.  I work with my cycle now, my life has been transformed and I am glad I didn't go for surgery.
To give you another view point, I passed your question over to Jennie Webster.  Jennie has been working really hard to raise awareness in Scotland for NAPS and PMDD in general, and she has always supported me and my projects.  Jennie recently had a hysterectomy and spent time on hormone therapy, so  I felt she was better qualified to provide an real honest answer about going down that route!
Jennie writes;
I spent nearly 5 years on hormone therapy to treat my PMDD. I used GnRH (Gonadotropin-releasing hormone) Analogues which are injections to shut down the ovaries, stop the menstrual cycle and induce a medical menopause.

These injections worked really well for me and whilst I had some issues regarding the add back HRT, I felt more like myself on this treatment than I ever have. I couldn't take any form of progesterone whilst on the injections so I had unopposed oestrogen for many years.

My gynaecologist kept a close eye on things enabling me to have regular ultrasounds to monitor my endometrium (womb lining). For a while, everything was okay but, eventually my luck ran out and I was told I had hyperplasia which is an overgrowth of cells on the endometrium. Because it was so severe, the only treatment option available to me was a total hysterectomy. I had been avoiding this surgery for years but knew that I would go down this path eventually, however, it still came as a shock.
I had the surgery in November 2012 and I don't regret it for a minute but I am now in surgical menopause and it's no picnic. I had my ovaries removed during the operation (the ovaries are responsible for the production of hormones which cause PMDD) and this means that I was thrown into menopause overnight.
I started my oestrogen only HRT again but as it takes a while for the blood levels to even out and due to previous reactions to HRT, I have to take it slowly. It’s a fine balancing act which I am only too happy to spend some time doing, but in the meantime, my body is crying out for oestrogen. I am having hot flushes, headaches, night sweats, joint pain and extreme tiredness which are all well known menopausal symptoms. I am also having mood swings (swinging between happy, sad, angry and more, rapid style) which is all down to hormonal imbalances. It seems unfair that I have spent my life suffering because of the hormones that my body produced and now I am suffering because of the hormones I am putting back in to try and have a healthy life. I am hoping to have this balance achieved very soon.
I need oestrogen to protect my bones and heart as I have gone through the menopause at a young age.  Swings and roundabouts. Every time I catch myself feeling low I try and turn my thoughts into happy ones but I’m finding it hard as I am still tired from the surgery.
The surgery really is the last option, the end of the road, the only documented real “cure” for PMDD, but I urge anyone who is considering it to be 110% sure that this is the road they want to take. It may be stating the obvious, but it's irreversible. My ability to bear a child has gone forever, I will be on HRT for the next 20 years and I run the risk of osteoporosis and premature heart disease.
There are many other ways to manage PMDD and, in my opinion, surgery should be seen as the very last resort.
Would I do it all again if I had to? Absolutely, but everyone is so individual. Please, if you are considering the operation, ensure you have thought long and hard about it and make sure that it is the right decision for YOU.
My thanks to Jennie for sharing her story.  I hope that helps some of you considering having a hysterectomy for PMDD. 

Friday, 16 May 2014

The Edge by Caroline *Guest Blog*

I'm standing barefoot, I can feel the grass under my feet. My toes are curled over the edge, another few inches and I'd be teetering.

The 'edge' is a desperate, consuming place where I feel that this is it. Sometimes I've walked towards it throughout the day, others I've woken up & I'm right there staring oblivion in the eye.

In my mind, the 'edge' is for arguments sake 'Beachy Head'. Throughout my day, its my background, it's always there. I can see, feel, hear it.

On the good days, it's sunny, warm, waves lap at the shore. On the darkest days, it's oh so black, cold & unforgiving. But the difference is, is that it's not my background, it's my here and now.

I stand on that 'edge' staring not at rough seas & blackened sky, but at an abyss of nothing and I can feel oblivion pulling me in. I don't want to be consummed by it, but sometimes I don't have the strength to walk or even crawl away. I've never been pulled in, I've come very close to losing my footing but somehow, something, someone has pulled me back.

I never stand on the 'edge' when the sun's shining & twinkling on the water, because I'm having a better time over there with family, friends, my life.

I'm managing oblivion, I'm repelling it & living my life, those days are the good ones.
The 'edge' is my background, somewhere where I don't want to go.
Today is not an 'edge' day. Today is the beginning of making me strong, resiliant, worthy of more than oblivion.

Caroline.
West Sussex, UK

Wednesday, 14 May 2014

The PMDD Underground by Rachael *Guest Blog*


My hormonal shifts are like a day trip to London. I am in a euphoric, happy state when I am above ground, then the tube ride symbolises the worsening of my symptoms before the final rush of relief.

Day 1 to 15… (approximately!)
I am up early and have already done a million jobs. I am above ground, ready and excited for the day ahead. I am looking at the famous landmarks and drinking in the astonishing history and culture; reading everything, hungry for knowledge and experience. The weather is chilly, but sunny and the hustle and bustle of commuters and tourists is interesting, purposeful, comforting, inspiring. I go clothes shopping and everything fits; looks stylish, trendy and flattering. I have lunch with friends; I choose a healthy selection of foods and I feel empowered and happy. I am intelligent, chatty and funny; I smile at the world and the world smiles back. I walk with my head held high and a confident swagger, secure in my life’s purpose: proud to be British, proud to be alive.

Day 16-day 28… (approximately!)
I descend the steps to the underground… people push past me and I trip, dropping my handbag and a million different painkillers spill out (none of which work), along with a lipstick which looks ridiculous on me anyway. Seriously, can you WATCH WHERE YOU ARE GOING YOU TOTAL IDIOTS!? Does this little old lady NEED to be walking in front of me right now?

