She is a parasite, taking over my body and my mind for 16-20 days of a month.
She is fuelled by my hormones, completely in charge. Taking away my identity. Robbing me of my life.
She is uncontrollable, angry, sad, feels hopeless, lethargic, unworthy, anxious, chronically fatigued, doesn't sleep, lacks any interest in activities and is completely disengaged from any social contact.
She is incredibly emotional-what does she have to be sad about?
She lashes out and makes you resent yourself after.
She gets inside your head, making you feel low, out of control and question your value in life.
She makes you hide, fearing how society and the world will accept you.
She clouds your brain, nothing seems straight forward or manageable.
She takes you to the most deepest and darkest parts of your mind.
She causes every sound to irritate you.
She causes physical changes; water retention, breast lumps, back pain, muscle ache, bad skin, appetite changes and a generally feeling you are not desired.
She is a demon, set in stone to disrupt.
Her strength is so powerful, continuing to take over your body and your mind.
You feel like a stranger in your own body - frozen by the affect of this parasite.
And then you bleed - the PMDD girl is gone.
You enjoy a few days, catch up with life, start feeling yourself, but its not long before she awakens.
PMDD girl is back, rising slowly and eventually throwing you into the deep end - all you can do is hang on, waiting for her to pass and aim to survive another month. Meanwhile you let life pass you by, too scared to let anyone know your affected.
PMDD girl gets stronger with every month. After all she is a parasite living in your body, feeding of your hormones.
How do I stop this PMDD girl living my life?
Finding the Balance - Learning to live with PMDD
I started this blog to share my journey with Premenstrual Dysphoric Disorder (PMDD) and build a community of support/knowledge.
Me and my PMDD - my journey
Me... and then my PMDD (my most personal account to date)
I was 20 years old when I knew things were not quite right. After trialling a 3 month course of Zoladex (suppression of my ovarian cycle) and confirmation that my symptoms were resolved, it became quite 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. Explaining things to those around me when I barely understood it or how it would continue to affect my future life, didn't help. 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.
Despite of this, I was fortunate enough to complete my degree and a Masters, whilst dealing with the battle of each month. 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 one of my trustworthy confidents and main GP doctor. He truly listened to my symptoms and referred me to Chelsea and Westminster Hospital PMS clinic in 2012- I finally felt I was speaking with specialist gynaecological doctors who understood me and could help. I was excited to think I would be cured and rid of this illness and I couldn't wait to finally start living a normal life. Much to my disappointment, 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 and different doses of HRT to try control the PMDD. Zoladex was my saviour, clearly the suppression of my own hormones rid all my symptoms. The HRT presented itself with a range of other side effects, but nothing was as bad as the PMDD. In this time I became passionate about teaching and completed my PGCE in Secondary Science (Chemistry) and finally felt I had a purpose in life. Things were definitely on the up, but of course it was never going to be so easy. 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. At first things didn't seem so bad, but then 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, as I just couldn't bare the side effects. After discussing things with my GP, I tried several contraceptive pills over a period of months, with no hope of control. We now reach August 2016.
November 2016 to March 2017 was a blur. I was in denial, hinding the symptoms, struggling with work, found daily routines a strain and disengaged with activities-I was fully aware I was losing control and the PMDD was taking over. I avoided speaking to anyone about it, thinking if I stayed quite the problem would just go away. I knew the only hope at this stage was to go back on the Zoladex and try other forms of HRT or I would have to start seriously considering 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 something I aimed to avoid-in essence to avoid any suffering for others around me. 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. All I wanted was to escape these physical and emotional symptoms, somehow to escape my own body. I remember the walk to see my GP knowing he would take control and get me the help I needed. He is the only person I can confide in and disclose the most darkest feelings. I think back to some of the things I must have said, how intense the PMDD can be. I saw it in his eyes, the sorrow of my struggle, my desire and need to fight, my love to live life, my pain and lost and my need to get help. A couple of weeks later I was back at the PMS Clinic at Chelsea and Westminster Hospital, on the Zoladex (suppression of my own hormones) and a different form of HRT (oestrogen and progesterone). Of course, I was anxious about taking this treatment again, but I also knew I cannot live a normal life without it. I haven't really detailed my emotional and physical experiences through the years, as these are still too difficult for me to share. I have learnt to accept my PMDD, know there is a boundary to what I can and cannot control, know that I have to make decisions to not let it control me.
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, stable 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 like the person I see looking in the mirror. I feel I have taken back control. The HRT is being monitored and I am yet to find out what the doses are in my body and the impact, if any, it is having on my womb/ovaries. 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 can never truly 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. They know share my highs and lows. However, I still fear the future, the unknown. 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 of the medication? I like most other women want to meet someone, be adored, fall in love, 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. Its a life changing decision, especially when you haven't had your own kids. I guess time is of the essence...
I wrote this account to allow those around me to understand the difficulties of this condition and for those of you women suffering to know 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 experiences, build relationships and laugh. Make the decisions that you need to so you can find a way of truly loving yourself.
Never give up - Stay strong - Be brave!
I thank my friends, my GP (Dr DL) and the team at Chelsea and Westminster PMS Clinic.
