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National Association for Premenstrual Syndrome

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Jennie's Story

I started my periods at 9 years old and overnight turned into a monster. I told lies, stole money, shoplifted, made up stories and experienced my first visit to psychology. Throughout the years I have seen doctors, psychiatrists, neurologists and psychologists for my behaviour which no one could work out or give me a diagnosis for.
I spent my teenage years feeling “odd”. I didn’t fit in at school and fought with teachers and classmates. I didn’t know what was going on. I became promiscuous as I got older and behaved very strangely, but only sometimes. I started on the contraceptive pill and reacted very badly to it: all my symptoms increased ten fold so I stopped it immediately.
Still I didn’t have a diagnosis. I tried changing diet and not drinking alcohol or caffeine and it didn’t make a blind bit of difference. I got a Mirena coil put in but reacted to it too so had it removed soon after. I saw psychologists, psychiatrists and psychiatric nurses who thought I was depressed/attention seeking or just plain mad.
I felt very alone and scared and frightened that I was so mad no one could actually help me. It’s a very scary place to be in. Eventually I qualified as a nurse and got my first job. Again I struggled to fit in, I argued with managers and colleagues and just never progressed in the way that I had hoped. I had a terrible sick record but looking back it was only ever half the month that I took sick days. I moved from job to job over 10 years because of clashes with management and sick time.
Latterly, I suspected it had something to do with my hormones as it only happened 2 or 3 weeks out of 4, the rest of the time I was okay. I began charting my symptoms and found there was a very clear pattern. I suffered from bloating, tender breasts, low mood, compulsive spending, cravings for food and alcohol (I drink moderately ordinarily), tinnitus, fear, anxiety, palpitations, paranoia, social isolation, aggression, rage, major mood swings and more. There are more than 150 symptoms in all and I suffered from a large number of these.
My worst “episodes” were on day 13 and day 22 of a 28 day cycle. On these days I became a completely different person. I would drink recklessly, although not in any great quantity, and become aggressive and violent, towards others as well as myself. I slashed my arms and legs with a knife and threatened my partner with violence. (I NEVER self harm and struggle to understand it, I think I can deal with emotions verbally and don’t know where it came from). On at least 3 occasions I took an overdose and have had several stays in psychiatric hospitals. I have been rescued from rooftops, threatened police and been in trouble with friends and family on so many occasions.
It was as if I was possessed and for me the worst bit is I have no recollection of anything I have done. My partner, unfortunately, can remember everything.
This led several psychiatrists to try and pin dissociative disorders on me as well as bipolar disorder, borderline personality disorder and malingering. I didn’t buy it and I’m glad I didn’t!
In November 2008 my partner broke up with me after a particularly bad day when I tried to cut off my leg. I was in plaster at the time having had an operation for a bad ankle. He said he’d had enough and he couldn’t cope any more. I was devastated and went to my GP in floods of tears, not for the first time, and begged for help. He started me on Prozac straight away and within hours I was calm and determined to sort out this puzzling problem once and for all.
I turned to Google and stumbled across NAPS, The National Association for Premenstrual Syndrome. What a life saver! I found a group of women who suffered in the same way I did, although not always to the same extreme. They told me to get myself to a gynaecologist pronto for specialist help which I did.
After explaining to the consultant what had been happening, he said to me “it’s very clear that you are suffering from severe Premenstrual Syndrome or Premenstrual Dysphoric Disorder”.
He started me on treatment that very day. Within a month I was “cured”. I felt amazing. No hormones equals no problems. I had been given an ovulation suppression drug called Decapeptyl which essentially stopped my cycle. My partner rethought his decision to break up after seeing the change in me and we are still together and stronger than ever after nearly 13 years together.
Unfortunately with this treatment it is recommended that you take add back HRT. I was understandably wary of this because it meant putting in the very hormones we were stopping but I trusted my consultant. BIG MISTAKE! I reacted so badly to the HRT that I ended up being arrested for possession of a knife. I would never carry a knife. Again I have no recollection and to this day no one can tell me where the knife came from. I immediately stopped the HRT and felt better in a couple of days.
