My Journey With Endometriosis
Long Story Short
It’s great to be feeling a bit better after having surgery on Tuesday. I had what is known as endometriosis, an issue that is actually way more common than I even knew. About 1/10 Kiwi ladies have it and it can be pretty darn painful. Especially when you are riding bikes all the time! Anyway. The surgeon also found a cyst the size of a golf ball on one of my tubes which was not ideal so it was removed within the same surgery. I’m so blessed that could be dealt with before it twisted or exploded as I could have lost an ovary if that was the case. Now I’m on the road to recovery for about a week or two until I get back on the bike. Thanks for being part of my journey!
For the full story, see below.
The Full Story – An Athlete with Endometriosis
I hope this story can encourage an increase awareness about women’s health and specifically about endometriosis.
Yesterday I 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. My doctor and I at the time thought it was due to having an energy intake which was too low for my energy output of rowing training twice per day, six days per 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 did not 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 pain seemed to get progressively worse and as the months wore on, then 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. I could not find a pattern to it, it just seemed random. Some days I would be pain free and other days in a lot more pain. It was never agonising or debilitating pain, it was just enough to be a hassle and the changes were so gradual over a long span of time, that I couldn’t remember what was ‘normal’ anymore.
Most recently, for the last six months, I also began to experience a new pain, a 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! This finally led me to see my sports doctor about it, and she rapidly referred me to a specialist gynaecologist. The rest of 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 (I call it
‘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 should not, such as on the surface of the uterus, on
the ovaries or on the Fallopian tubes which connect the two.
Additionally it can be found in the bowel, the membrane that lines the pelvic cavity and in more 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. A Scottish anatomist in 1715 named it after himself. Why you would want that particular area named after you, I am not sure! Anyway, 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. That means there may be a good chance that someone who you know
personally is affected. At least 120,000 Kiwi females have it and and
about 176 million women worldwide. That’s quite a few if you ask me! The
prevalence however, (the actual number of cases) could be much higher
as there are many people who are never diagnosed. But why is this so?
Lack of diagnoses could be due to many reasons. It appears firstly that many people do not know what endometriosis it is. I personally had never heard of it until recently. I asked the specialist after having my surgery why so few people are correctly diagnosed and his answer was that health professionals are simply uneducated about the problem. I was very surprised to hear that about a condition that 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. I have seen this scenario happen to more than three women who are close to me. Some of whom have had much more severe symptoms than I, only to be 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 this can increase the problem if it is left. Additionally, I believe that misdiagnosis can also effect well-being. If someone has severe pain and is told that it is normal, it can make them feel as though they are not being taken seriously, or that they are simply over-reacting. Because this problem is underrepresented and causes pain that can not be seen on scans or tests, it makes the disease invisible. This creates a stigma of ‘crazy females’. Many people, including myself, may be reluctant to admit any suffering.
One of my fears of talking to the doctor about it, and getting this surgery done, was that nothing would be found. My fear was that maybe my pains were simply ‘normal’ and that I was just crazy for feeling these stabbing pains. I had to remind myself that even if they found nothing, at least I could rule it out what the problem was not and have some sort of peace of mind.
An example of misdiagnosis of endometriosis was my mother. She had extremely painful periods and heavy bleeding and was even hospitalised multiple 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. My Mum was fortunate enough to bear two children before infertility struck and then finally after almost begging for a referral to a gynaecologist, my Mum 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 other 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’.
For me, I eventually was experiencing some sort of pain almost everyday. This pain would often be abdominal pain or back pain that would sometimes extend to my glutes and hamstrings, especially while I was riding my bike.
One of the hardest things for me I understand was that although I was in pain, it was not debilitating like the pain I had heard my friends and family members experienced. Even when my pain was at it’s 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 while experiencing pain. I guess maybe that came down to either that my pain had become normal – that 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 getting fitter, faster and stronger, but at the same time, the pain was worsening. This was a confusing time for me. 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 I would not be improving my cycling. I thought that surely if I was unwell, it would slow me down.
There were a few other symptoms that I began to experience more in the last three months; bloating, pain with urination, PMS, and sometimes fatigue. Fatigue 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 will not 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 did not 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 had not once experienced any of those symptoms and that made me question my condition even more. Could you have endo without all of the symptoms? I did not know.
What I eventually discovered was that pain or other symptoms are not necessarily indicators of the stage that the condition is. Some people with endo have no pain at all, apparently. 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, the most recent symptom that I got 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. This pain would come and go, some days I would be pain free and other days it would be really quite 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 in my mind that this pain was not normal. I talked to my physio to see if I had possibly pulled a muscle or something in my hip or abs, but I had not. If I had done that, the pain would not come and go, it would have been more constant. This lead me to see my doctor who promptly referred me to see a specialist gynaecologist and it was all go from there.
When I met with the
gynaecologist we talked through my symptoms and spoke about the main
risk factors of endo. He asked a lot of questions and identified those
who were most at risk had never been pregnant before, were aged 25-40
years old and had a family history of endometriosis. I met all three
risk factors due to my mother’s history. This meeting was shortly moved
to the examination room where an ultrasound was completed. 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, all was normal
from the scan. However, he knew that the only way to see endo is to look
inside by doing a small surgery, a laparoscopy.
Following this consultation, I booked in to see the surgeon. My surgery was in the late afternoon and I was put under a general anaesthetic by a specialist. The surgeon then inserted a laparoscope, a thin tube with a camera on it, in through a hole they made by my belly button. This videoed my insides which could be seen on a screen. Not by me, I was fast asleep, but by the surgeon and staff. Then my abdominal cavity was inflated with carbon dioxide gas to be able to see between structures and then be able to diagnose endometriosis. After finding the endo, during the same surgery, three more incisions we made in my lower abdomen. They used these holes to get other tools in to remove the damaged tissue with a laser. They also used these to remove the golf ball sized cyst that was attached to my fallopian tube. Lastly a Mirena was put in to stop the endo from progressing anymore. 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 which brought on the shiver. 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 ok. Since then I have been resting a lot and now the wait is on until I can ride my bike again!
Information for this blog post has been gathered from personal experience, experiences of friends and family and also these helpful websites:
This article is simply my own story. I am happy to answer questions about my own experience but I am not a medical professional, I can not provide advice. If you are seeking help, please contact you local general practitioner or medical professional.
Thanks for reading.