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~Seek first to understand, then be understood~
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I have a "friend" who shows up once a month. She turns my world upside down, over and over again.
I am a good person, caring and sweet, but when she comes to visit, I could rip off your head.
She takes no prisoners, foul words she does spout, I try to keep the words in, she lets them come out.
People don't understand me, or what this is about, to have this creature inside my head.
I despise who I am, half of the time, I feel sorry for my daughter, family and friends.
There's no way to describe it, for those who don't know, it's a living nightmare, she really needs to go.
~Neysia Manor, Rest in Peace

Thursday, February 8, 2018

The Voices of PMDD - My Ten Year Struggle With PMDD

A guest post, written by a fellow PMDD blogger.

I was 20 years old when I knew things were not quite right. After suppressing my ovarian cycle for 3 months my symptoms were resolved and it was very clear I had a serious intolerance to my own hormones. I was told this is a complex situation that would disrupt my daily/monthly activities. What did this even mean? I struggled to understand this at such a young age, comparing my life (or lack of it) with my friends and those around me. I didn't even know it was called PMDD at this stage. I struggled to maintain relationships with family/friends, struggled to have a balance of life and each month was very much half lived. There were many dark days, spent alone hiding from the world. 
My GP at the time was completely ignorant to the severity of my symptoms, so much so that I started seeing a walk-in GP who has now become my main GP. He referred me to the PMS Clinic at Chelsea and Westminster Hospital in 2012- finally felt I was speaking with gynaecological doctors who understood and could help. I was excited to be cured and rid of this illness and I couldn't wait to finally start living a normal life. However, I was told there is no easy way to manage this and every case is individual, with a trial and adjusted medication plan. I went through rounds of Zoladex injections (surpressing my periods) and different doses of HRT to try control the PMDD. Zoladex was my saviour, ridding all my symptoms. The HRT gave me many side effects, but nothing was as bad as the PMDD. The doses of HRT had to be constantly adjusted, side effects become more unbearable and I decided to withdraw from the Zoladex and HRT in December 2013. It took about 8 months for my periods to return. Initially, things didn't seem so bad, but the hormones built up and the PMDD was back. I didn't quite know what to do and I was reluctant to go back on the Zoladex and HRT. I tried several contraceptive pills over a period of months, with no hope of control-august 2016. 
November 2016 to March 2017 was a blur, the PMDD was back. I was in denial, hiding the symptoms, struggling with work, found daily routines a strain and disengaged with activities. I avoided speaking to anyone about as I knew the only hope at this stage was to go back on the Zoladex and try other forms of HRT or I consider a Hysterectomy. I was 29 and couldn't quite understand how I was meant to make such life decisions. The questions of relationships, marriage and kids were always avoided. Eventually the PMDD became so overwhelming, I knew I was in trouble-emotionally I had entered a really dark place and the fear forced me to get help. I remember the walk to see my GP knowing he would take control and get me the help I needed. A couple of weeks later I was back at the PMS Clinic at Chel/West Hospital, on the Zoladex (suppression of my own hormones) and a different form of HRT. I was so anxious about taking this treatment again, but I had no choice. 
So where am I now? Life has been good since April 2017. I turned 30 years old in June 2017. I survived 10 years with PMDD!! I have learnt to appreciate the role of the medication and see how normal, balanced and full of life I can be when PMDD is not in control. Life feels new, exciting, opportunities seem possible and I feel so much love and happiness. I feel alive! I am able to forward plan and make commitments. I have also learnt to trust those around me - my friends have held me up during the most recent bad turn and reminded me of the person that I truly am. I never thought I would have such a strong circle around me and I cannot express how their energy and presence has been my saviour. For the first time in years I have been able to open up about my condition and my worries of the treatment and future. However, I still fear the future, the unknown impacts of the HRT. It is still a fight. I still worry about sharing all this with a man—will he ever accept me? what happens if I am taken off the medication? I want to get married, have kids and be happy. The difficulty lies in trying to achieve all this, whilst dealing with PMDD, taking medication that is variable and if it fails, the decision of having a Hysterectomy. It's a life changing decision, especially when you haven't had your own kids. 

I wrote this account for my fellow PMDD sufferers—you are not alone. The best advice I can give you is to find a GP who listens to you and lean on your friends when you are at your lowest point. Do not allow yourself to be alone. Do not hide or be ashamed. Face the PMDD head on. Those around you will make the decisions for you when you are not able to—trust in them. The other advice I can give you is to live life. Do not self hate. Make the most of the good days, rejoice in experiences, build relationships and laugh. Make the decisions that you need to, that best suit you and your life, so you can find a way of truly loving yourself.

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