The Good Fight - Stephanie's Endo Journey
By Stephanie Brankin
As I sit here I have to fast track back to when this all started, I was 11 years old. I can't remember where I was on the day that I got my first period but I remember I was so excited to finally tell my mum that I was beginning my journey to womanhood. The first few months were fine however, after about 6 months the pains started and I would have no idea that this was only just the beginning of a nightmare illness.
At first the pains were the normal throbbing, irritating pains that you would need a heat pack for and be fine but the pains intensified over the months which led me to go see my regular GP. My GP recommended that I go on the contraceptive pill, mind you I was only 12 and to me at that time the pill was something you take when you are sexually active and not wanting a baby so I freaked out. I was told that the pill would help me with my period pains and will help with how heavy my red river would get in the coming months.
It did nothing! I was passing out at school and shopping centers, it would make me get spotting and my period would pop up out of nowhere at the worst of times. Besides being able to control when I got the devils liquid the contraceptive pill did nothing. I then looked at different options to help me.
At 14 years of age I started having the Depo-Provera injections which stop your period 3 months at a time, it was an injection in my upper butt-cheek. This was my lifesaver for most of my teenage years as I could continue life without pain or anxiety from not knowing when it would arrive. For 4 years I would continue being on the Depo injection until I decided to stop, this is when things got crap!
My body had been on different contraceptives from when I was 11 years of age. That is 9 years of something in my body controlling how my lady organs work. At the time I was thinking about the present and how it affected me at that time in my life, it didn't even cross my mind on how this would affect me in the long run. My periods became so crazy, they were all over the place because my body was trying to get back to being normal. The pains though were out of this world! I was told by everyone around me that the pains were bad because I hadn't had a period in so long and that my body was holding years of periods and releasing them at random times which seemed so crazy to me and it didn't seem right. I had a feeling in my gut that told me something wasn't okay.
I ended up going back to my GP explaining everything as it was affecting my job, my love life, my family and affecting my time with friends. She said that I would have to get a set of tests as she though I may have something called Endometriosis. My mum sat in with me to this doctors appointment and when she said that my mum said that she had Endometriosis when she was younger as well. This resulted in me getting the tests that I needed such as a pap smear, internal ultrasound and a full blood count. Nothing showed any signs of Endometriosis but then again it is very rare for endo to show up on an ultrasound, surgery is how one knows they have it or not. Once these tests came back my GP sent a referral to a few hospitals around me which were Logan Hospital, QE2 and Gold Coast University Hospital.
After 7 months went by I heard from Logan Hospital but nothing from the others the letter said that I had an appointment with the gynaecologist. It was in this appointment that the gyno did a quick biopsy of my uterus and said I needed surgery so a date was booked. Fast tracked to 5 months later and I was having surgery for my first Laparoscopy. After surgery I was told they found a little bit of endometriosis and removed some of it, but it was on my bowel.
The next 3 months were good, hardly any pain and regular periods so I thought this was going well. But after that, it came back. And it came back worse. The pains were so bad I was passing out at work, I was throwing up from pain, I couldn't go to the toilet without being in pain and my periods were so heavy that no matter what I did, it would leak.
In 2016 I went back to my GP and explained how things had gotten worse, we went through the whole process of tests again and sent more referrals off, this time to hospitals all over Brisbane and the Gold Coast. Again, I only heard from Logan Hospital for a general gyno appointment. I attended the appointment with my partner only to be told they never removed the endometriosis because it was on my bowel and it was going to be a complex surgery. I was furious! This whole time I was thinking they had got rid of it when the truth was with every period since the first surgery it had grown more and more. The gyno also refused to operate because he said it would require a bowel surgeon and a gyno surgeon.
