An athlete with endometriosis 

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New Zealand cyclist Kirstie James is no stranger to success. The impressive athlete has competed internationally in the sports of cycling and rowing and earlier this year was named on the long list as a reserve for the New Zealand endurance track cycling team at the Rio Olympic Games.

However, she is also equally committed to succeeding outside of the sporting arena and is completing her Masters’ degree in Science, majoring in Psychology at Massey University.

Recent health issues saw both her personal and sporting worlds collide as she battled to deal with endometriosis. Kirstie shares her personal story in the hope of offering support and knowledge to others.

“I had what is known as endometriosis, an issue that is actually way more common than I even knew.

About one in 10 Kiwi women have it and it can be pretty darned painful, especially when you are riding bikes all the time.

My surgeon also found a cyst the size of a golf ball on one of my tubes which was not ideal, and it was removed at that time. I’m so lucky it was dealt with before it twisted or exploded as I could have lost an ovary.”

Kristy shares her story with Fitness Journal…

By Kristie James

“I hope this story can encourage an increase in awareness about women’s health and specifically about endometriosis.

I recently had a small surgery to determine if I had a disease called endometriosis.
The journey towards this surgery was an interesting one which started about four years ago while I was a rower.

During training for a big campaign I started to miss my cycles, sometimes I would miss the odd cycle, and then more and more I would miss my cycles for months on end.

I didn’t think too much of it as I was in a hard training block and the cycles that I did have were not too painful.

At the time my doctor and I thought it was due to having an energy intake which was too low for my energy output of rowing twice a day, six days a week. So I gradually increased my intake of carbohydrates and protein before and after training, and after a few months I was feeling much healthier. My cycle came back and I didn’t have any problems for about two and a half years.

More recently though, within the last year, I began to experience pain during my cycle. This seemed to get progressively worse and as the months wore on, I started to get pain the week before and after as well. Eventually I had less and less pain-free days in a month and I could not work out why.

As you can imagine, this was terribly frustrating to be in pain for no apparent reason and I couldn’t find a pattern to it.

Some days I would be pain-free and other days it was back. It was never agonising or debilitating pain, but just enough to be a hassle and the changes were so gradual over a long period of time, that I couldn’t remember what was ‘normal’ anymore.

Recently, for the last six months, I also began to experience a new stabbing pain on my right side only. Some days this would be fine, but other days it would feel like I was being stabbed with a knife.
I finally saw my sports doctor about it, and she rapidly referred me to a specialist gynaecologist. This story is about what I learned on my journey to diagnosing and treating endometriosis and a cyst that came with it.

What is endometriosis?
Endometriosis (also called ‘endo’) is a condition where tissue that is similar to the inside lining of the womb or uterus starts to be found in places that it was never designed to be. This tissue can be inflamed and red because it’s living somewhere that it shouldn’t, such as on the surface of the uterus, on the ovaries or on the fallopian tubes which ‘connect the two.

Also it can be found in the bowel, the membrane that lines the pelvic cavity and in rare cases, the cervix, bladder and a place called the Pouch of Douglas. The Pouch of Douglas is the area between the rectum and uterus. Endo can also grow into bumps and cysts in these areas and although it is painful and problematic, especially if it’s long-term, it is usually benign (not cancerous).

Who has endometriosis?
Endo is really common in New Zealand and around the world. In NZ in particular, the incidence (the rate of new cases diagnosed per year) is one in ten women aged 25-40. There may be a good chance that someone you know is affected.

At least 120,000 Kiwi women have it and about 176 million women worldwide. The actual number of cases could be much higher as there are many people who are never diagnosed.

But why is this?
Lack of diagnoses could be due to a number of reasons. It seems that many people do not know what endometriosis it is. I had never heard of it until recently.

After having my surgery, I asked the specialist why so few people are correctly diagnosed and his answer was that many health professionals are simply uneducated about the problem which is surprising as the condition is so common.

Another reason for misdiagnoses may be that some women may think or be told by their health professional that their symptoms are normal. This has happened to more than three women I know well that have had much more severe symptoms than me. They were told that they are ‘ovary-acting’, as we like to call it, or that it is just ‘part of being a woman’.

Endometriosis progresses with time so if left untreated the problems can increase. Additionally, I believe that misdiagnosis can also affect wellbeing.

If a woman has severe pain and is told that it is normal, it can make her feel as though she is not being taken seriously, or simply overreacting.

Because this problem is under-represented and causes pain that cannot be seen on scans or tests, it makes it invisible and creates a stigma of ‘crazy females’.

Many women, myself included, may be reluctant to admit that they are suffering.

One of my fears when talking to the doctor about it, and having the surgery, was that nothing would be found and maybe my pains were simply ‘normal’ and that I was just crazy and imagining these stabbing pains.

My mother was an example of misdiagnosis of endometriosis. She had extremely painful periods and heavy bleeding and was even hospitalised many times over six years due to excruciating pain.

Her GP at the time told her that what she was experiencing was normal, and that to soothe her symptoms she should simply go for more runs to get her fitness up and to take Evening Primrose oil. For years her GP brushed off the symptoms, making my mother feel like she was losing her mind.

Mum was fortunate enough to bear two children before infertility struck and then finally after almost begging for a referral to a gynaecologist, she was able to have a laparoscopic surgery where her endo was finally discovered. By then it was so severe that a hysterectomy (removal of the uterus) was the only option.