I spent the next 18 months going back and forward to court and eventually in March 2011 I was admonished. I now have a criminal record which will stay with me for life and it’s due to hormones.
Until that day, I had been a law abiding citizen who respected the police andthe rules of society. I have no idea what was going through my head as I can’t remember, but I do know that it was because of hormones, not my own, the HRT, but hormones nonetheless. Thankfully, my consultant agreed to forego any more experimentation with hormones and I became settled on a regime which kept me on an even keel every day of the month. I no longer had ANY of the symptoms I used to have and I didn’t drink recklessly, self harm or rage the way I used to. I felt great.
That was until September 2012. Due to the long term unopposed oestrogen I had been on, I had to have a biopsy of my womb and unfortunately I got the results back 7 weeks later and they weren’t good. It turns out that the fear of hyperplasia (the over growth of womb lining cells) had turned into a reality, but not only that, there was a chance that they were now cancerous as well. My consultant told me that the only way forward now was to stop my current treatment and go in for a total hysterectomy-uterus, ovaries, tubes and cervix, all of it had to go. What a shock!
The reason I think it hit me (and everyone around me) quite so badly is that my partner and I haven’t had children. I have always dreamed of being a mother and to have this taken away from me in this way was devastating. However, a few years ago, I came off treatment to try and conceive and all my PMDD symptoms rushed back and caused utter chaos again in my life. We agreed that I could only live if I was on treatment so accepted, at that time, that having children naturally wasn’t going to be an option. This made the decision to actually go ahead with the surgery a bit easier for me I have to say. Add to the fact that they are querying cancer and it was a no-brainer really. So I told the consultant that I was ready for surgery the day after the appointment and he emailed me that evening telling me he had provisionally booked me in for the 15th November, 2 weeks away! 2 weeks to accept what was happening, get organised and do it. Okay, let’s do it I thought.
 I had two choices: Curl up in a ball and ignore it all and hope it wasn’t happening or turn it into the most positive thing I had ever done. I chose the latter The womb of doom was out of here! That’s what I renamed my uterus, and the hangers on (the ovaries), had to go too. They had caused me nothing but grief since I was nine years old and it was time to say
‘Goodbye’
I spent the next 10 days cooking (to fill the freezer), tidying and cleaning and generally getting organised for when I came out of hospital. It felt good, it felt powerful, it felt like I was back in control. I printed off positive sayings and stuck them to the chest of drawers next to the bed so that I woke up feeling good. I went to the cinema and ate out with my partner and had fun whilst waiting to go into hospital. I ordered things online to make life easier while I was recovering. I went ten-pin bowling with friends and generally lived like I always did, with a smile on my face.
And I think it paid off. The operation went smoothly and I was home after 3 days positive and hopeful and looking forward to the future. Who knows what it holds? I got my results in a few weeks later and I was clear! I didn't have cancer.  I am now just over a year post op and have no regrets about it at all. Unfortunately it looks like I have been left with some nerve damage but we'll get that sorted soon. This saying keeps me going from Kiran Shaikh is “Never let go of Hope. One day you will see that it has all finally come together. What you have always wished for has finally come to be. Maybe not the way you had wanted. But even better than you could have imagined”.
My reason for sharing my story is because if someone had asked all those years ago how my cycle was or if I could chart my moods on a daily diary, then maybe I could have started treatment sooner and not wasted all those psychologists/psychiatrists/nurses time and ended up with a record for life.
I suffered from a severe form of premenstrual syndrome NOT an entirely psychiatric free form, but also NOT bipolar/borderline personality/dissociation and definitely not malingering. All it takes is one person to make the link between behaviour and hormones and you can change a woman’s life forever.
Please, if you know someone who has bizarre symptoms, ask yourself and then them, whether or not it could have ANYTHING to do with their periods. If there’s ANY doubt at all, get them to fill in a daily symptom chart. The pattern will be screamingly obvious if it’s to do with hormones.