Endometriosis - My Story
My journey with Endometriosis - the beginning of my alternative treatment adventure! With the help from my mummy, my absolute angel in disguise ❤️
If you know me, I will keep talking until you tell me to stop. This blog will be the same. Keep reading… until there’s too much detail and you potentially want to stop haha! Sorry, not sorry in advance!
So firstly, what exactly is Endometriosis or Endo that people seem to talk about more these days? This is where the tissue that is normally inside the uterus, grows elsewhere - usually on your ovaries, Fallopian tubes or pelvis. BUT it can grow with your bowels, bladder, lungs, liver and more! Usually this tissue breaks down and is released in each cycle; when growing outside the uterus it does not have any way of exiting and so, becomes trapped - causing cysts and adhesions to grow. Surrounding tissue can be irritated, and scar tissue can develop and web-like inflammation attaches! Sometimes tissues in the pelvis and around organs start to stick together due to the adhesions. Endometriosis is one of the leading causes of infertility among women and can cause chronic pain. Although this seems to be the common symptoms, endometriosis can also be an underlying cause to...
- Chronic fatigue
- Interstitial cystitis (inflammation of the bladder)
- IBS (inflammation of the bowels)
- Depression / Anxiety
- Immune deficiencies
Just some of the few that I am familiar with! Endometriosis is commonly categorised by the following symptoms; painful periods, pain with intercourse, pain with bowels/urination, excessive bleeding, infertility, bloating, nausea and MANY MORE! If you ask me, if you have pain then there is something not normal going on. Pain is our body’s way of screaming out for help.
Sounds like a horrific disease that controls the lives of 1 in 10 females worldwide. Some doctors listen to the symptoms and others do not. I was lucky. Lucky to be diagnosed at 15, lucky to have the help of a good doctor and amazing parents who listened to me and paid attention to the signs. So how did my journey begin??
Probably at the age of about 11 - 12, when you start to get the birds and the bees talk. Ours was probably similar to everyone else’s. Apart from the “There is this illness called Endometriosis, and there is a 90% chance that at least one of you is going to suffer from it”… You could say I definitely suffered. From chronic pain mainly; mum waking up to me crying on the kitchen floor, nauseous, fatigue, bowel problems, rib pains, nerve pain, bladder conditions, immune system weakness and more! Just pain and more pain. At 15, with my symptoms and family history, I know I was lucky to be taken seriously, and so my first keyhole surgery was done. Stage 2/3, was what my diagnosis was… So here I am starting to get serious. My mum used to have so many herbal concoctions that I would tell Dad she was trying to kill me haha! Gluten free and dairy free was me for a good 3 years, although I did get sneaky and enjoy life with some treats! I was the weird girl at parties that would turn up with gluten free fruity ciders - at least no one would steal them! 6 months after my surgery I got a Mirena put in, although I tried not have this done. The Mirena sits inside you, it's mainly used as contraception but in my case was as prevention for more endometriosis tissue to grow. You see. One surgery does not solve it all. As long as you bleed, the endo will always be growing. So along with getting the Mirena put in, my bladder investigated too. I had interstitial cystitis - which pretty much meant that my bladder was constantly inflamed due to endometrium adhesions. It was like living with an extreme Urinary Infection every - single - day! Not to mention I could barely control my bladder too! Welcome amitriptyline into my diet - a medication that was used to block nerves in my case. Eventually, I ended up on 7 tablets (10mg per tablet) a day for 7 years… Plus add colonoscopy into the mix a year after my first surgery too! I would constantly have problems and at one point I lost a lot of weight! I lost 9 kgs due to the issues around my bowels and not being able to hold any nutrients. Imagine me… at 44kgs. Not what you want! But three surgeries down!
