For me, finding out I had Endo was just confirmation to myself and my mum. As I’ve mentioned in my previous blogs, my mum has suffered Endo for as long as she can remember and has had countless appointments, surgeries, ect regarding it. This meant that ever since I had my first period and suffered the monthly pain, she had a feeling it would be that. Once I started getting flare ups and my irregular periods, she was sure of it. This meant that I knew from a young age I would have “Endometriosis”, did I know what that actually meant? Hell no. Did my mum even know entirely what Endo was even after everything she’s been through? No. Unless you actually look into it and research yourself, no one is really going to tell you just yet because it takes that person to do the same thing to ensure they know about the disease. I remember waking up from my surgery and my mum telling me, told you so.. they found Endometriosis. I went to the follow up appointment, I was told nothing other then yep we found Endo, we will need to keep on top of it. Off you go.
I had no idea what this actually meant! I knew of course it was likely I would need another surgery one day because I have seen that happening right in front of me for my whole life with my mum. Although, I honestly didn’t know what was actually happening to me and after being in pain almost instantly from my surgery I knew I really needed to look into this disease and work out what I could do to help. I had my surgeon wanting to put me on the Mirena, I had a second gynecologist wanting me to also put me on the Mirena.. I seriously knew I didn’t want to put this in my body but when I am being told by not just one person, it gets in your head! I made sure I stood my ground and gave myself some time to research the disease and take action with as many natural leads as I can before I was to even get put on any medications. Luckily, for me my journey started with essential oils. This really assisted me in the beginning with just getting a feel for being in touch with myself and what my body needs. I then got to meet so many lovely people and attended my first ever Endometriosis awareness event which was AMAZING. This is where I got to meet for the first time Amanda who is a women’s health acupuncturist and Chinese medicine doctor from Angea women’s health clinic. She is so bloody knowledgeable and has taught me so much about my cycle, my diagnosis and literally my life in general. I have only done a few sessions and honestly can see such a difference in my cycle after seeing Amanda. Each appointment I have done acupuncture, cupping and went through a month of herbs that she recommended. I have still got my daily constant pain but my blood flow and sciatica is SO much better. I have been sick, slack and really busy lately but I am 1000% making this a monthly appointment that I need to attend. My recommendations for when you first get diagnosed with any chronic illness, not just Endometriosis, would be seriously research the heck out of it. I still spend my nights searching the web, asking questions, watching videos just so I can find out what exactly it is and also just everyones opinions on the disease. Next, make sure you are totally comfortable with your support group. I have an amazing GP who I love (she’s hard to get in with but she’s 100% worth it), I know she will listen to me and I know she genuinely wants what’s best for me. I now have Amanda that I know is so passionate for what she does, she knows her stuff and wants to spread as much awareness about it as she can. I have my pelvic floor specialist Melissa who is amazing and is so knowledgeable! I literally have emailed her randomly just asking for help and she was honestly more than happy to help the sooky client who thought her life was over lol. I also have obviously my amazing family and friends to support me aswell. I then would look into the natural ways to heal yourself. Such as food; this may be a trigger for you. I am currently in the process of testing and then eliminating or replacing what I can. It’s hard but I have already been able to replace a few things that have helped so much and I would never go back! Then try the acupuncture, cupping, seeing a pelvic floor specialist, yoga, ect.. Endometriosis still blows my mind, don’t get me wrong I think I know so much about it them BAM something happens or comes out and I am right back at the start.. I just want to be able to share my experiences and my knowledge on the disease and any tips I have that can hopefully help at least one person who is going through this and may have been recently diagnosed. I was going to start from when I woke up but I changed my mind.. let’s start from the 3am wake ups from pains shooting down my legs and through my stomach. Then again at 4:15am and again at 5am then waking up when my partner leaves for work at 6am and trying to sneak in as many seconds of sleep as I can before needing to get up at 6:45am which normally is post-poned because I’m so tired from such a broken sleep. Imagine the first thing you need to think about or deal with when waking up is deciding whether it’s just nausea or you’re actually going to vomit. Waking straight up to pains you feel you never escaped from, pains so sharp it feels like a knife is being pushed against your tissue on the inside of you’re stomach. Standing up for the first time of the day feels like you’ve had your stomach stitched to your hips and your breaking them apart by standing up straight. Walking and thinking you’re about to collapse because you’re so light headed. It already sounds pretty traumatising doesn’t it? This is just the start of my day.