Calm down I tell myself… they’re just people… going to work, going shopping, doing all the same things they normally do- it’s you that’s changing. I descend a few more steps…. Phew! Why does it have to be so HOT down here, seriously what is WRONG with the world??

I fight the crowds to purchase my ticket… how much?? That CANNOT be right, surely? Oh and when did this dress get so tight? My boobs feel like they’re going to explode. Everyone is looking at me and wondering what the hell I’m doing here, I don’t deserve to be using this service…just look at me!

I stand on the platform; everything goes into slow motion. I am alternately hot and cold, anxious and fidgety and nauseaus, angry and fighting back tears…. Oooooh look, a vending machine!! I NEED CHOCOLATE NOW!! It’ll make everything better, it couldn’t be worse. No-one cares if I put on weight; no-one fancies me or likes me anyway. What are you staring at??? Sod off… you’d eat chocolate too if you had my rubbish life.

Looking at the digital countdown on the clock, next tube in 2 minutes… I am relieved and scared at the same time. What if there’s a big push? I can’t handle being squished between strangers with BO and trendy skinny girls with their exciting lives and amazing shoes. 1 minute 30 seconds… I can literally feel time passing.

The tube arrives, I’m not ready for it. I don’t really want to go there anyway… I try to turn back but my way is blocked and I have no choice but to get on. Oh the NOISE!! The pain of the screeching brakes and the flashing lights. My head is going to explode! I feel panic rising and I do not know what to do…
Then it all goes quiet, the tube goes through a tunnel. Everything is black and cold, like the end of the world. I feel like I’m on the Hogwarts express and the dementors are feeding off every happy memory. Well, at least you don’t have to go through this every friggin’ month Harry!!! I want to cry and cry and I have no idea what for. I can’t even see or hear another human being; I am all alone.

The train begins to slow, the lights flicker on and faces emerge from the darkness. They are kind, friendly and familiar. My breathing returns to normal and I start to take an interest in my surroundings. Oh fab, I’ve just found an apple in my bag. I do like my hair like this, it’s looking nice today. Slowly, gradually, normality returns and I leave the tube station, emerging once again into the light.

There… that wasn’t so bad….was it? I enjoy a blissful few hours in the sunshine before I have to go home again. But how? Maybe I can take a bus? A boat? Steal one of Boris’s bikes? Mount a zebra from the London zoo and bareback it up the M25? No… there’s no option, it’ll have to be the tube.
I psych myself up… ready? 3…2…1…

Rachael, UK.

Monday, 12 May 2014

PMDD: one of evolution's unfortunate developments by E M

I was furious, upset, and most of all confused, stuffing random objects into an overnight bag while my partner sat staring at me, amazed. Why doesn’t he care? I thought, why does he just sit there, while I suffer this way. Because of him. With all of my being I hated him; I despised him. All of the love I usually felt toward him was gone, and I was terrified. I am no longer in love, I thought; I am devoid of love. Hatred, anger and fear were my primary emotions, and confusion fuzzed them all up in a most disconcerting manner. Strangely, I also wanted to laugh. (Women: hysterical, hormonal lunatics? Never! How I hate being controlled by my own body.) My partner was sighing with frustration and saying things like Don’t go, where are you going? I told him that it didn’t matter, since he didn’t care anyway. About an hour later, I was lying on the sofa, crying, while he went back to sleep in the bedroom. He didn’t care about me; he’d rather sleep than comfort me. Everything I thought made me cry harder. I didn’t leave, in the end. Instead I took some painkillers to numb my mind and rather ashamedly unpacked my bag.

The above paragraph is a true representation of the sort of situation that occurs monthly for me. I have PMDD, and it attempts to destroy my relationship every moth. Sometimes I think that it’s an evolutionary thing; that, because my partner has failed to impregnate me, my body’s response is to try to push him away in order to make way for a new, fertile mate for when I next ovulate. Now, I do think that theory makes a lot of sense, but it doesn’t really help me. The fact is, I can’t have a child at this point in my life; and even if I could, doing it to avoid PMDD is surely not the best reason to have children. Do I feel resentment toward my partner when I experience PMDD? Always. Usually – and this began long before I even thought about or heard about the theory above – I start to doubt his long-term commitment to me, and feel that he doesn’t earn enough, save enough or do enough. I think that he doesn’t love me and is only in this for the sex. I worry that he is cheating on me, that he isn’t interested in me. I have all sorts of conflicting and disturbing thoughts. Now, it’s not that I never have these thoughts unless I’m in the PMDD phase, but usually I can keep a handle on these thoughts and if they do arise, they aren’t serious concerns, they don’t bother me much and I don’t act on them. But that couple of weeks before my period arrives, I am often simply unable to ignore any little thing that happens or keep a sense of perspective. PMDD takes away that control, that perspective. Like many PMDD sufferers, I feel like Jekyll and Hyde. I fear, as King Lear said, I am not in my perfect mind. I believe that PMDD heightens any concerns I have regarding my ‘mate’ and is a way of saying: You’re not pregnant – find a more suitable man. PMDD is a warning to me and a deterrent to my mate.
But in our society, PMDD is not an evolutionary advantage; it is not helpful. For the many women who are physically, mentally, emotionally or financially unable to have children, have already had their children or who do not want children at all, PMDD merely destroys many facets of life with no benefit to the sufferer or the sufferer’s society. The interference in my relationship with my partner is by far the most destructive aspect of PMDD, for me. I worry that my body will successfully drive him away, that he will eventually give up on me, having to endure my hormone-crazy self every single month. I have actually come to long for my period to come so that it can all be over again – that’s how serious PMDD is. Compared to the emotional pain of PMDD, the physical pain of a period is a breeze

by E M, UK.

