Tri for Endometriosis - My story of my internal fight with Endometriosis and my love of Triathlon

June 11, 2014

By - Blythe Murphy

I have been told I am always happy and smile a lot. If only people knew what went on in my body and my mind to keep that smile there. 

Growing up I came from a family of 3 daughters; a mother; and grandmother that all had heavy periods. So this was what I was told was normal for me and it was also normal to start from an early age, so at the age of 11 I had my first period. I always remember it being a painful and heavy experience and as time went on it worsened and grew to being plagued with pain issues twice in each cycle, ovulation pain and period pain. All of this was a great way to avoid sport at school or any form of exercise really. Which in hindsight was not doing me any favours in the long run.

When I was in my late teens I had some other health issues that no one could diagnose and was labelled as having Chronic Fatigue Syndrome due to aches and pains, lethargy, fatigue and depression/moodiness. These things I just learnt to live with, I would watch out for signs of exhaustion and tried to make sure I looked after myself, even planned my life around my cycle, which was a very regular 28 day cycle and just trudged through it all. I learnt to self manage my moods and tried very hard not to lose friends or myself through my mood swings. Another side effect was that my weight forever just crept up and up. I really started to feel that this was not fair and not normal...

I have seen many doctors, specialists and even natural practitioners to try and feel what I thought should be normal. I have tried a lot of things like special diets and lots of medications. One of the treatments Doctors always tried with me was to put me on the pill saying it will help with your cycle, which made me laugh given my regularity. But they also promised less pain and bleeding. Alas, this is not something that I could turn to. I have tried over 15 different types of pill and each one of them sends me unhinged and messes with my moodiness and depression within hours of taking it, these have always made things worse for me not better.

Eleven Years ago, my husband and I were travelling through Africa on an extended holiday. We relaxed so much we came home pregnant with our first child. Now no child likes to hear they are an accident so although we did not plan this, we were over the moon happy with this little surprise. We didn’t know then that he was our little miracle and blessing.

Aiden was born in September 2003 and so began our little family of 3. My first period after Aiden came exactly 28 days after I had him and it was heavy, painful and each one after that became worse and worse. I was a new parent and we went through the usual sleepless nights and child related issues, Aiden had some severe food allergies and intolerances and my health pretty much took a back seat to being a mum. Once we had an understanding of food and other things that flared Aiden up with him at around 2yrs old we decided to start trying for another addition to the family.  

I kept all of my medical history in mind but had no diagnosis of anything being gynaecologically wrong with me as 'heavy periods and pain are normal for women'. This, teamed with the fact that we had no problems having our first child, made me think that having our second should be a piece of cake. Wrong. This never happened. What did was a very different life than my husband or I had planned on.

Three and a half years after we had Aiden, a year after trying for a second child and lots of pain and anguish later I was diagnosed with suspected Endometriosis. I underwent my first laparoscopy and was found to have stage 4 Endometriosis. It had fused my bowel, uterus and one ovary together. My Dr was not prepared for what he found and my body had not been prepped properly either so I found myself having to go back for a second Laparoscopy a month later. Mentally I was relieved to know that I wasn't a hypochondriac, however it was still a long time to recover from the operation and understanding what it meant for me long term. 

By 2008 we had had a miscarriage and I had had further endometriosis removed and it seemed that it had come back for the third time with the understanding that it was just going to keep coming back. Matt and I were given a couple of options around continuing to try for our second child but we made the decision that we had Aiden and we were very lucky. It was one of the hardest decisions of my life so far. It was time to concentrate on my health and not on trying to have another baby, which had consumed me for nearly 2 years. I was only 33 and not ready for a hysterectomy. Nor was my Doctor. So I had Uterine Ablation to stop the endometrium from shedding and therefore stopping the Endometriosis growing. However, it takes pregnancy off the table. This would be a 3-5 year period of relief. It was one of the best decisions I have made.

After the Endometriosis was under control further complications plagued me and I then found that I also was battling Polycystic Ovary Syndrome teamed with Rupturing Ovarian Cysts. This again was another low point 'When would it all end and seriously why me...' As time went on what confused me the most about having all of these conditions is that different treatments for one condition would counteract the other conditions. It was very frustrating and I worked out that it was not going to be a quick fix the next few years was like being on a see-saw - lots of ups and downs.

In 2011 after undergoing more surgery on my ovaries this time, I decided to try and get healthy sensibly through a balanced diet and work on my fitness. On our Honeymoon in 2001 Matt and I had watched a Triathlon and it was fascinating to me. I never thought I could do something like that but I always wanted to give it a go. I felt like I was always dealing with pain and was overweight at over 90kgs. How was I going to do a Triathlon? Well I worked it out through this little epiphany 'I could be in pain sitting on the couch putting more weight on or I could be in pain doing some exercise and trying to lose weight'. I signed up for my first mini triathlon. This triathlon would see me swim 300m, ride 9kms and run 3kms. I worked at it with lots of training sessions trying to get ready however 3 weeks out from this event I tore a calf muscle and wasn't allowed to compete.