Her advice to women who may be concerned about their pain and reproductive health is to see a specialist as soon as possible and ask for a laparoscopy, as it is the only way to ascertain what is going on beneath the layers.

What are the symptoms?
Some of the symptoms of endo can be pretty nasty. The key one is dysmenorrhea – painful periods.
The tricky thing about this as a symptom is that pain can be totally normal and almost all females at some point will experience it during: ‘that time of the month’.

Eventually I was experiencing some sort of pain almost every day. This would often be abdominal or back pain that would sometimes extend to my glutes and hamstrings, especially when I was riding my bike.

One of the hardest things for me was that although I was in pain, it was not debilitating like the pain my friends and family experienced.  Even when it was at its worst I still managed to complete big blocks of training such as eight-week training camps that included four or five-hour training rides, high intensity track sessions, races, standing starts, maximal efforts in the gym and so on. I even managed to win medals.

I guess maybe that came down to either that my pain had become normal, I was just getting used to it, or maybe it was just sheer determination to push on, despite it.

In hindsight, it was probably a mixture of both. I was becoming fitter, faster and stronger, but at the same time, the pain was worsening.

This was a confusing time as I was torn between half thinking that something must be wrong with my body and the other half thinking that if I did have a problem with my health, then surely my cycling would not be improving. Surely if I wasn’t, it would slow me down.

There were a few other symptoms that I began to experience more in the last three months; bloating, pain when urinating, PMS, and sometimes fatigue which was another tricky one to understand.

Most of the time, I thought that if I was experiencing fatigue it was simply due to training full-time and putting in hours and hours every week on the bike. I was never sure if I was experiencing extra fatigue from an illness or not.

I guess I won’t know either until after I have recovered and get back into training.

By the time the symptoms got worse, I had read a fair bit about endo and I also began to ask friends what they had experienced. I found that there were many more symptoms I didn’t have. Some of these included: excessive or irregular bleeding; during (menorrhagia) or between periods (menometrorrhagia), recurrent urinary tract infections, nausea, vomiting, and diarrhoea or constipation.

I hadn’t experienced any of those symptoms and that made me question my condition even more. Can you have endo without all the symptoms? I didn’t know.

What I eventually discovered was that pain or other symptoms are not necessarily indicators of the stage of the condition. Apparently some women with endo have no pain at all. Some with mild endometriosis have extensive pain and other symptoms, while others with advanced endo may have very little pain. It is completely individual.

Lastly, my most recent symptom was probably the most telling and most worrying. The stabbing pain on the right side of the lower abdomen was motivation enough for me to get things checked out.

I had never felt this type of pain before, so it was then that I began to rethink my situation. The pain would come and go, some days I would be pain-free and other days it would be really sore, especially when combined with the back/abdomen pain.

For short instances I felt as though I was being stabbed in the belly and it was pretty uncomfortable. I knew that this pain was not normal and I asked my physio if I had possibly pulled a muscle or something in my hip or abs, but if I had, the pain would not come and go, it would have been more constant. My doctor immediately referred me to a specialist gynaecologist and it was all go from there.

The procedure
When I met with the gynaecologist we talked through my symptoms and the main risk factors of endo.
He asked a lot of questions and said that those who are most at risk were women that had never been pregnant before, were aged 25-40 years and had a family history of endometriosis.

I met all three risk factors due to my mother’s history. I was then given an ultrasound. I have to say, that exam was not the most pleasant experience I’ve had but it needed to be done. From what the specialist could see from the scan, everything looked normal. However, he knew that the only way to see endo is to perform a small surgery, a laparoscopy.

Following this consultation, I arranged to see the surgeon. My surgery was in the late afternoon and I was put under a general anaesthetic. The surgeon then inserted a laparoscope, a thin tube with a camera on it, in through a hole the surgeon made by my belly button. This videoed my insides which could be seen on a screen. Then my abdominal cavity was inflated with carbon dioxide gas to be able to see between structures and diagnose endometriosis.

Three more incisions were made in my lower abdomen and the surgeon used these holes to remove the damaged tissue with a laser. A golf ball- sized cyst that was attached to my fallopian tube was removed.

Lastly a Mirena was put in to stop the endo from progressing more. After the surgery was complete, I woke up feeling freezing cold. I was shivering all over my body and my teeth were chattering. Apparently that is normal for young people. My core temperature had dropped by about 0.5 degrees Celsius. They eventually warmed me up and gave me some pain killers. I went back to sleep and woke up the next morning feeling a little nauseous but other than that relatively okay.

Recovery
I stayed in bed almost the whole week after surgery. Week two I slowly got back into training starting with fifteen minutes at a time on the watt bike and progressing up to an hour. Following that I spent another week building up the volume and after week three I was back into normal training. A lot of the associated pain started to diminish and it was such a relief to be able to get back into training without any complications.

Update
Now I am eight weeks post-surgery and I’m feeling stronger every week. Right now I am in Canada helping the Paralympics New Zealand Cycling Team prepare for the Paralympic Games in Rio. See more on fb.com/kirstiejamescyclist

Advice
My advice to women is to find education, information and support from Endometriosis New Zealand: nzendo.org.nz. Endometriosis New Zealand is an organisation whose motto is ‘strength through support’. They aim to greatly improve health outcomes for girls and women services, programmes and advocacy.”

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