Let’s Chat with Karissa
by Karissa Bourke
Brace yourself, this will be a long one! I like to talk and I’m an over-sharer!
My name is Karissa, I’m 25 and I’m a Registered Nurse in North Queensland. My role is a Theatre Nurse so I get to see a variety of surgeries including Endometriosis surgeries. I was formally diagnosed with Endometriosis in February of 2019. Let me tell you my story of how I got to my diagnosis and where I am now.
I still remember the very first day I got my period in Year 8. I distinctly remember having a ‘sore tummy’ all day at school. Thankfully, I was home before any bleeding happened. From that point on, I dreaded period week. It was 5-7 days of excruciating pain and bleeding through both a tampon and pad within two hours.
In my family, I am the youngest of four and have two older sisters. For all of us girls (Mum included), this was all “normal”. Mum had always experienced this and unfortunately, this is what periods were like. I also went to Catholic primary and high-schools so we all know how great the education around periods and sexual health were….
It wasn’t until the end of high-school that I remember having a conversation with a close friend about our periods. She told me she barely bled and only experienced mild cramps. Truthfully, I thought she was the strange one that had something wrong!
I don’t think I started tracking my periods until late in high-school when I found an app. But even then, I never looked or remembered when it was ‘due’, I just waited until I got some cramping and lower back pain and then I knew it was coming. Let’s just say, I had more than my fair share of ‘accidents’.
It wasn’t until I had graduated high-school and was in my first year of Nursing that I took myself to my GP to go on the oral contraceptive pill (OCP). Even on the pill, my periods were heavy, irregular and painful. Before going on the pill, I remember looking back at the app and noticing I would be anywhere from 2 days to 2 weeks late and it was never regular. I decided to start ‘skipping’ one of my periods, then two, then three in the hopes I would get some relief. Then I would break-through bleed (for those that don’t know or haven’t experienced ‘breakthrough’ bleeding, it is when you get spotting or bleeding at a time that you don’t expect your period). So I started doing ‘skip one period, have one period’. All of these made absolutely zero difference. I went back to my GP in my final year of uni and she told me that I was not able to skip any of my periods and it was bad for me. I obviously didn’t listen and tried to skip as many as possible and just deal with the break-through bleeding as it came.
Christmas Eve 2016, I packed up my life on the Sunshine Coast where I had lived for 5 and a half years to move back to my home town in North Queensland. This is where I met my now fiancé. I went to see my GP who had seen me my whole life prior to moving, about my painful, heavy and irregular periods. I ran her through my entire history and also the family history. She did some regular tests just to rule out anything else but little did I know, she already had a pretty good idea. After all my tests came back, she handed me a referral to a gynaecologist in my town and said “I think you have Endometriosis, good luck.”
I had a very slight understanding of Endometriosis. I had heard surgeons talk about it a couple of times while I was in Theatres at work but I hadn’t looked in to it or thought much about it. I booked my appointment with the gynaecologist and hoped it would be sorted very quickly. May I add, I also work with this person so I was very confident in them! When I finally got to my appointment, I once again ran through my history and my concerns. I left that appointment feeling pretty defeated and honestly, a bit stupid for thinking it was something more serious. I was told that there was nothing actually wrong with me and that the pain I’m experiencing is caused by “a buildup of protein caught in the loops of the bowel” and it would simply be fixed by drinking some Metamucil daily. So of course, I did exactly what this doctor told me to do. Surprise, surprise, no change.
I went back and explained that I had done exactly what they had said and wasn’t seeing any improvements. I was offered Buscopan for the pain. I didn’t go back to see that doctor for a while. After struggling for a little longer, before doing some of my own research. I decided that it WAS most likely I had Endometriosis and a Mirena would probably be a good fit for me.
I went back to my GP who agreed, but couldn’t fit the Mirena for me. I got a referral to the gynaecologist to have it fitted. I arrived at my appointment (thankfully with my partner) and they asked me when my last period was. I told them that it was 11 days “late” but that was exactly why I was here. I was then made to leave, go buy a pregnancy test, take said test and then come back. I ended up calling in sick to work for that afternoon because I had stressed myself out. The pregnancy test was obviously negative.
I was taken into a separate room for an ultrasound and for the Mirena to be fitted. On the ultrasound, they found a 5cm “hemorrhagic cyst” on my right ovary that was most likely from ovulation. I’ll spare you the details but fitting the Mirena was by far the most painful thing I’ve ever experienced in my life to date. I then heard the doctor say “oops!”. Oops! What do you mean oops!? Apparently, it had “fallen out”. They were going to make me leave my appointment to go and buy myself another Mirena. Look, at this point the red flags were flying high. Thankfully, they had found a spare one in the clinic and were able to fit that one and I was able to experience the torture all over again. That afternoon I struggled with some serious cramping. By the following day it had subsided. And for the next 3 months, it was wonderful! No pain, no bleeding, nothing!