Given what I had been through already, it would have been easy to give up but I found another similar event a few months later and competed then. I was so nervous about it all and very conscious that I was not as fit or fast as everyone else. Well I came last, dead last. I was so far behind everyone I had my own personal escort for the run to help me get across the line. I was very self conscious and a bit upset until I started to hear support from the crowd so I kept going. As I came up to the finish line everyone was cheering me on and Matt and Aiden were there. Aiden came and ran down the finisher chute with me, it was very emotional but I did it. I had completed my first triathlon.

Since then I have done a few more triathlons and I have gone up in distance to do Sprint level of 750 swim, 20km ride and 5km run. I slowly became faster but would still be at the end of the pack, I am not in it to win it I just like the fact that I am in there having a go. I have challenged myself and even worked to overcome my fear of deep water by doing ocean swim events, which is an awesome feeling. My little family all compete in triathlon now and have joined a fantastic Triathlon club in our area. It has been a massive life change for us and one we all enjoy. We also do fun run events together too. 'Go Team Murphy!' 

However, by Mid 2013 and a few more operations later, the pain started coming back. It took a bit of time to convince my specialist it was Endo again, given the last Laparoscopy in 2012 showed me to be Endometriosis free. During this time they diagnosed me with Adenomyosis (thickening of the uterus) and in December 2013 I underwent an operation to try and fix it. It didn't work and the pain increased. In March 2014 I had my 8th Laparoscopic operation since my first in 2006, my Dr was a little sceptical and the day of the operation I found myself having second thoughts that maybe it was all psychological and I was just imagining the pain now. 

As I woke up from my operation my rock, my husband, was there to greet me with a kiss and a smile. He had spoken to the Doctor after a 2 hour surgery where they removed extensive Endometriosis from my back ligaments, bowel and ureter; separated my ovaries from my uterus; removed a fibroid and cleared my uterus with another ablation to help stop any further growth for another 3-5 years. I was feeling relief and impatience to get on with a 'normal' life. 2 weeks later I took myself back to work only to collapse in a heap and have to be taken to hospital. I had formed an abscess in the pouch of Douglas and my pelvic area had become infected. 2 emergency hospital visits later and numerous visits with Doctors I prepared myself for a full abdominal hysterectomy. I know that a hysterectomy is not always the solution but due to the infection it was my only option to be able to clear up the infection and have a chance to stop the endometriosis from growing.

I did not come to this decision lightly. It had been a long time coming and I had hoped under better conditions but I know it is the right decision. I am now in recovery from my hysterectomy. It went well. Although I don't come out of anaesthesia well, my recovery has been good. I have had my stitches out and have been cleared to go back to work, which is great as this time with all of the previous complications I have been off work for 10 weeks. I am feeling stronger each day and have even managed some long walks to try and build my fitness back up slowly.

Through the past 6 months I have been doing a lot of soul searching and self talk to not let this get the better of me. (Yes I talk to myself a lot - Especially in a Triathlon). Now is the time to concentrate on my recovery. Once I get through this I'll move onto other goals - some of these are to finish a Half Marathon (21kms) and to get faster in my triathlons by my 40th birthday next year (2015).

It's been a rough 10 years with lots of ups and downs, the pain has been intense and seems to always find its way back. The hardest part has been the mental battles that rage in my head. I won't lie, sometimes I went to a very dark place and did not think I could find my way back. If it wasn't for the love and support from my husband, my son and my family and true friends I don't think I would be able to continue through this. It has also helped to have a supportive workplace and I have worked hard to progress my career throughout his time. I don't know if I am totally out of the woods but I am going to take each day as it comes and keep moving forward. What keeps me going is the goals and dreams of working towards new challenges. If I can get through all of these challenges, imagine what else I can do...

Here is the timeline of events...

2003 - Birth of baby boy; Aiden

2006 - Diagnosed with Endometriosis through 2 laparoscopies - 1st found Stage 4 Endometriosis, 2nd removed it; fell pregnant

2007 - Miscarriage; 3rd laparoscopy - further Endometriosis removal

2008 - 4th Laparoscopy; Uterine Ablation; Ovarian Cyst rupturing starts (around 6 month intervals)

2009 - PCOS diagnosed

2011 - 5th Laparoscopy; Ovarian Drilling and Fibroid removal; First Enticer distance Triathlon

2012 - 6th Laparoscopy - Endometriosis free - separation of organs from scar tissue and Fibroid removal; First Sprint Distance Triathlon

2013 - 7th Procedure; Adenomyosis Diagnosed - uterine embolisation

2014 - 8th Laparoscopy - Further Endometriosis removal; removal of a fibroid; separation of organs and uterine ablation - Subsequent Abscess and Infection from the surgery with over 2 weeks in hospital.

2014 -   9th Procedure - Total HYSTERECTOMY 

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