Sunday, 11 May 2014

A Career in Tatters by Jane *Guest Blog*

Looking back the clearest marker for the beginning of my battle with PMDD began following the birth of my second child (aged 30). At the time I believed I was suffering with straightforward Postnatal depression, but I now know that I am extremely sensitive to rapidly fluctuating hormones; so it follows that this was the likely trigger underlying my development of PND. It would also explain the terrible mood swings of the first 13 weeks of this pregnancy. I wondered what an earth was happening to me. I now know that all of this was likely caused by the fact that I am intolerant to the hormone progesterone ( as are a lot of women with PMDD).

Bouts of anxiety and depression were then constant features of my life from this time onwards. Unaware of PMDD, I put this down to the multiple stresses in my life at the time and for many years did not identify the pattern underlying my symptoms. I think the problem was muted in the early years after my sons birth, by the fact that I was on the combined contraceptive pill (so blocking ovulation), and I muddled along for a couple of years never feeling great, but able to manage.

I am a registered nurse and had been qualified for 4 years when my son was born. At the time of his birth I was working in the intensive care unit of the busy city hospital and for the most part loved my job. However following my return to work from maternity leave, I never settled back into it in the same way. I often felt out of place, overwhelmed and regularly felt unable to connect with my colleagues. I now know that these are symptoms of my PMDD, but at the time all I knew was that I was struggling both at home and at work.

I decided that the intense role of ICU nurse was not suiting me now I was a new mother, and decided to apply for a position on one of the surgical wards. When my son was 10 months old, and a couple of months after starting my new job; I nosedived headlong into PND and was off Work for two months. I was prescribed antidepressants and started feeling well enough to get back to work.

Although feeling so much better than I had been during my lowest phase, I don't feel I ever returned to the person I had been before my son was born. I plodded (no probably jogged and stumbled) along life's path juggling working full time with bringing up my young son and teenage daughter. I decided to take a change of direction and embarked on the challenge to try and fulfill my ambition to become a Health Visitor (I have had this ambition since the birth of my daughter when I was a young mum of 18, with a volatile, unsupportive partner and my Health Visitor was an inspiration to me).

So when my son was 2 years old, I took a change of direction and successfully obtained a position working as a trained nurse with the Health Visiting team. I did this for 2 years and then successfully applied for my Specialist Health Visiting degree. Midway through the year, I stopped my contraceptive pill because having completed our family, my husband underwent a vasectomy. On reflection, I can see that this is when my PMDD took on a life of its own, and my mental health went spiraling downwards.

At the time, I never made the link...I remember initially feeling better for ditching the pill, and enjoying an uplift in mood and libido. However, I can see now that this was probably prior to my first ovulation. Shortly after this, I remember a rapid increase in anxiety, and days where I just felt completely socially phobic, and unable to connect with anyone. At the time, I put these symptoms down to a stressful course and a bad practical placement. After an initially great start, my coping ability started spiraling downward, and I reached the point where I just felt like I could not go on anymore. I remember several occasions where I was driving home and just felt an overwhelming urge to drive the car into a tree. Despite this I kept the mask in place as much as possible, and limped on scared to ask for any help for fear of the impact any support for mental health problems would have on my chances of securing a post at the end of the course. I started taking St Johns wort for mood, and stumbled on through the fog.

Against all odds I qualified, and secured a full time post. Three months later, I broke down at work and had to take two weeks off. Thus began my relationship with antidepressants. I started on medication which did help lift my mood, and keep me from falling into the black pit of despair totally. Still not realizing the link with my hormones, I seemed to spend most of my time in a state of high anxiety. I had days where my self esteem was at an all time low and I struggled to meet the requirements of my role. I managed another 6 mths before once again I could keep going no more, and ended up totally falling apart at work having to have 3 mths off sick with my mood at an all time low. Looking back, I can see that this day where I fell apart was probably either post ovulation, or pre menstrual but the fall out from this experience was huge in that, I felt a complete failure, and it took me a long time to pick myself up.

On my return to work, still none the wiser about the link with my hormones...I spent another year just coping as best as I could with high levels of anxiety and low self esteem. My colleagues got used to me dissolving into tears at times, and behind the scenes, I would go home and once again...pull myself up by my boot straps and go in the following day and cope the best I could. The most serious consequence of this time was almost certainly the fact that all my energies went into getting through my work day, and then I would get home and almost shut down with exhaustion. This was hard on the whole family. Looking back, and knowing what I know now; I really don't know how I kept going for so long.

I ended up having to take another extended period of sick leave when I broke down at work and disclosed to my manager that I had considered taking an overdose the night before. At this time I regularly fantasized about death, and when thought it was quite normal to think..." Oh well if things get too bad, I can always end it all". It is frightening reflecting back now how easily that state of mind became my normal, and I could dee now way out. Not long after this, I finally noticed the link with my menstrual cycle. It became apparent that my worst times were the last two weeks of my month. So here started a new battle...the one with the health professionals.

When I mentioned it too my GP, she took it on board initially and asked me if I had tried any natural remedies. I replied that I had, and that was the extent of the support I received. She agreed to put me back on Yasmin (the combined pill) which I had read was rated as being a good choice for women suffering with PMS. This did improve things for a while, but completely killed my any libido, and left me feeling pretty flat most of the time. However, it kept me functioning and that was the important thing.

