My Endometriosis story

Now your first thought is most likely what the heck is Endometriosis?!

Endometriosis or Endo is a condition in which affects one in 10 menstruating women. It is a condition in which tissue similar to that of endometrial tissue that typically is found within the uterus or womb and grows on the ovaries, bowels and has been known to grow in areas outside of this such as the lungs, liver and bladder.

Now with that in mind, there is currently no current known reason of what causes endometriosis. There are factors that are considered to be a cause such as genetics, hormones however there is no definite reason known as of yet.

There is also no cure, the closest thing that current medical treatment is other than pain relief management, hormonal control etc is surgery to remove/burn away the endo and try and provide the patient with a somewhat better life.

Now for my story – lets go right back to the beginning

As most women I began menstruating at 13, to be exact it was my 13th birthday, and I was meet with the shark week. Now I had some idea what to expect from a typical period and was somewhat prepared in terms of products and what not. However what I was not prepared for was the pain I experienced. I had severe cramps, nausea, fatigue and days where I was bedridden. As a young teen, I didn’t know who to talk to about this and just dealt with it and thought that it was just a typical period thing.

It wasn’t till about 16 when my symptoms got even worse, I had just been diagnosed with asthma a year prior and my lifestyle had changed massively as a result. Although there is no known link between exercise, endo and asthma. My days were spent either trying to push through classes with painful cramps that pain relief never touched, sitting in the bathroom vomiting my guts out and lying on the floor feeling like I was going to faint or sitting at home in tears in the bathroom, vomiting my guts out and trying to get up long enough for a hottie just to try and relief the symptoms for 5 minutes. I was in and out of hospital with needing oxygen and needing fluids and stronger pain relief. Many times over I was fobbed off for ‘having heavy periods’, ‘drug seeking’, ‘faking symptoms’ and many more. This threw me into a craze where I was beating myself up for having all these ‘fake symptoms’ and being a nuisance on the system.

Throughout these years and till now I have been on every single form of birth control available to females in New Zealand. Now that is not an achievement to me, it is and was a burden on my body. Initially the medication seems to be working and getting my periods better under control and then a few months down the tract, my period would come back hard and fast. The worst of them all was the jadelle. 2 rods inserted into your upper arm via a minor surgery, that release hormones every so often that is meant to stay in the body for 5 years. However for me, I had every single side effect listed; severe cramps, severe bleeding, having months without a period then having a period for 3 months consistently. This caused so much effect on my body and everyday life that I literally couldn’t survive some days that I got it removed. Since the removal I went through many further different types of of birth control, one of which I will discuss below.

Now this continued on until about 2016 when my mother went in for a hysterectomy and was diagnosed with endometriosis and adenomyosis. Due to post surgical complications she was staying in hospital for a week and I was there with her. During a terrible day of all the typical symptoms I had experienced the surgeon had happened to see me crying in pain hidden away from everyone and asked what was happening. He then realised that all my symptoms matched that of endometriosis. Suddenly my world changed, I began my research and realised that ALL of my symptoms matched and the things I was going through wasn’t normal, it was abnormal. I began my fighting journey to get diagnosed.

The diagnosis process – beginning to now

The first thing I did was visit my GP and ask for the tests listed to rule out anything else, this included iron, thyroid, kidney issues etc. These of course came back normal and my GP at the time just put it down to normal female issues and that it would eventually go away. I was initially discouraged knowing that what the Surgeon had said and clashing with my GP, I stopped my research and just dealt with the symptoms for another few months, Then after spending all day in bed in tears, hottie’s not being hot enough and barley being able to eat, drink or move without being in tears. I snapped. I went back and said what I have is not normal, I shouldn’t be bed bound with pain in tears and on pain relief that makes me sleepy and groggy, especially seeing as I had begun my studies towards becoming an RN. The doctor said that there was no way it could be endo at my young age and refused to do any further tests. I demanded a new doctor within the practice and refused to explain to anyone else other than that doctor why I had chosen to change.

