Tracey Jones

Living with endometriosis

The latest facts and figures about endometriosis.
·      1 in 10 women of reproductive age in the UK suffer from endometriosis.1
·      10% of women worldwide have endometriosis – that’s 176 million.1
·      The prevalence of endometriosis in women with infertility is as high as to 30–50%.2
·      Endometriosis is the second most common gynaecological condition in the UK.3
·      Endometriosis affects 1.5 million women in the UK, a similar number of women affected by diabetes.4
·      On average it takes 7.5 years from onset of symptoms to get a diagnosis.5
·      Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.6
·      The cause of endometriosis is unknown and there is no definite cure.

What it is:
Every month a woman’s body goes through hormonal changes. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilised egg. If pregnancy does not occur, this lining will break down and bleed – this is then released from the body as a period. 
In endometriosis, cells like the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.

Information taken from :

For me: I started my periods around the age of 14. The pain leading up to my period was unbearable, I would be doubled up and in agony for an average of one week a month and also mid cycle I would have constant pain. I assumed that this was normal and maybe I had a low pain threshold. It would affect all areas of life, some days I would be on the floor in the bathroom violently sick, on my hands and knees as I was in too much pain to stand.
At 16 I had my first key hole surgery. The consultant came to the ward the day after the operation and explained to me that I had Endometriosis and his advice to me was to have my children by the time I was 21. Endometriosis Is not life threatening but it’s known as an invisible disease, from the outside no one would know but the inside, there are many scars, having had 11 operations in total.
At the time I wasn’t in a secure enough relationship to start a family. Since then, an average of every couple of years the endometriosis would grow back and I would need key hole surgery to remove it. I spent most of my twenties on a hormone treatment called Danazol which often had an effect on a whole host of emotions, down to having the sweats, weight gain and being very up and down. Danazol would place the body in a menopausal state, so at 19 I remember sitting in work having full flushes with another lady who was actually going through the menopause. There was nearly 30 years difference in our age.

Anyone who has lived with endometriosis will understand the symptoms. For me, it was a sick feeling every day. The only way I can describe it, is that it is similar to someone coming out the tail end of a stomach bug when your tummy feels sore and yuck!!! The stomach-ache was dull, constant, and made me so tired along with a whole shot of other ailments – that was a good day!!! Often a bad day the pain would be unbearable. After a severe bought of pain, my hips would feel bruised for days and then extreme tiredness would kick in.

This is how I would be every day for an average of 9/18months before I would have the next key hole surgery to clear it and I would be fine for around 9months again. This cycle went on for the next 26years of my life. I had never known adult life without it. Unless you have lived with this disease its actually difficult to explain the other side effects.
Id often quietly go up to bed early in the evening and just have to sleep It off as it would be easier to do rather than stay awake.
I vividly remember a friend of mine had come over to get me as they were taking me out for dinner and to meet other friends for my birthday. He had to hold me up to walk into the restaurant, once we reached the door, I told him “I’ve got this” I didn’t show anyone that evening the pain I was in. I ate as much of my dinner as I could as I did not want to let my friends down and then disappeared into the restrooms to be sick. After I finished, I put my lipstick and smile back on and walked back into the restaurant where no one would have known any different.

I have spoken to many women who have done similar as they don’t want the sympathy or to be a burden to anyone. It’s easy to talk about it now as it’s all done and dusted and I now live a pain free life : )
When I was diagnosed with it in 1992 an average of 1 in a few hundred women were diagnosed, now we are 1 in 10 yet we are not much more advanced in finding a cure, except, In 2009 biological engineer Linda Griffith launched the Center for Gynepathology Research at the Massachusetts Institute of Technology.

Linda and her team study Endometriosis, and in 2013 they did a study which has Identified cellular activity that could provide a better understanding, it suggests that a faulty autoimmune response may be responsible for the condition.
This breakthrough means the team is one step closer to understanding why endometriosis happens in the first place and could in the future help device better treatment options for sufferers.

The picture above was taken December 2015 (I’m on the left). Two months before I was to receive my final operation – a hysterectomy. I had lost half my hair thickness was sick most days, nausea 90% of the time, was two stone lighter, could only eat small amounts of food, I would be in the toilet every 20minutes as my bladder was also affected. There was a whole host of other symptoms which I won’t go into in an article.

My consultant had said “It’s time to make you better” and I had no option but to receive the operation. I did ask him if I could firstly go to Milan for my 40th for a weekend which he smiled and then planned the Operation a week after my return.
One part of me was pleased and the other part was numb. I had to now really accept that the opportunity of carrying my own child was not meant to be. I celebrated my 40th birthday and a week later I spent 4 days in Hospital, I was opened from hip to hip as the Endometriosis had spread to large areas of the body and there was a lot of corrective surgery that they had to do.
I received the operation in Cyprus where I had amazing care. I asked friends not to visit me whilst I was in hospital, as I was determined to get my mindset right and wanted to focus on being strong throughout the recovery process.

I refused any more morphine 24 hours post-surgery and I asked them to de tube me the same time. I was so determined I walked out of the hospital 4 days later. I arrived back on camp (RAF Akrotiti) where I was living at the time, walked into the med centre to receive my meds. Even the doctor came out to the reception area in disbelief that I had walked in to collect my meds after being opened up from hip to hip.