After a while, I noticed symptoms returning with more force, and worst of all...I was experiencing regular bouts of extremely low mood. These episodes would often take me by surprise and happen out of the blue. It meant that my work and general confidence and mood began to suffer as a result. The worst thing was that I had just started in a new NHS trust to try and leave my memories and undermined reputation behind. I really thought that if I stayed on the Yasmin until menopause, I would be sorted.

It was not to be however, and once again my ability to function both at home and at work took a nose dive. I regularly was to be found locked in the toilet trying to stop crying and pull myself together. I struggled terribly with the social aspect of the workplace terribly, with social and agoraphobic type symptoms, anxiety and paranoia. My sleep was awful and this just added to the struggle. I thought my colleagues must see me as jekyll and hyde, as my persona's varied so much from day to day, hour to hour.

On asking the GP if I could be referred to a gynecologist for my PMDD, she just replied "they won't do anything" and that was it...end of the road as far as she was concerned.
I was so desperate by this point after once again breaking down, unable to continue at work; that I went online and found a private menopause and PMS specialist in London...  Professor Studd.
I took the bull by the horns and rang and booked a consultation with him. In the end, I decided that it may be expensive, but without a job I wouldn't be able to afford anything so it was worth it.

The following month saw me heading up to London. I have to say it was the best decision I have ever made. For the first time I felt acknowledged and "normal."
He took a history and promised me that I would soon be feeling a lot better. I was prescribed oestrogen to boost my dwindling levels and suppress my cycle. I noticed the difference by the following morning...my mood felt boyant for the first time in ages. This incredible turnaround lasted a month or so, but then unfortunately my cycle kept breaking through leading to all the old unpleasant symptoms breaking through.

I went back up to see the Professor, and he clarified that my oestrogen levels were not high enough to suppress my cycle, so suggested an implant. I agreed to this and requested a mirena coil to provide the necessary opposing progesterone due to my intolerance issues. Unfortunately, I never benefitted from the increased oestrogen and gradually realized that this must be due to the mirena coil. Despite the progesterone level from the mirena being very small, it was having a very detrimental effect on me. I felt anxious all the time, slept poorly, felt flat in mood and had absolutely no libido whatsoever. I also bled continuously from the time it was put in.

During this time I was still off on long term sick from work, and the side effects from the mirena meant that I was not stable enough to build up the confidence necessary to get back. Consequently I ended up needing 5months off before I once again returned to my role. I decided to have the mirena removed and again almost overnight noticed the improvement in my mood and overall well being. However I was still suffering PMDD symptoms for all but about 5 days off the month. The most frustrating aspect of my PMDD is that I get two peaks of symptoms each month...once just after ovulation for about 24 hrs, then symptoms recede for up to a week and come on with avengance in the build up to my period. This just created havoc with my work life, and meant that I just used to pray that my days of worst symptoms would fall on my days off.

By now I realized that it was unrealistic for me to keep returning to London having to pay accommodation and transport, as well as the consultation fees. Again with no support from anyone except the fantastic forums I found on face book, I decided to ring the local private city hospital and ask them if they had a gynecologist or endocrinologist that specialized in PMS or menopause. Luckily they were able to suggest a female gynae that I could contact who had a clinic based in Truro Cornwall. So once again I was forced to go private to get the support I needed. I couldn't recommend Dr Gray highly enough though...she is so thorough and knowledgeable and took the time to explain everything to us clearly too.

So due to my progesterone intolerance and extreme sensitivity to fluctuations in oestrogen level, it became apparent that ovarian suppression with a GnRh analogue.
I therefore started ovarian suppression treatment with Zoladex which with add back oestrogen gel, finally effectively stabilized my PMDD symptoms. The plan was that if this worked then a referral for a full hysterectomy be made. The next challenge was to try and convince a surgeon on the NHS to take me on. This was the most stressful of times. It was so hard knowing what needed to happen for me to be able to carry on with my life successfully, but equally knowing that that it may not be possible to convince an NHS surgeon that My uterus would need to be removed Too due to the fact I am unable to tolerate progesterone. Thankfully Dr Gray was able to recommend a surgeon that she had known operate on a similar case previously. She sent a referral letter which my GP then forwarded on, and my anxious wait began.

Thankfully the referral was accepted, and I am due to have a full hysterectomy on April 19th.  Unfortunately the future of my career is hanging in the balance somewhat, as Despite hoping to carry on in post until my surgery; this was not possible. The Zoladex lost its effectiveness at suppressing my cycle after a couple of months, so PMDD was once again back in my life. A month before writing this, I had to give up my battle to keep going at work and once again had to go off sick. My sickness record is critical, my reputation tarnished and my professional confidence at an all time low. My work future following my hysterectomy is very uncertain, but at least bit by bit, without the presence of PMDD... I can start piecing my life back together.

Jane, UK.


Saturday, 10 May 2014

April, May....sun or showers... what’s it gonna be today? by Sarah *Guest Blog*

Interestingly, as I sit and type this, I wonder how many other women have gone to write something only to turn away from their keyboards for fear of recrimination in doing so.  Perhaps fear that wearing their heart on their sleeves will open up a whole hornets’ nest.    Fear of being judged by people who know little about PMDD but say a lot.  Fear of bosses who may think you are not capable of “doing the job”....after all there is a recession.  Fear of friends turning their backs or treating you differently.   Or perhaps it’s the fear of the real truth of PMDD, it’s symptoms and consequences.      In my life too... fear has a lot to answer for.