This doctor was then the person that helped me step forward. She listened to my concerns, of course wanted to rule out anything else and when my results returned this time my iron levels were extremely low and she was concerned that everything else was normal. I was placed onto iron tabs and then sent for more tests such as an MRI, ultrasounds and multiple painful and terrible vaginal examinations that all came up with nothing. Now as mentioned above the only known way to diagnose and treat endo is through surgery. I was placed onto the public list with at least a 6 month wait to see a specialist and a 12 month wait for the surgery as it was classed as a elective surgery.

After waiting for 4 months and with no better way to manage my endo symptoms and pain I seeked a private specialist in the hopes to get bumped up the list. This is where I meet my surgeon. I went to visit Dr Digby Ngan Kee, there we discussed all of my symptoms and my journey so far and he basically said that it sounded exactly like endometriosis. I was placed further up the list for surgery and was placed onto the list if there was a last minute booking. During this wait I learnt as much as I could about the surgery, endo and the potential other complications that could occur. I attended multiple courses by Endometriosis NZ and gained some new friends and information that I needed. Although the wait was horrible I eventually got the great news I had been waiting for.

About 3 months after my appointment with Dr Ngan Kee, I got the phone call I had been waiting for. We have an opening and we can complete your surgery. I was ecstatic! Then the nerves, fear and the organization had begun. I had to organise time off work, get settled into my new job as an Residential Assistant and getting my support crew ready. Days leading up to surgery life was insane. I was working everyday right up till surgery, I was organising everything that I could, making sure to take some things with me and trying to settle the nerves. Then it was surgery day.

Now as someone that had never had surgery prior to this, it’s fair to say I was nervous about what I was going to do. I had read that the best thing to do prior to being nil by mouth for 24hrs was to have your favourite meal, mine of course was Maccas. I got the biggest meal I could manage and made sure that I got all my favourite things. I even had sour snakes late that night just before the time I was to stop eating. My mum stayed the night to whisk me away to the private hospital and time to get settled in. I was fortunate enough to get a private hospital of which was the flashiest thing I have ever seen. I had my own room, with a bathroom and a telli. All of which I was grateful for as it kept me distracted and meant that my support team aren’t left out in the cold while waiting for me.

Once all the pre-procedure stuff had been done, I was whipped into surgery an hour before expected. I can’t recall much after this point as my post-surgical response was compromised and a terrible experience. I can recall being told that they hadn’t managed to find any endo, just the scars of where they had once been. It was believed that this was due to the pill. I was left distraught afterwards and in severe pain. I was taken back to my room for recovery and unfortunately I wasn’t able to eat, drink or even empty my bladder without bleeding severely or vomiting everywhere. Eventually a decision was made to send me to the hospital as the nurses were concerned that my condition might deteriorate. There I had a catheter inserted, pain relief given and fluids pumped into me until I was able to eat at about 1am. And then from there I began to recover, although I was exhausted as though I had just completed a marathon. I finally got to go home and into my own bed. My partner was staying for a few days to be the support person I needed for the first few days post surgery.

Flash forward to November 2019 when my symptoms started returning, I was getting more tired more quickly, I was cramping and throw in the mood swings. It was while we were away in America that we soon found out that the mirena inserted during surgery had failed and I was pregnant but the same day I found out I was pregnant, I miscarried. This sent my world into disarray as we were on holiday and was ready for this step. Upon returning to New Zealand I visited my GP and explained to her what had happened in America and she was shocked, I was sent for a ultrasound, and it was found that my mirena that had been inserted a year prior had managed to wound up attached to my uterine wall. I was placed back onto the pill to prevent any further accidental pregnancies and awaited a specialist appointment in order to get it removed.

In November of this year (2020) I finally got an appointment to get the mirena removed and I now have noticed a reduction in my symptoms however new ones have popped up. Such as hot flushes and the odd sensitivity to certain foods (although this wasn’t a completely new symptom as I have had previous sensitivities).

So there it is. My endo story till today, and as we all know anything can change in a blink of an eye. And in that case I may keep updating this story and keep a record of my entire endo story.

Thanks for reading and if you are someone who can relate to my symptoms and story flick me a message on Instagram (@everydaymere) and I will support you and put you with those who have supported me.

Love Mere xx