I gave up looking for work that year because I would always get fired from having days off due to pain. So I started studying a Diploma of Criminology and Criminal Justice which I loved however, a lot of the jobs involved in that area had long term careers, which didn't work for me as I wanted to be a parent soon and needed money. So I stopped studying and started looking for a job. It wasn't until January of this year (2018) that I got a full time job as a Service Delivery Officer at a apprenticeship center. I love this job, however I have been there 7 months and have had nearly a month and a half off all together due to my pains, they have been very supportive but it puts a lot of pressure on me to try and stabilise my pains to go to work and not let my team down.
2018 - This year has been crazy trying to get appointments to get another surgery because the truth was that the pain I have today is 100x worse then before I had surgery back in 2014. I have been taken to hospital via ambulance numerous times to only be given a whole heaps of pain medication and sent home. My doctor has sent a whole heap of referrals but i have not heard back from any of the hospitals until the 27th of August 2018 when I got admitted into Gold Coast University Hospital for extreme pain. This time it was different, this time it was a lot lower than it usually was and the pain was shooting down my leg and my back.
I got 3 morphine shots in my arm on the way to hospital but that didn't even touch the pain. Once I arrived at the hospital I threw up twice and waited to be seen. They admitted me into the short stay ward where I stayed overnight so that I could get an ultrasound the next morning.
On the ultrasound my endometriosis was very much visible, though it isn't common at all for endo to show up in a scan, but there it was on my bladder and my bowel. My ovaries were sticking to my pelvic wall and that would explain why I had the pains on either side of my lower stomach. The man that did my ultrasound said that I should be getting surgery as it is quiet bad and if I leave it to long it could cause extreme damage to my fertility.
I was happy. I was happy because I was finally getting the help I needed and doctors were starting to see that I wasn't lying. But my happiness came crumbling down when the doctor came back with a letter to my GP, he said to me "Your ultrasound has come back clear you just need to give this referral to your GP to get a referral to see our gynaecologist here or our endometriosis clinic" First of all, there is no endometriosis clinic at the hospital so he was incorrect and secondly the ultrasound was not clear, the radiographer had already told me everything. We went back and forth for a while to where they were ready to just send me home, but I wasn't leaving without some sort of solution.
The nurses came up to me saying how they hate that the doctors do not understand and treat us woman like we are lying about the pains thinking they are just period pains and nothing more. They explained Ryans Rule, this is where you get someone higher up to look at your case and reassess. Even with this the doctors told me it wasn't the hospital but it is just how the public system works.
At this point I was a mess, thinking no one was going to help me, my fertility was resting in the hands of people who didn't care. I was going to be shoved at the back of the line because they do not think this is important. I went on a rampage that day and sent an email to channel 7, channel 9 and courier mail explaining what my situation was and how crap the public system was. Courier mail got back to me and were interested in sharing my story. I explained everything to them and how the hospitals, doctors and sometimes nurses have all let me down.
My story was posted alongside other women's stories on September 19. I have had a call from the Gold Coast University Hospital Liaison officer who are wanting to now help as courier mail had gotten in touch with them. I will apparently get my first appointment within 42 days and will hopefully have surgery before the end of the year. With every new update I receive I will be writing about it.
For now though it is just a waiting game. I still have to live my life and push thorough the pain as much as I can. As I write this I have had another day off work because of pain, I don't even have my red river at the moment but my ovaries are killing me with shooting pains down my leg and back. Every day is different, everyday I am fighting something else whether it be my mental health, my endo pain or just stressed about other things happening in my personal life.
Endometriosis is not as recognised around the world as it should be. Women are being sent home after experiencing horrendous pain and feeling like no matter what they do nothing will get sorted. Women are losing jobs and relationships because people do not understand. Some women are ending their life because they don't want to fight anymore and don't want to be looked at like they lie or just want the pain medication. I am sick of being turned away and I have heard so many other women being turned away or laughed at or even abused by hospital staff because they thought the woman was being an attention seeker. It is ridiculous, I would love for more awareness and a cure if possible in the future!
I hope this helps other woman to share their story, try to get the public system to take women more seriously.
You can follow more of Steph's journey here: https://m.facebook.com/LifeOfAWomanEndometriosisWarrior/
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