The biggest fear for me is Anger itself as this is my worst symptom of PMDD.  However, as we ride through each month, living with PMDD is different.  Like the changing of the weather, some months, it’s mostly dry with sunshine and just a sprinkling of showers.  But on others, it’s thunder and rain every day.

When PMDD really strikes me hard it’s bad.  A few days prior to it striking I am given a few warning ripples...I start by experiencing  memory loss.  I lack togetherness; my tolerance is lessened and I start to want to back off from the outside world (this is very hard with two children).   After 2 or 3 days of this behaviour IT Starts, it’s here.  Watch out; hide; take cover.     It’s like someone has injected me with a lethal dose of anger inducing drugs.  It’s like your worst nightmare because it is so so hard to control.  It takes over.  You feel bound.  You fight with all your might but it surges forth and it ALWAYS wins and since there is no cure, the only way forward is to ride the wave on a near hourly basis until calm restores itself, until the devil within quietens. 1 day, 3 days, 7 – who knows.   But the devil does go. 
The “you” does come back and I do my utter best to put right what my laser cut tongue has done wrong.
The problem with any mental dis..ease is, people don’t know what to say, how to react, how to help.   They can’t see the physical or mental symptoms from afar.  There are those that are your true friends and they are great.  They listen which is sometimes all you need.   Then there are those that think it’s all made up and we are just using it as an excuse to be angry or to get angry.  I wish I could lend my PMDD out sometimes..like a skin that can be worn, just for a few days to let others experience what it’s like.  But, unlike wearing a new warm coat, this outfit I’m afraid won’t make you feel so good. 
Funny that when I am out of my PMDD time zone, I feel strong, positive that it will be all alright.  I love life.  I love the birds and the trees and snuggling up with my husband and games with my children.     I love hearing their laughter.   But when I am in the midst of this ravaging thunderous storm each and every month, I could quite happily be led out to sea.  What brings me back I am not sure.  But, whatever it is I am merciful.

Next month I will touch on the subject of nutrition and heart coherence but until then, to all those that suffer, I am here with you and for you.  To all those on-lookers, I wish you sunshine and love in your soul.      Have a heart to ask, to care.

by Sarah UK.

Tuesday, 6 May 2014

My PMDD by Liz *Guest Blog*


My first experience of periods was a mild 'shock': what is happening to me?

As a teenager, I remember having to leave class sometimes because of the cramps, dizziness, migraine. I also remember feeling very tearful, and much more sensitive to rejection around certain times of the month.

At university I had boyfriends, and they commented that 'I definitely got PMS!'.  I can remember staying in my bedroom crying all evening on occasions, while my bemused boyfriend sat in the living room watching TV. After I finished my degree, I was on a progestogen-only pill at the time, I started charting my symptoms and self-diagnosed myself with PMS.

I started my first job and I was ok for another year or so, until I had another relationship and took a progestogen-only pill again. This one made me drowsy and depressed, and I lost my libido. My ex-boyfriend and I argued a lot when I had PMS. He didn't understand it made me dopey/scatty, and so got annoyed when things went wrong which weren't my fault, just misunderstandings on my part because i wasn't really 'with it'! After I came off that pill, my moods were worse again. I started developing 'monthly' depression and lots of other symptoms, including hot flashes during my period.

So I started seeing GP's and gynecologists, trying to get some help for the moods. A long road, since none of them seemed to understand that PMS could be that much of a problem, or would admit to me that contraceptive pills had side-effects! Because they didn't listen to me, it felt like a constant battle, not what you need when you feel low anyway! Sometimes you do really have to fight to get what you want, especially with poorly recognised conditions like PMDD. It is worth spending time looking for a sympathetic doctor though.

My main symptoms are anger, depression, fatigue, migraines, feeling overwhelmed, or uncomfortable & restless and unable to concentrate on anything. On top of all that, I feel quite lonely when I have PMS. It's hard to explain to people that you are feeling 'crap' because periods are a taboo subject, especially with most men. People think you are weird if you talk about your hormones, or call you a hypochondriac. So you feel shit but aren't allowed to talk about it with out risking a negative reaction. People are a stress-trigger, and so I am more wary of social situations when in PMDD phase, and so it's easier to distance yourself. But during my period is also when I feel most needy, I guess i want to be looked after and have the pain 'taken away'. I also crave affection more. So I feel torn between wanting to be around people but also feeling unsociable and ill.

In the past, PMDD has made relationships more difficult because of the mood swings, but I've been more depressed when I've been alone. A therapist said any illness can put you more in touch with subconscious feelings, and that the psychological defenses come down. So perhaps what I am feeling, isn't completely irrational or pointless. Even my mum said that PMS may make you 'overreact' but the trigger is still real. In the past i've spent too much time feeling guilty and apologising for my moods, when sometimes they may have been caused by other people's behaviour. I've blamed too much on my hormones (and therefore myself).

The reptilian/primitive part of the brain controls our basic emotions (love, hate, fear, lust). In experiments where people have to make a decision on a computer simulator and have had a brain scan at the same time, the unconscious parts of the brain make the decision, and the 'conscious/thinking part' of the brain lights up afterwards, giving us the illusion that it has made the decision. I think it's the same when you feel depressed, the 'thinking part' of your brain is looking for reasons for your bad mood. This may be why you blame people around you, or self-blame (depression). I don't think it's true for me that negative thoughts cause depression, negative thoughts may come from trying to rationalise my mood. Many illness's and drugs can cause 'biological' depression.

I was lucky to see Dr Panay,  to receive HRT treatment for PMDD, which hasn't cured my moods completely but I don't suffer from the suicidal lows that I used to. Although I took this in conjunction with seeing a psychotherapist and swimming regularly, which may have helped too. I used to think "why see a shrink for something biological?" But if you can afford it, it does help having someone to talk to. And the mind and body are not separate entities, they are linked.