The thing is after being in so much pain for years and continuing not to let it affect your life as much as you can, I was used to operations, and now I knew that there was not going to be any more pain and this was the start of a new chapter, I was actually happy. The pain post op was going to be short lived and that was an amazing feeling. My sister flew out to take care of me for the first week and then I was flown home by medair RAF where they had looked after me pre-flight, during the flight and post flight. I couldn’t have asked for better support.

I flew back to Cyprus after a month of recuperating at home in Wales and went to see my consultant for my 6-week post op consultation. One thing I had noticed was that I had lower back pain leading up to the operation and this had disappeared. I explained this to the consultant to which he replied: My dear, the Endometriosis had grown so much that it had gone around the base of your back-putting pressure on the internal organs and spine.

I should have been off work for 6/9 months and was back part time in 3 months, my doctor refused to sign my papers for me to return to full time work, which I suppose I was grateful for as I didn’t realise the aftermath of having such a large operation would have on the body. I didn’t need to prove anything else to myself, it was ok to take it easy and to be kind to me.
Two years before the above main picture was taken, I was about to receive my last round of fertility treatment. Myself and my husband went through 6 rounds in total and two rounds of Clomid, but my body kept rejecting each one.

As a consequence, my marriage broke down, due to me being so unhappy. When I look back at this time, I didn’t make very good choices, wasn’t really myself and was ill. My mind was sick and I hadn’t allowed myself time to grieve. I kept pushing the feelings away and kept telling myself there are a lot of people out there suffering a lot worse than me, be grateful for what you have rather than what you don’t have. Gratitude is a huge help, however what I hadn’t done was accept. Acceptance is as important as gratitude. I had to accept and forgive myself and I needed to grieve. It was a strange feeling having to grieve for each loss when there was nothing in the physical world to grieve for. However, we were told it would help us to accept.

I had come to realise that we sometimes need extra support and care to help us through difficult times in life and that’s ok. Living on RAF Akrotiri I received counselling from the military sector which had been a great support and the start of my healing process.
I also received alternative therapy with an amazing lady, who really did help me release my trauma. As a result of this support, something inside of me clicked, I began to learn, learn about me, learn who I really was. I began to immerse myself in personal development.

I discovered new tools, exercises and strategies that taught me to access my unconscious mind and reprogram the information that was stored. I retrained with some of the biggest trainers in the world and spent every possible minute I had immersing myself in learning. I would go to work in the day and read, watch you tube and travel to the UK during my holidays to train, I felt alive, I was beginning to learn some amazing tools that I could pass onto others. I was really learning so much about the human brain which was also supporting me through my healing process. I started to understand who I was.

I changed my blueprint and I can honestly say that I have reached 44 and I’m genuinely smiling form the inside. I am now internally happy and what I’ve become to learn this is where true happiness is built from. 

If you focus on the hurt, you will continue to suffer.
If you focus on the lesson, you will continue to grow.

 I now have complete inner peace. I no longer dwell on disappointments but instead channel this and find the positive. And more importantly I do not sweat the small stuff 🙂 I’ve become a lot more laid back and I’ve realised that there is so much to be grateful for.

My mantra: You can’t change what happens to you but you can change the way you feel about it.

I took on personal responsibility I pointed the finger back at myself. It wasn’t easy, it took time, it took COMPLETE DEDICATION. I immersed myself with between 2 and 8 hours a day of personal development for a number of years.
If I had learnt these tools going through school, I would have been able to have dealt with life’s challenges in a more resilient way.
One of my goals now is to challenge our system to give children these tools that they need to survive in life. Resilience is key to being able to deal with our curve balls.

I now speak at events and support other women by discussing how I kept my body strong when I had Endometriosis, the key was to keep a healthy diet and plenty of exercise. I kept process foods to a minimum, went out at 6.00am for daily walks. I remember seeing an acupuncturist and they said to me, how do you maintain a full-time job with this amount of pain? Answer: I was on autopilot; I didn’t know anything different. This was the 90’s before any understanding of the disease, I had already built a good system to support me.
What I also needed then was the tools to understand a healthy mind. This I have now and have supported many others to unlock this, build new habits and become stronger and more resilient.

I am a very driven person and throughout my twenties and thirties not many people looking from the outside would see anything, but internally the constant pain was difficult to live with. Keeping my body strong really worked but the missing link? Keeping the mind strong.

I now personally work on my mind as often as I eat and drink. We are told to eat healthily, drink often to nourish our bodies, we are told to exercise but how often are we told to look after our minds? What we put into our minds and the way we speak as a huge impact on our physiology. Going directly into the unconscious and rewriting how you think of yourself and your future is the key to permanent change.

I have been pain free for 4 years now. I was 14 when I first began to suffer with the intensity of pain, it’s an amazing feeling to now help others deal with this disease.

Life is extremely good, even though I didn’t become a mum, my life is now fulfilled with learning, helping and supporting others to learn the tools to keep their minds healthy.

If you have, or are suffering with an illness, please remember:

  • try not letting it define you
  • keep your body fit
  • cut out processed foods
  • walk, take in as much fresh air as you can
  • be grateful – practice gratitude
  • be kind to yourself
  • challenge negative inner dialogue

Most Importantly: keep your mind strong, spend time on this every day
and acknowledge that sometimes:
“its ok not to be ok, it’s what we do about it that matters” 

My learning’s from this, is to pass the gift forward.

Love always

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