“Betty’s” Story

Whose endometriosis story needs to dance across this stage? 

“Betty’s” Story

We are all shaped by defining moments in life, some of which are good and some of which are bad. 

The beginning of the first poignant moment that shaped my life was when I was 14 years old – when my parents divorced. This was the result of years of lies and cheating that was exposed. My father was a busy truck driver so having him not being a part of our everyday life from that year onwards was not a huge adjustment, but the fact that he never kept in contact with us for 5 years, was.

I thought I was dealing with the divorce fairly well.  I openly talked about it and sought counseling for how I was feeling.  Now, looking back, the reality is that I was not. I soon began to keep myself very busy, too busy.  Part of the reason for this was to numb my feelings and avoid facing the reality of the situation. I tried to be the strong and stable one for mum and the rest of my family. I was seeking affirmation at school and striving for acceptance from my teacher and coaches. 

My life hit a very fast downward spiral in August 2004.  At the age of 16, I hit rock bottom and had a mental breakdown.  My body, both physically and mentally, shut down, so much so that it was too hard to even talk and communicate to those around me. I had to take 3 months off school, drop subjects and stay at home. The reality of life was too much. I began to be suicidal and wanted to end my life.

I underwent seeing various doctors to get to the bottom of how I was feeling mentally along with problems I had been having with my bowel and seizures I’d had since childhood. I was diagnosed with irritable bowel syndrome and vaso-vagal seizures. 

Over the next 3 months I underwent a multitude of tests – not only physically – and I felt I was being tested within myself. Tested in a way of looking at myself, finding who I was and what I wanted in life…To live or to die. 

I never attempted anything to harm myself, but there was a constant battlefield in my mind that was crippling me daily. I had to start to re-shape my life, my mind and my body. I began to “tell myself the truth” and not listen to the lies and negative thoughts I was having. I used the Bible and scriptures to speak truth into my life; these scriptures soon began to heal me from the inside out.

My adjusted thinking, counseling and faith in God soon led me to a speedy recovery. So much so, that in 2005 I became Head Girl at my local school. I found a new confidence in myself and learned how to look after me: my own mental and physical wellbeing. 

You may wonder why I tell you about this part of my life. I tell you this because this defining moment shaped my teenage years. What I learned then helped get me through the next 4 years.

I was already on the contraceptive pill from age 13 due to having heavy periods, ovulating twice a month, and being anaemic on a monthly basis. As I look back now I thought that things got better, but the reality is, the pill was just hiding the real disease going on. Throughout the next 7 years of my life I experienced daily – back pain, headaches, bloating, constipation, fatigue, anemia…you name it I had it!!

I began to think that the way I was feeling was just the normal way of life! The constant fatigue dragged me down on a daily basis. I could not function as a ‘normal’ teenage girl. In a lot of ways, I felt I had lost my childhood – from a mental breakdown to constant period pain.

Later, when I was 20 I once again started to ovulate twice a month. I went to see my G.P. who knew my history. I mentioned to him the possibility that I may have endo. He quickly shrugged me off and said I was too young to have it. 

In 2008, my mother had a hysterectomy. During this procedure her surgeon found an endometrial cyst. My mother had a follow-up appointment during which the gynecologist asked her about her daughters’ health and if they had any problems. It was through that discussion that they realized I had ‘every symptom in the book’ of endometriosis. 

It wasn’t long before I was seeing a local gynecologist and having my initial consultation.  To cut a long story short, in July 2008 I under-went my first laparoscopic surgery. They found that I had severe endometriosis in four different areas of my body. 

The diagnosis gave me an answer to years of pain, an answer that I was relieved to finally get. I thought this was the end! No more pain, no more tiredness. Little did I know I was now on a new journey of discovery.

A lot did get better; my periods got lighter, but I still experienced pain. It was now pain that I could manage and handle. Then, when I married my husband in the end of 2008, I began to experience new pain. 

I began to experience pain during intercourse and constant problems with my bladder and bowel. I was prescribed numerous medications to help with the nerve ending pain/phantom pain that I experienced.  None of these worked. For one year I experienced this pain, trying to find answers and ways of helping myself. I began a gluten-free diet which helped with some of the bowel problems.