Until Christmas Eve 2018 (of all days, really?), I laid on in our bedroom, curled up with cramping. I told my partner it would be fine and that it was just some cramps that would pass. This proceeded to intensify over the next few weeks. I was in buckling pain and I was distended and swollen. This pain would come hard and fast at any time of the day or night. It took me another month to be able to get an appointment with the gynaecologist. You can probably already guess how the appointment went….
They did another ultrasound to make sure it was in the correct position. It was. I asked if it was potentially that cyst on my right ovary rupturing. They said “what cyst?”. I felt so dumb but I now remind myself that I watched them measure it on the screen that day, so I didn’t just make it up. They basically told me they didn’t know what the problem was and if I didn’t like it, to take it out. I was again, disheartened.
I am beyond lucky to work in an environment surrounded by specialists. A new gynaecologist had just begun working with us and in passing, I asked how far out she is booked in her rooms. She asked me what my issues was and I told her not to worry and I would get myself a referral to come in see her in her clinic. She persisted and I told her what was happening. She spun around on the chair she was sitting on, looked me straight in the eyes and told me I needed to go to her clinic that afternoon.
So of course that’s what I did. I went through my entire history, my family history, what my GP had told me and my experience with the other specialist. She was shocked to say the least. She couldn’t believe that I had been struggling for over 10 years. She also agreed with my GP and thought it was highly likely I had Endometriosis. She also asked if anyone had ever done an ‘internal exam’. No, never. She told me that I have an ‘acutely retroverted uterus’ and its possible that the Mirena isn’t inserted to suit my body.
Within a fortnight (Feb 2019), I was on the operating table. I have seen women come in with similar stories to mine and unfortunately, there was no evidence of Endometriosis. I was nervous about that, I was nervous about surgery, I’m basically a nervous person. I am extremely fortunate to be able to know the entire team that was in my surgery, but it doesn’t make it any less nerve-racking. In the recovery room, my gynaecologist came to speak to me and told me there was Endometriosis. A huge feeling of relief washed over me, knowing it wasn’t “nothing”.
A few weeks later, I was still struggling with this pain I had before. I went to see the specialist who ruled it down to potentially my body having a reaction to the Mirena so we decided to remove it and go back to the pill. The day the Mirena was removed was the last day I had pain for 12 months! And the specialist told me that it most certainly IS fine to ‘skip’ periods. So that is what I did for the next few years.
When the pain started to creep back into my life around April 2020, my specialist and I decided to try Letrozole. Short and sweet, it wasn’t for me. After a lot of back and forth, a lot of questioning, asking for other opinions and a lot of self-doubt, I decided to have another excision surgery in September 2020. New spots of Endometriosis were found, some excised, some not depending on where they were.I went through some times where the pain increased again, but I felt like I was able to manage.
Around October 2021, I started to have breakthrough bleeding again. This unfortunately went on and off until December. On January 1st 2022, I decided to come off the pill for essentially the first since I was 17 years old and roll with the punches. I had already been thinking about this for over 12 months but have been too frightened about the pain and bleeding returning. So far, I have survived my first period (I feel like it’s absolutely a false sense of security) and have been managing pretty well since! (We won’t talk about the fact that I feel like I am a raging b*%$#.... that could have a number of causes though!)
In August 2021, after another long journey to diagnosis, I have been diagnosed with Psoriatic Arthritis in one of my ankles. That’s a wild story in itself.
If you suffer from Endometriosis, you may deal with some of the symptoms such as fatigue and nausea. I do! With the medications that I have to take for the arthritis, my nausea and fatigue have become worse than they were before. And some days it is extremely hard to be caring for other people when you feel so awful yourself.But like they say, I have survived 100% of my bad days!
2022 is a year that I have so much to look forward too! I’m finally making progress with my arthritis after nearly two years of pain and limited mobility (even if the medication is kicking my butt). And my partner and I get married in May!
I’m an over-thinker by nature and I notice that I can easily get caught up and brought down by my illnesses and how I’m feeling. I think it’s important to try to acknowledge your little milestones. They may not be very big, but acknowledge them! If you’re newly diagnosed, been diagnosed for a while or think you may have Endometriosis, trust. your. gut. Easier said than done, I know! I am completely aware that speaking up to a doctor is hard, especially when this is their specialty! This is what they do! But they don’t know your body like you do. If something does not feel right to you, then you need to speak up for yourself.
There is nothing wrong with a second opinion. That second opinion may tell you exactly the same thing, but at the very least for yourself, you know you covered all of your bases. And also remember, it may be the worst club but it has the best people! Look around the Endo community for support, advice and education!
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