Fast forward to when I was 17/18, university and living the life away from home. I went alcohol-free for 8 months, nothing much seemed to change in the way of symptoms. I use to hold my breath until the stabbing in my ribs would disappear. My back would swell and be so painful in one particular spot (I would get people to push so hard to relieve the pressure - my male friends were scared that they would break me!). My right side would stab and continue up until I felt I could not breathe and would hyperventilate. I was constantly becoming sick. I was told to try contraceptive after contraceptive (I had reactions to so many). Fast forward to 19 and I had a Mirena and 2 contraceptive pills - plus A LOT of symptoms that kept piling up and up. That year, after 18 months of sharing my symptoms and complaining and suffering I had my second keyhole surgery. A cyst on one ovary (3cm), the other stuck with adhesions to my back, and my bowel and bladder attached to each other, one area of my bowel was stuck to my lower back also… Well that was fun! I cried for a week afterwards because every time I moved I felt like everything inside me was going to roll with me! 1 month of looking 6 months pregnant and I went back to university. Again still with amitriptyline, Mirena and 2 contraceptive pills - oh and being told I should consider children in the next 2-3 years!
Fast forward more to when I was 21/22, moved back home to be with my family and start my business. Colonoscopy done AGAIN, which I knew would show nothing (5 minor surgeries completed) - bowel expert “I think this is Irritable Bowel Syndrome and you should come and breath through a chamber for 3 hours on Tuesday and Thursday. HAHAH! Yeah let's try get dad to sit in a room with me and also try to run a business with that much time out - no thank you! I decided now was the time to really wake up. I had been taking amitriptyline for 7 years and only just done the research (I know silly Paige), turns out you shouldn’t be on it long term, it can ruin the lining of your stomach, you shouldn’t drink alcohol (oops) and shouldn’t be in direct sunlight!!! WTF. Contraceptives where costing me $120 every 2 months and I was sick of the nerve pain I had developed in my leg (meaning some days I couldn’t walk on it) and constantly feeling uncomfortable. At this point I was just done and so over using “I have endo” as an excuse, because it was. It was the good excuse when it wasn’t even viable. I could tidy up my life and I was going to. I began to look at my diet some more (to be honest not overly but just a little tidy up ahah). It took me 2 months and feeling crazy for about a month to come off my amitriptyline. In which case all my bladder symptoms came back so I changed my diet to every 3 days no protein for 2 months! No more pain or complaints. It took me another 4 months to stop my contraceptives! At the start of 2018 my hormone levels where at 13 (in the orange - near danger zone) and I began to save to freeze my eggs. I worked with NIS, I worked with a sport massage therapist to clear my scar tissue (this hurt like a bitch), I worked with dural to clear my trauma (Dural tissue) and I just began to take control of my body again. End of 2018 I went to the fertility associates feeling so confused on what to do, eggs only last 10 years, so I had until 32 to try have a baby naturally and if not use up those eggs (add a marriage in there cause I’m old fashion too haha). I decided to do a hormone test every year and see where my levels were at. And so, 2019 I did another test (each costing $100 a time by the way), and my levels had improved by 2 markers!! YAY ME! I had this sorted surely. I had another explorative surgery to ‘check me out’ and my Mirena replaced for the 3rd time since I was 15. After some thought and a little chat with my partner (so he wouldn’t freak the flip out) in November I got my Mirena removed. BACK THE BUS UP! Not to have children, but to allow my body to regulate normally, to do what it is meant to do. And be able to heal myself without any interference.
Still living life! A (most of the time) balanced one 😉
Paige now… Still no idea what a normal cycle is, which freaks me out from one month to the next haha! The odd bloating has occurred but nothing major or potentially linked to the glass of the wine the night before haha. I have had one really bad day with pain. BUT, *touch wood* so far, so good!
For close to 12 years I suffered from:
- Bladder issues
- Chronic fatigue
- Chronic pain
- Bowel problems
- Bloating to 6 months pregnant
- Painful periods
- Painful intercourse
- Pelvic Pain chronically
- Poor movement through my hips (shit flexibility)
- Lower back pain
- Nerve damage in my leg (second surgery problem)
- Nerve pain through my ribs and lungs
- And probably some other things that I can’t remember now!
“Suffered” being the key word… I had tried a pain clinic (waste of my life), yoga, medications, herbal remedies, and more! But honestly, it’s your mind set. You want to take control of something you will! Of course it definitely helps with the right treatments at your side too. Through NIS I have worked with so many women with endometriosis and reduced their symptoms - with four NIS babies out there now too! One step at a time we can change our lives and live our best lives! I sure am going to.