In July 2009 I had a Mirena IUD put in. This was my last option before more surgery to try and figure out what was going on! It was only after another 6 months of my body settling down that I began to get some sense of breakthrough. I began to stop ovulating, which was a good thing, and the monthly cycle of bowel problems, headaches, and fatigue slowly began to disappear.

I was prescribed some medication that finally started to work. So with the Mirena and right medication, things started to get better. I still needed to manage my bowel and bladder problems through diet, but they began to get easier.

In July 2010, I am now in a WHOLE new place. My pain is manageable in every area. I have learnt how to manage my life so that I can live healthily. It is important for me to try and balance my life with physical activity and healthy eating. In addition to this balance it has been important for me to keep creative.  Painting is a way for me to be able to express myself and how I am feeling.  In terms of managing endo, a lot is up to the individual and how you manage your life. It is hard!! But being able to go to a blank canvas and express myself…to let out anger, frustration, hurt and pain is a releasing way for me to be able to let go! I have felt that no one understands, so to be able to express myself and ‘get it out’ is a liberating experience!

I have also found that I need satisfaction in my daily life… job satisfaction is sooo, sooo important. I am now studying an arts degree and in many ways this has given me a whole new lease on life.

My faith in God has also been a HUGE part of who I am now and how I feel.  I have had constant faith and hope in Him that my pain will get better. When I have been weak, He has been my strength. 

 

 Week 1 i): Trees (1) and Week 1 (ii): Trees (2) 

   

Photograph 1: Trees (1)

Photograph 2: Trees (2)

Trees to me represent new life, they show a sense of strength and stability through their structure and form, but also hold a great amount of history. 

When you have been diagnosed with endometriosis you have a sense of new life, but there is the history in one’s life that needs to be unfolded for a improved life. I have painted these paintings out of an expression of the new life I now live, but also with the underlying hope that one day I will be able to conceive a new life of our own.  Knowing the history which I have had, it is a daily hope and faith that I hold onto.

 

Week 2: Steps, Steps, Steps  

 

 

 

 

 

 

 

 

Photograph 3: Steps, Steps, Steps

When you are diagnosed with endometrosis it is a journey which you go on to discover about the disease. You also learn a lot about yourself. This painting depicts the steps and stages of discovery of living with endometriosis and finding freedom in the disease. 

It is the positive day to day lifestyle decisions that you make that are the steps to living a great LIFE!!!

 

 

Week 3: Layers 

 

 

 

 

 

 

 

 

 

Photograph 4: Layers

This image depicts the layers of pain and grief that is beyond the surface of a person who suffers with endometriosis.

 

Week 4: Injustice   

 

 

 

 

 

 

 

Photograph 5: Injustice

This painting is dedicated to all those young girls out there who have experienced years of pain with endometrosis with no answers from doctors and a lack of parental support.  

 To all those times you have been told…It’s all in your head!!!

Well! “My mum had those problems so you will be fine!”…

It’s “just” period pain…we all get it…soldier on…

Your pain is normal?…

Staying home from school with period pain is normal…it’s ok…there would be nothing more wrong… 

Know that there is help and support out there! And there are people who DO understand !!!

 

Week 5: Bricks   

 

 

 

 

 

 

Photograph 6: Bricks

This art work depicts the bricks and weights that those that have endometriosis carry with them daily.

 

Week 6: Resting Place  

 

 

 

 

 

Photograph 7: Resting Place

Finding a resting place, in life. It is important to try and balance your life to remain healthy: mentally, physically and emotionally.

 

Week 7: Hope and Joy

 

 

 

 

 

Photograph 8: Hope and Joy

 

Finding bursts of hope and joy in daily life. 

 

Week 8: Lifting Your Eyes 

 

 

 

Photograph 9: Lifting Your Eyes

I lift my eyes to the hills where does my help come form? My help comes from the Lord who made heaven and earth.

– Psalm 121:1-2

 

When you look to a hill/ mountain, you need to lift your eyes and head up to view it. This is symbolic for the hills and mountain in our own lives which for me is my endometriosis, this hill can get the better of me each and everyday!  I need to daily try and lift my eyes above the hill. It is when I do this, my perspective changes and I find hope, faith and joy in God. 

 

 

 

Privacy Statement:    

All artwork/written material that appears on this page has been used with written permission from the project participant. A pseudonym has been used for the purpose of respecting privacy and maintaining anonymity.