Hey,
It’s been awhile. 316 days to be exact but who’s counting..? Anyway, so much has happened and we have a lot to catch up on. First, there’s something that has been going on for a long time I’m going to tell you about…
So on the 11th of September 2019 I had my first surgery for endometriosis. Great birthday present am I right? But it has taken a very long time to get to this point of even knowing what is happening to me and having surgery to try to fix it.
I have always dealt with some sort of pain and a crappy immune system for as long as I can remember but for this specific pain; probably since I was about 12 so that’s 8 years of not knowing and for a lot of people it takes 8 years minimum to get diagnosed. I wasn’t actually diagnosed until I had the surgery so for about 9 months leading up to it, it was just suspected that that’s what could be going on with me. So I have been dealing with this, not knowing what this is and it progressively getting worse as I’ve gotten older and about two years ago is when it started to get really bad and I ended up having to put my life on hold just to deal with this.
I have been on birth control since I was 16 to try and regulate my periods, to try and help with the pain, and control how sick I would be every time because at this point I was starting to go home from school every day for at least a week every month because of how sick I felt and how much pain I was in. I never actually liked missing school (despite what some people may think), I don’t like missing out on things so when I started to miss school and my grades started suffering, my mum finally realised something was wrong.
The normal sugar pill didn’t really help at all and wasn’t working the way it was supposed to so after two years I went off it and I started to notice myself get really sick, not just physically but mentally as well. I was going through a lot with it being my last year of high school and not knowing what I was going to be doing afterwards, and just other personal things going on in my life. With my health getting worse it just made things ten times worse, so when I was 18 I decided to go on the depo jab, that worked for maybe the first month and then the pain really kicked up, my period was all over the show and in 2018 I was extremely sick, I was so worn down by what my body was going through, I was working all the time, I had the flu at one point which lasted for months, and my body just basically rejected the birth control and made me feel a lot worse than what I should. So, after a year of struggling, I decided to go off it in about October and it was either the best or worst thing I could have done. At the time I regretted it but now looking back on it, it’s what fully put this whole “getting better” thing in motion.
About a month after going off it, in November 2018 I became extremely sick, sicker than I’ve ever been before, for over 72 hours I couldn’t drink or eat anything without it coming back out because I was in the most intense pain (this wasn’t the first time this had happened but it definitely was the worst), I passed out three times within the space of a couple hours and was balling my eyes out to my mum at 2am begging for her to do something. We managed to get an emergency appointment to see my doctor the next day and he thought it could be my appendix so he sent me straight to the hospital where I waited three hours to see the emergency doctor. When I finally got to see her she basically criticised me, saying I was too small for my age, I need to eat more, work out more, all of the things I’ve been told before by so many other people, she didn’t think anything was wrong with me even though I told her about my history with pain and all of that. She just sent me home with a few days worth of meds saying it was just a bug and I would be fine if I just ate or drank something. I left so mad because I was so sick and tired of people saying there was nothing wrong with me when I knew something was going on. A week later I was the same, I could eat a little and had gone back to work but I was still in so much pain. So, I went back to my doctor like I had been doing every few weeks for the past year and a half, and I sat in his office balling my eyes out begging for him to help me. I had already been on so many different medications and had been through so many tests that I just needed something, anything to help me and he said that it’s finally time to look at this like it could be endo. He referred me to get an ultrasound and when that didn’t show anything I was referred by him and two other doctors to see a gynecologist to talk about having a surgery to see if they could find anything. I was supposed to be on a waiting list for 6 months and I was on it for 7 months but as soon as I saw her, things started to move quickly. She said that nine times out of ten it’s not endo and just bad period pain (little did she know I’m 1/10) but she would do the surgery anyway and back on a waiting list I went.
Not long after this I resigned from my job of two years because it was getting too much for me and I had no idea if I could carry on up until or after my surgery because I was so unsure of what was going to happen I had already cut back my hours and workload to try and cope but it didn’t really help since I was just getting worse anyway. I had bled every single day for 8 months straight, I was on a heavy amount of medication and strong hormone birth control for most of the year and having intense flare ups every other week and was always in pain. I had collapsed so many times at work and most of them none of my work mates knew about because I didn’t want to let anyone down and I hated feeling useless.
I had been on the waiting list for about a month before I got the call for my surgery (I cried a lot, because I just couldn’t believe it was finally happening). I got the call on the 10th of september and there was a cancellation so it was scheduled for the next day, I had to be there at 7am for pre op which normal people do a week or two before and I had to do it two hours before, I had less than 24 hours to get my ish together so I wouldn’t have to stress for my recovery. I didn’t even get to work my last shift.
My surgery showed that I do have endo and it had actually spread throughout my pelvic area which meant they took quite a big part of my lining as well as removing it from everywhere else they could find it, but surgery isn’t a cure. There is no cure for this, this is something I will be dealing with for the rest of my life and I will always be dealing with some sort of pain.
Nearly 4 months later and I’m still having intense flare ups, I’m trying to come off my medication, working on my mental health and guess what.. it’s hard! When you’re trying to recover from years worth of trauma that your body and mind has gone through it takes longer than a few weeks. Something I have to keep reminding myself.
This is a chronic illness and I don’t wish this on anyone. It is one of the toughest things I’ve ever had to go through (and I’ve been through a lot) but without it, I probably wouldn’t be the person I am today or have an appreciation for things the way I do know and knowing what I’m dealing with now means I can start to get my life back on track which I am so happy about and I’m actually really looking forward to and excited for life.
I still have a long road ahead of me but this is a part of who I am. In a lot of ways it makes me a stronger person, a better person. Of course there will be bad days but one day, there might be more good days than bad. One day someone will find a cure and this road will be a lot easier, not just for me, but for the other countless women who go through this. I have met some incredible and strong people from going through journey and without their support, I don’t know how I would’ve gotten through this.
Love always,
C x
Caroline Ann 