(August 2017)
I was 20 years old when I knew things were not quite right. After trialling a 3 month course of Zoladex (suppression of my ovarian cycle) and confirmation that my symptoms were resolved, it became quite 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. Explaining things to those around me when I barely understood it or how it would continue to affect my future life, didn't help. 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.
Despite of this, I was fortunate enough to complete my degree and a Masters, whilst dealing with the battle of each month. 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 one of my trustworthy confidents and main GP doctor. He truly listened to my symptoms and referred me to Chelsea and Westminster Hospital PMS clinic in 2012- I finally felt I was speaking with specialist gynaecological doctors who understood me and could help. I was excited to think I would be cured and rid of this illness and I couldn't wait to finally start living a normal life. Much to my disappointment, 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 and different doses of HRT to try control the PMDD. Zoladex was my saviour, clearly the suppression of my own hormones rid all my symptoms. The HRT presented itself with a range of other side effects, but nothing was as bad as the PMDD. In this time I became passionate about teaching and completed my PGCE in Secondary Science (Chemistry) and finally felt I had a purpose in life. Things were definitely on the up, but of course it was never going to be so easy. 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. At first things didn't seem so bad, but then 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, as I just couldn't bare the side effects. After discussing things with my GP, I tried several contraceptive pills over a period of months, with no hope of control. We now reach August 2016.
November 2016 to March 2017 was a blur. I was in denial, hinding the symptoms, struggling with work, found daily routines a strain and disengaged with activities-I was fully aware I was losing control and the PMDD was taking over. I avoided speaking to anyone about it, thinking if I stayed quite the problem would just go away. I knew the only hope at this stage was to go back on the Zoladex and try other forms of HRT or I would have to start seriously considering 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 something I aimed to avoid-in essence to avoid any suffering for others around me. 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. All I wanted was to escape these physical and emotional symptoms, somehow to escape my own body. I remember the walk to see my GP knowing he would take control and get me the help I needed. He is the only person I can confide in and disclose the most darkest feelings. I think back to some of the things I must have said, how intense the PMDD can be. I saw it in his eyes, the sorrow of my struggle, my desire and need to fight, my love to live life, my pain and lost and my need to get help. A couple of weeks later I was back at the PMS Clinic at Chelsea and Westminster Hospital, on the Zoladex (suppression of my own hormones) and a different form of HRT (oestrogen and progesterone). Of course, I was anxious about taking this treatment again, but I also knew I cannot live a normal life without it. I haven't really detailed my emotional and physical experiences through the years, as these are still too difficult for me to share. I have learnt to accept my PMDD, know there is a boundary to what I can and cannot control, know that I have to make decisions to not let it control me.
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, stable 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 like the person I see looking in the mirror. I feel I have taken back control. The HRT is being monitored and I am yet to find out what the doses are in my body and the impact, if any, it is having on my womb/ovaries. 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 can never truly 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. They know share my highs and lows. However, I still fear the future, the unknown. 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 of the medication? I like most other women want to meet someone, be adored, fall in love, 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. Its a life changing decision, especially when you haven't had your own kids. I guess time is of the essence...
I wrote this account to allow those around me to understand the difficulties of this condition and for those of you women suffering to know 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 experiences, build relationships and laugh. Make the decisions that you need to so you can find a way of truly loving yourself.
Never give up - Stay strong - Be brave!
I thank my friends, my GP (Dr DL) and the team at Chelsea and Westminster PMS Clinic.
(August 2017)
What is PMDD? - A non medical explanation
'PMDD - Premenstrual dysphoric disorder' - What is that?!
I always find this is such a big question. Mainly when confiding in someone new. How many times do you find yourself using the familiarity of 'PMS' to explain your PMDD? How many times do you find yourself lost for the right words or ashamed to really delve into the symptoms of this condition?
I am sure you can relate to some extent.
The answer to this question 'What is PMDD?' is not a easy one. Yes, we could list the symptoms, but we as suffers know it is far more than this. It is a cycle of highs and lows, which exhausts and rips through your daily life. You feel weak, not in control, helpless and completed cheated of life. You fight, promise yourself a stronger mind but it fights harder. You question why this has happened to you, what you did to deserve this struggle.
We all pray for hope.
Hoping the next month will be easier. Hoping the 'good days' will last longer.
We also fear the PMDD.
Can it get any worse? How can I continue with this chronic cloud over my brain? It just feels like a constant losing battle.
I always find this is such a big question. Mainly when confiding in someone new. How many times do you find yourself using the familiarity of 'PMS' to explain your PMDD? How many times do you find yourself lost for the right words or ashamed to really delve into the symptoms of this condition?
I am sure you can relate to some extent.
The answer to this question 'What is PMDD?' is not a easy one. Yes, we could list the symptoms, but we as suffers know it is far more than this. It is a cycle of highs and lows, which exhausts and rips through your daily life. You feel weak, not in control, helpless and completed cheated of life. You fight, promise yourself a stronger mind but it fights harder. You question why this has happened to you, what you did to deserve this struggle.
We all pray for hope.
Hoping the next month will be easier. Hoping the 'good days' will last longer.
We also fear the PMDD.
Can it get any worse? How can I continue with this chronic cloud over my brain? It just feels like a constant losing battle.
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Who is the PMDD girl?
She is a parasite, taking over my body and my mind for 16-20 days of a month. She is fuelled by my hormones, completely in charge. Taking ...