Bad relationships, work stress and contraceptive pills have always made PMDD worse for me. And I've worked hard recently to rid my life of stressful people and to have more control over my life. The same with men. On the whole I feel positive and happy at the moment but the oestrogen implant will wear out of my system in 6 months time, so we will see. I stopped HRT treatment because I became intolerant to progesterone. I have already noticed my concentration dropping at work.

Given hormones aggravate other illness's and psychiatric disorders, it could be that PMDD just intensifies existing problems. Or it could be biological, or caused by lifestyle (not enough sunlight/diet/the contraceptive pill?). Perhaps it has many causes. Whatever the cause, it's extremely distressing and prevents some women from fully living their life. And it would be great if they did more research into it, especially as hormones play such a big part in our personality and behaviour.
Liz, UK.

Saturday, 29 March 2014

Lindsay's Story *Guest Blog*

I was diagnosed with PMDD just over a year ago. Over the years, my periods worsened and so did the PMT. I started my periods when I was 9, which of course is ridiculously young. My Mum was an early starter too, so it was inevitable that I would be.

When I was 24, I noticed that something wasn't quite right. I was snappy and took offence at the slightest little thing. My bosses would have a go at me over my attitude, and all I could do was say sorry.

When I came home from working abroad, I saw the nurse as I had lost a tremendous amount of weight, and they were concerned about me. As it turned out, physically I was very well indeed, and I commented to the nurse that I felt there was something seriously wrong. She didn't listen, and instead made me feel like a silly little girl and that it was all in my head.

I told my Mum my concerns and whilst she could sympathise, there was little she could do. Having suffered depression in the past, I can recognise signs of depression, but, this was something that I could not comprehend.

Over the years, I went from being weepy (you know like when you cry because there are no cheese and onion crisps in the cupboard!) to becoming nasty and violent. When I was ovulating and three days before my period, I became a monster. I distinctly remember it was the Queens Diamond Jubilee, and I was watching it on tv crying my eyes out and being very angry.

I took two diazepam to calm me down (which I was actually given for symptoms of irritable bowel syndrome believe it or not) alas, they didn't help, and made me so spaced out I couldn't talk or walk.

Another time I was talking to my boyfriend on the phone whilst he was at work. I was sat at the top of the stairs telling him I wanted to kill myself and crying so hard I was retching. My boyfriend stayed with me and managed to calm me down, but, it took a long time.

There have been more occasions of this nature, however, I am sure you can see the pattern emerging. Most recently, my boyfriend has had to restrain me so I wouldn't pick the knife up that I was trying to grab, as I was so utterly in despair that I wanted to end it all.

When I turned 27, things were only getting worse. I was alienating my family and my poor boyfriend didn't have a clue what version of Lindsay he was going to encounter when he saw me. As you can see from the picture, I am a generally happy person, but this thing was robbing me of my life and my relationship.

In a last ditch attempt to get some help, I went to see my GP. He was brilliant, and recognised that I did indeed need help. He prescribed Citalopram to be taken from day 15 to day 28, as a trial to see if this helped and immediately diagnosed PMDD. I realise that not all GP's are as helpful as mine is, however, if you are know something is wrong, please tell them. 

I have been on these tablets for approximately eight months now and, there is a difference. I do still have bad days, but, it does seem to be getting better. I suppose the purpose of me telling you this story, is, I don't want anyone to feel the way I did.

There is help out there, and PMDD is recognized as an illness, and not just something to be brushed aside, and dismissed as PMT. Please don't feel like you have anything to be ashamed of, you don't. I refuse to let this ruin my life and my relationship, and I really hope my story brings comfort and more importantly help.

Lindsay, UK x

If you would like to share your story, please contact Cat.

Friday, 28 March 2014

Mood Charts and Tracking Symptoms

(The following has been revised and updated from my original mood charts post)
What do you do if you think you have PMDD?  What if you've spotted the symptoms and a pattern, but your doctor doesn't know about PMDD or has never mentioned it?
The only way to convince anyone you are suffering from cyclical symptoms is by filling in a mood chart.

I say convince, as a lot of the time, the fear is that no one is going to believe you.  If you have suffered for many years, and no medical professional has ever asked you if there is a pattern, then how do YOU know better than your doctor?  Well, you DO know better than your doctor when it comes to symptoms, but short of your doctore living with your for a month, you have to be able to prove what is going on.  If you see a pattern forming, then all you have to do is get a mood chart filled out over 3 months, so you can SHOW your GP how it comes and goes.
By noting your symptoms and severity, along with your menstrual cycle, it is easier to see patterns forming and for doctors to diagnose PMDD.  No one can deny a set of painstakingly filled in mood charts that over 3 months, show a definite connnection to your menstrual cycle.

You have to be strict with yourself and make sure you do this EVERYDAY, or at the very least the morning after, trying to be as accurate about how you felt as possible.  Make notes of the boxes don't explain it well enough, or keep an 'emotions' diary and actually write small notes about your day.  That way you can often find and connect any outside influence triggers that increase the PMDD symptoms.
 There are many free resources online, including printable mood charts. Printable worked for me as I filled it in in the evening and could keep it safe, or up on the kitchen cupboard door to remind me. It also means you automatically have something to show your doctor.

