As I type this, Frank (my right ovary; named after Frank Underwood from House of Cards – evil and destructive but has a good streak and is useful from time to time) is trying to kill me slowly. I have started my second period post op and it has brought with it all the pain it graced me with last time. Fortunately my strict regime of heat, analgesics and call the midwife is keeping both my pain and sanity in check.
It has been a while since my last post, which I am really sorry about; I have not forgotten it’s just that Christmas has been wonderfully busy and hectic. For the first Christmas in years I was actually able to celebrate and enjoy the festive season: I went to a few different Christmas parties, spent time with my family, went out for dinner a few times, I rang in the New Year at a lovely little pub surrounded by some wonderful friends and I enjoyed way too much food and a few drinks along the way. But alas the holidays are over and the diet begins.
So 2016 is here, a fresh new year that I am welcoming with more enthusiasm, excitement and hope than I ever thought possible. I have to say I am not really a big believer in the ‘New Year, New Me’ ideology. For me New Year’s Day has always been just another day, my cynicism the result of crushed hopes for a new beginning and the end of pain – but this year is different! I welcome a shiney new 2016. Over the last few months I have changed a lot as a person, grown comfortable in myself and made my peace with my endo demons. I am beginning 2016 happy with the young woman I have become and excited to see what challenges I will face over the next twelve months.
I owe my happiness to my inner sense of peace and contentment. During my endometriosis journey I have faced a lot of rejection, speculation, frustration, disapproval and judgement from medical professionals, colleagues and people I believed to be friends. As a result I felt a lot of anger, frustration and resentment. I carried these feelings with me everywhere I went, they weighted my shoulders down in everything I did. Before my diagnosis I thought if I finally found out what was wrong with me that I would feel validated and that would undo the anger I felt; a diagnosis would prove everyone wrong and I would be happy; yet when I was told I had endometriosis I did not feel better. I felt more anger, I felt wronged by the medical profession. How could they have got it so wrong? Why wasn’t it detected sooner? Why wasn’t anyone being held responsible for the years and years I had suffered? I wanted to call each consultant who told me it was all in my head, that I had IBS, that I was a drug addict, that I had a low pain threshold and tell them how wrong they were. I wanted to call up the people who had called me fickle, feckless and self-centred and tell them that I wasn’t being self-involved the whole time – I was trying to live with endometriosis.
These negative feelings consumed me and as cliché as it sounds they stopped me from being happy a lot of the time. The anger and resentment stopped me from acknowledging the good times, they stopped me enjoying my achievements, they stopped me from seeing the wood from the trees. The good times became all about proving the doctors wrong, about sticking it to all the people who doubted me, it became more important for me to prove myself to everyone else than to succeed for me.
If I am honest this anger also acted as a catalyst for the increasing self-pity I indulged myself in; I didn’t deserve the pain I experienced, I am a good person, everyone else my age had it so easy, I had to fight hard for everything I achieved, it wasn’t fair that I had endometriosis. I was reaching an age were friends were getting married, buying houses, getting promotions at work, establishing careers, enjoying holidays, having babies and I felt my life was stagnating. I didn’t have a career, I had to leave the one thing I knew I wanted to do and I had no idea what I would do in place of it. I wasn’t fit to be in work most of the time so a stable income on my part was non-existent. I thought I would never have the money to get married and buy a house, and the disease I was cursed with meant that I may never have a baby. I was caught in a bubble I wasn’t even aware I was in; my view of everything around me was distorted and twisted by the anger and pity which consumed me and I wasn’t even aware it was happening.
Last summer however things started to change. I had just been told I would need surgery again and went to visit my parents. My mum was furious about how I had been treated, she was frustrated that I was facing another surgery, she raged about how she wanted to write to each consultant and tell them how wrong they had been in my diagnoses, she wanted them to take responsibility, she wanted to right the wrongs of the past. I remember being so taken aback by her anger. I questioned mum on what she thought it would prove? What would it achieve? Would it actually change anything? Could she not see how holding on to the anger was causing her pain? Some of the consultants were even retired now so she would never be able to contact them anyway. Questioning my mum proved beneficial to me too, my internal monologue was answering the questions as I asked them. I saw a mirror reflection of my anger in my mother, I saw how it tainted how you see and interpret things, I saw how it blinkers your vision and I was shocked.
In an attempt to reassure mum and take away the anger she felt I began to frantically explain all the things I was grateful for, what I had learned from my experiences, why I am glad my life took all the crazy twists and turns that it did. Had I not have been through so many consultants I may not have come across the wonderful endometriosis specialist I am currently in the care of, instead I may have been treated by someone not as knowledgeable who may have done more damage by using out dated treatment methods. Had I been diagnosed before moving to Belfast I would never have come across the support group I attend in the City Hospital. Had I not found the support group I would not have access to such invaluable support and resources. I explained that despite all the complications I met a wonderful man who truly loves me. I have a wonderful group of understanding and supportive friends. I have an amazing second family in Chris’ family, who treated me as one of their own. I let mum know that although I needed another surgery I did see improvement from the previous one; I wasn’t on as much medication, I could walk without assistance and I was able to hold a job despite the pain. In the end I concluded to my mum that I was happy, I was lucky and despite all the trials and tribulations I wouldn’t change any of it – I am who I am, I am where I am because of everything I have been through.
My mum’s main retort was that I should do something to stop the same thing happening to other woman. I had to agree that she had a point, I didn’t want other woman to suffer what I had if there was a way around it. Now I have fought with politicians, doctors, nurses and board members during my battle with endometriosis. Each time I felt like I was banging my head of a brick wall; they were almost impossible to get in contact with (I am on first name bases with most off their secretaries), they didn’t listen to rational argument, they aren’t motivated by what is right or wrong but rather by finance, targets and KPI’s, and they all claim to hold no power or authority to do anything. Sending letters of I told you so, for me, wasn’t going to change anything. I was never going to prove them wrong, they would never accept fault, I wouldn’t get an apology and I am sure they wouldn’t change their practice methods. Maybe it is defeatist of me, but I made a conscious decision not to fight with the big boys, rather I decided to share my story and my experiences in an attempt to equip other woman with the tools to give them the power. From every appointment that went horribly wrong, from every miserable day, from every hospital visit, from living with endometriosis for thirteen years I have learned a lot (in fact I am still learning) and now I share what I learn with others.
That day I was liberated from my bubble, after that day I saw everything in a new light. I was able to see my achievements, I did things for me, I was motivated by my own happiness. I accepted the things I cannot change and adapted ways to make improvements when and where I could. It is redundant to obsess over things you cannot change. Nothing can re-write the past, you cannot change what has been…but…. what you can do is choose to see what good has come from a bad situation – there is always some good. What you can do is learn from previous experiences and adjust accordingly for next time a similar situation arises. What you can do is choose a different doctor. What you can do is celebrate your achievements and what makes you happy. Comparing yourself to others is a destructive path to take too, everyone has something going on in their lives – just because you can’t see it doesn’t mean they don’t have their demons. I know it’s easier said than done but take things at your own pace, do what is right for you and again celebrate the achievements that make you happy.
So now I start 2016 true inner happiness, I am bringing no anger or resentment into the New Year. I do not pity myself, I am bringing a new confident me. Over the last few months I have come to really see how lucky I am, I love my life and I wouldn’t change it. I am happy with the young woman I have become and look forward to the challenges I will face in the coming year, 2016 lets be having you! x
Mood management meds that wont anger Endometriosis!
don't let them brush you off!
Result! Hysterectomy is a go!!
Going for a second opinion? 
LET'S MEET UP 😊