From here I need to try and go on with my day like I’m normal, like nothing is attacking my insides. This past month has been the worst I’ve ever suffered with my endo, so this “day in the life” has been my every day for a month but for the past 5 months was just randomly but always the week before my period and the week of. There’s some days where I wake up and honestly can not move, I can’t bring myself to even get out of bed let alone actually go to work. This is so hard for me, I love my job. I love what I do and the people I work with so I already know this is a huge problem but when I wake up like this there is no changing my mind. Nothing that can stop me and normally when I actually stand up it literally makes it so much worse and just confirms it. BUT on days I am able to actually get up and keeping moving on, I have to deal with stuffy trains which bring out my morning nausea so much more and majority of my mornings are me tossing if it’s bad enough for me to actually get off the train for some air and then carry on with my journey when I can. When I’m at work I’m constantly up and down and always feel the ripping of the stitches feeling and sharp pains. Dizziness, shaky, I can’t sit on my chair without it feeling like there’s a pin in my seat stabbing straight into my ass from my sciatica and it shoots straight down my leg, my back being in excruciating pain and mainly me constantly being breath-taken by how much pain I’m in. There’s obviously days that are much better then others but flare up days or this past month for example this is every. single. day. Do people believe me? Probably not. I probably wouldn’t either if I had never been in this position or knew many people in my position. I am constantly told I’ve always got a huge smile on my face and the typical but “you don’t look sick”... which is correct! But if you’re suffering like this every day I’m not going to walk around crying because then well.. endo will win (and that isn't happening). Endometriosis is commonly known as an “inflammatory disease”, it is when the tissue that normally lines the uterus grows in places outside of the uterus. Did you know a laparospic surgery is 7-8 times more risky then any other surgery; Some people suffering with the disease have 10+ of these surgeries, my mum included. Did you also know that Endometriosis was named in the top 20 most painful diseases, so is sciatica and migraines which are two of my main symptoms of endo. Yet still 20% of the population haven’t even heard of the name! Endo effects 1 in 10 women, that is the same odds as asthma and diabetes but again... it is not spoken about nor do people know exactly what endo actually is. This month is Endometriosis awareness month. Spread the word x Yes I have Endometriosis!
Endo currently affects 1 in 10 women in Australia. It is a generic disease. Studies show up to 68% of women are misdiagnosed with another condition for years before even the word endometriosis comes into the picture. It has been proven that the 50% of GP’s that know nothing about endo misdiagnose all these women (including myself) with things such as just bad periods, chronic fatigue, kidney problems, gastro, appendicitis, constipation (the list goes on honestly). Sometimes it can be more then 10 years before a women is officially diagnosed with endo, I’m lucky it was only 5-6 for me (although I’ve known forever that’s what I have). I’m lucky going through this adventure that I’ve had my mum, she also has endometriosis; she has had approx 12 surgeries, 3 hysterectomies (they couldn’t get it right the first time.. or second!) and is still suffering from the chronic illness. Ever since I started menstruating I think I’ve probably had maybe one non-painful period which was my first ever one, my mum has always told me “this is exactly what I went through”, “I know this pain” and “I feel exactly the same” but even after basically telling every single doctor, specialist or gynaecologist that I’ve seen they have always pushed the word endo away from me and diagnosed me with something else or otherwise just told me it was in my head. I have been told more times then I can count that I’m "to young for endo" and it’s just painful periods which is apart of my life and that I can do nothing about it. Remember all of them misdiagnosis' I mentioned above? Every single one of them I’ve heard and been “diagnosed” with and I’m only 20. I remember like it was yesterday the first really bad episode/flare up I had, I was rushed to the hospital to get my appendix out to only get an ultra sound that showed my appendix was fine, given some strong pain killers and was sent on my way. I’ve been sent to specialists to deal with constipation, sent for probably more then 10 scans just on my kidneys because they were sure that’s what was causing the issue, I’ve had GP’s ask if I want to see a phycologist because it’s in my head and “they can help” but most importantly I’ve been put on countless medications that I have now put in my body for absolutely no reason. This snakes and ladders adventure is way to much for me to handle, let alone 1 in 10 women in our country! I recently had a surgery to remove my endometriosis in June 2018, which I don’t regret at all, it did give me some relief from the every day pain for a little while but now 4 months later the pain is back nearly the same as it was before. My main symptoms of my endo is fatigue, sciatica, pain all the time but mostly the week before my period and the week of, acne, anxiety and migraines. And they are just the main ones! Endometriosis needs to be made more aware, people need to be knowledged about this disease that is hidden and not heard about when it’s actually as common as asthma! |