I used the chart in the book by Diana Dell - The PMDD Phenomenom, as it gave me the option to fill in how bad things were too (by colouring 1, 2 or 3 boxes), so rather than just a yes or no, I could monitor slightly off moods to more intense, severe moods.  This book was the first book I read about PMDD.  I think it is out of print, but you may be able to find a second hand copy).  It's a good book, although may be a little dated now.  Having said that, little has changed since it was published.
Dont be put off by charts that are called Bi-polar or depression mood charts. It's not the name that matters, but the information you track. Just find a chart that works for you.
You may want to try an online/interactive mood charts. Some require membership, but some are free. If you are at the computer a lot, then this might be a better way for you to record you moods each day. Obviously this means making sure you can print everything out to take to the doctors, and that you will always have access to a computer to keep it updated. I can't stress the importance of filling everything in EVERYDAY for at least 3 months. It's the best way for an outsider to know whats been going on up in there, and help you to diagnose your condition.

There is a very modern way of tracking your moods, if you happen to be the proud owner of an iPhone or Smartphone! Just search the app store for 'mood tracker', 'iPeriod' or 'period tracker' and take your pick! I have used Period Tracker (paid version), and it's very simple to use. It's hard to find a tracker that does all the things you want, but it worked pretty good for me. I now have an android phone and am using Womanlog Pro, but there are many others, such as Ovuview, Pink Pad and My period and Ovulation. Most have free downloads, I advise you trial the free version before you pay for one, just to make sure it works for you.
As a side note, my husband downloaded an app called The PMS Alert  I tell him my first day of my period and he taps it into his phone.  He now gets a phone alert when I am entering into my pre menstrual phase, and it's pretty accurate.  It gives him a heads up without me having to say anything.  What I really need now is for one that alerts him to ovulation time, as that can be a challenging time for me to, but all in all, the The PMS Alert app has really helped.
With so many options, we are spoilt for choice! There is definately no excuse NOT to be tracking your moods and symptoms.... so, Get tracking!  I have included a few links, but there are many many more out there.  I hope to include a printable chart from this site in the near future.
Printable

Online
Mood Tracker - Free
NAPS Interactive Mood Chart - Free, membership required.
My Monthly Cycles - Paid subscription for good resources, Limited free account.


PMDD Symptom List

PMDD Symptom list - Diagnosis criteria

To be diagnosed with PMDD , a woman must suffer from at least four of the following 11 symptoms:
  • markedly depressed mood
  • marked anxiety or tension
  • persistent irritability or anger
  • difficulty in concentrating
  • decreased interest in usual activities
  • noticeable lack of energy
  • marked change in appetite
  • insomnia or hypersomnia
  • sense of being overwhelmed or out of control
  • sudden sadness or depression
  • physical symptoms such as joint pains, headaches, breast tenderness or "bloating."
The symptoms must occur a week before a menstrual cycle begins and disappear a few days after the menstrual cycle starts. The symptoms must recur in at least two consecutive menstrual cycles and must also "markedly interfere" with work, basic functioning or social relationships.

(Information from NAPS)

These are the most common PMS symptoms featured on the NHS website.  Women with PMDD often suffer from more than one of the following on top of the PMDD symptoms.

Physical PMS symptoms

  • fluid retention and feeling bloated
  • pain and discomfort in your abdomen (tummy)
  • headaches 
  • changes to your skin and hair
  • backache
  • muscle and joint pain
  • breast tenderness
  • insomnia (trouble sleeping)
  • dizziness
  • tiredness
  • nausea
  • weight gain (up to 1kg)

Psychological PMS symptoms

  • mood swings
  • feeling upset or emotional
  • feeling irritable or angry
  • depressed mood
  • crying and tearfulness
  • anxiety 
  • difficulty concentrating
  • confusion and forgetfulness
  • restlessness
  • decreased self-esteem

Behavioural PMS symptoms

  • loss of libido (loss of interest in sex)
  • appetite changes or food cravings

Any chronic (long-term) illnesses, such as asthma or migraine, may get worse.  This is called Pre Menstrual Exacerbation, PME.
As depression is a common symptom of PMDD, it is possible that a woman with PMDD may have thoughts about suicide.
PMDD can be particularly difficult to deal with because it can have a negative effect on your daily life and relationships. See your GP if you are experiencing severe symptoms.
Read more about treating PMS and PMDD (link takes you to NHS website).





PMDDAUK Closing

It is with sadness that I have to tell you that the PMDD Awareness UK website will be closing.  Other commitments and developments in my life means I can no longer maintain this website along with my other projects.

All donated stories will be re-published here over the coming weeks.  Thank you to everyone who helped, shared stories and supported this venture.  Hopefully we will see change for PMDD sufferers in the future.

I will continue to accept stories and publish them here, so feel free to get in touch if you'd like to share something via this blog.

If there is anything good about having to close down the site it's that I no longer suffer in the same way as I used to.  I have got my life back.  I am not cured or mood free, but I am persuing goals I never thought would happen, I am enjoying life, and more often happy than not.

I hope this can at least give others hope that life isn't over if you have PMDD.  Things change and no matter how awful things are, it's always worth the fight to keep going.

Thank you again to all who have supported me and PMDDAUK.  It may not have worked out, or lasted very long, but I tried.  Life changes, things move on, and all we can do is move with it.

With lots of love

Cat

To keep up with all my new projects, please visit my art website, www.chaoticat.com or Artist Facebook Page. xx


Thursday, 16 January 2014

How do you feel about being a woman?

Guest blogger Emma shares with us some thoughts about the bigger picture of PMDD.  First published in one of my support groups.. we all thought it too good not to share!

The fact is, I hate being a woman, always have, might always will. I hate it so much that for a brief moment years ago, I even contemplated turning into a man. I wished I had been born a man, because they have it so bloody easy, and I almost resent them for just being men and having it so easy. Women have so much to put up with in their lives, so much shit to have to go through. Not only do men have it easy, but they don't realise how easy they have it....I find that annoying too. 

I actually get quite envious of my husband because he has been able to live his life without any bother in the world. Everyday floats into the next. He can complete his projects, because he has mentally got the stamina and the motivation to do it. He puts his head on the pillow, and within seconds he is snoring, without a care in the world. Where as, as soon as I think I'm getting somewhere in life, (in my 2 weeks of feeling well) even if it's just getting into a routine with housework, or being able to get up in the morning feeling happy and joyful, something soon comes back and tells me I can't do it, and stops me from wanting to, and stops me from being able to. I have had a lifetime of feeling depressed, with tiny bits of happiness and glimpses of what life could be like if I was free to feel joy constantly, like my husband can.

Women throughout the ages have had it so hard. It has been a constant battle from the word dot (...or so it seems. It would be interesting to see at what point it was in our ancient past when being a women became in issue). Women have always been the ones who never had any rights, who were always disgraced if they stepped out of line. Who were, and still are, taken advantage of. Women have always been nothing more than objects for men to own. If a women fell pregnant out of wedlock, or had an affair whilst married and subsequently gave birth to a bastard child, society (mainly men) punished her, and she would live for ever more in disgrace. Often sent to the workhouses, and made to wear Black and Yellow striped uniform to warn everyone of their disgraceful behaviour, and having their children taken off them because they are classed as not being good enough to care for their children anymore due to their disgraceful behaviour.

Yet it is perfectly acceptable for men to have affairs, to 'spread their seed', to have their cake and eat it, and in some countries, have several wives!!! Why can't women be like that? Why can't women have several husbands? Men are classed as being a bit of a stud when he sleeps around. Yet women are labelled as whores. Why do we have to be the whores? Why do we have to have the crap end of the deal with everything?

Women were institutionalized in the olden days, because they were labelled insane, when really all that was wrong was a bit of PMT, or serious hormonal issues. Women's issues have always been a taboo, and women are looked down upon as the weaker sex. Menstruation is classed as dirty, and is seen as a 'problem', even an illness. 

Women were burnt at stakes, Drowned in the rivers, and hanged because they were supposedly witches.....Lordy knows, I would have been burnt a long time ago if these present days were anything like the past.
Even today, women are stoned to death because she is not allowed to have any feelings, or any rights for herself. She is still owned in some cultures, and women are still being sold as we speak, like objects. Families choosing who and when their daughters should marry. In some countries, as soon as a girl starts her periods, she is sold to a pedophile to get married. Girls even younger, 7 years old for god sake, are being sold for marriage to these sick bastards. Women are used and abused, because men think they can, and because they think they have a god given right to do as they please. 

But when anything comes down to blame, it's almost always the woman that takes it all, it's almost always the woman that looks bad. She is the one that has sinned, and not the man.

All the pain we have to go through, all the physical changes we have to put up with for the majority of our lives, the pain of child birth, the ever lasting damage it causes our bodies. And then there's all the household chores, and the fact that the woman has duties, to her husband, and her children.The physical abuse, the mental abuse, making the woman feel vulnerable and powerless.

My husband is amazing, and doesn't expect anything from me. But that's because he's my equal, and I just think I am lucky. Although I have had an idiot for a partner in my past, and I was lucky enough to see sense and get out while I could. Not before he created some damage though one way or another. I know so many men out there too who are complete twats to their wives, or girlfriends, because they believe that the woman's place is in the home, doing all their duties. 

I just wonder whether any of these issues affect other women, or is it just me? 
.....If we dislike being women, for what ever reason, then maybe we are unconsciously rejecting the natural changes that being a woman is all about....do you see what I mean?

I was told by someone last year that I will be coming into 'my power', but I never quite understood what was meant. I think I understand now. The power that was meant is the feminine power that we all hold within ourselves. The stuff we are made of, but which has been suppressed by men. If you think about it, with almost every species in the world, it is always the females that lead. She dominates the males to get what she wants. Ants, for example, get their wings in order to find a queen to mate with her. But as soon as he has mated, he dies, because he is no longer needed. The rest of the males are workers for the queen. You don't ever find a 'King Bee', only Queens, because she is the one with the greater strength to lead and carry on. 
We also have the strength to lead, and be great. We are built strong, so we can carry our babies and love them unconditionally. We have the strength to face the pain we endure during birth. I think we're all pretty much in agreement that men wouldn't stand a chance. They say that birth is the closest point to death a women will ever be (without dying of course), so we are built physically and mentally strong enough to be more than capable to do it over and over again. We have the power, but it has been suppressed for centuries. But now it's time to take it back.

I think I need to take back my power now. I did have a taste of it last year, and my Yoga helped a lot. I just need to believe in myself, and know that the power exists within me.

by Emma PF

Monday, 6 January 2014

Endorse me!

Hello there lovely readers!

I currently have 55 endorsements for the WEGO Health Activist Awards 2014.
There are 14 different awards and I have amazingly been nominated for FOUR!



Simply click THIS LINK! or the image above to go to my WEGO profile page.  When you click on the 'Endorse me' button, you can use a drop down menu in the form to endorse me for one, or all of the above nominations.  Once you've entered your details, you don't have to do it again for each one, just select a different award.

It would mean so much to win just one of these awards!  Share with your friends!

You can even endorse me more than once, in fact the limit is once per day!  The winners are notified in March, so there is plenty of time to get involved!
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