Endometriosis: Hear Her Roar!
How It Took Twenty Years To Be Diagnosed
Disclaimer: I am not a qualified medical professional and in no way telling others what they should or should not do in this article and subsequent posts regarding your health. This is just my story I wanted to share and what I experienced over the last two decades. I have found all too often women’s health is disregarded and in doing so, we feel ashamed, embarrassed or at times don’t even take our own health seriously, which leads us to not tell our stories and communicate what is happening within our bodies. The more we discuss, listen and learn I hope we can pave the way to cures, education and better management of women’s health related issues. If you are experiencing health concerns please do visit your GP or other health professionals. Please remember, just because one doctor says “it’s in your head”, doesn’t mean it to be true. If you are suffering in pain (you know your body better than anyone), be your own advocate and keep seeking help. There are many wonderful health professionals out there who can and will try to find answers x
Twenty years later and we have a POSITIVE diagnosis for Endometriosis…
Why did it take so long you might ask? There are a mountain of reasons. Firstly, Endometriosis sadly takes on average 10+ years to be diagnosed because so little is known about the disease alongside limited funding being available for further research. This is something that I find really upsetting. Women’s health overall has little to no funding in comparison to men’s health. This is slowly changing, but at a snails pace! Secondly, I also have autoimmune diseases, including Hashimotos (Under-active Thyroid) and Colitis (Proctitis). These two diseases overlap in a lot of ways with Endometriosis and the associated medications making it super hard to not know what was going on as they masked what was truly happening inside me.
It has made for one hell of a journey I will go into further. I want to share the next parts, “how it all played out”, in the hopes that others who may be going through a very complicated and confusing journey might relate and who knows, it could help other women get diagnosed earlier and not have to endure TWO DECADES of pain I went through both physically and mentally.
Let’s rewind before getting into the details
For me it all started in my late teen years. I got my period just three months shy of my sixteenth birthday. Yep, I was a late bloomer! By the time I was seventeen I was on the pill due to very heavy periods. I mean insane amounts of blood pouring out to the point if I removed a tampon it was like a tap was turned on full ball. I remember being at a NSW State Championship meet for swimming and running to the bathroom thinking I could quickly change my tampon. Upon removal, so much damn blood came out it was covered all over my legs and the floor/toilet looked like someone had been murdered in there. I was in tears trying to clean that mess up. No one told me that was NOT NORMAL! After being on the pill it kept my periods at bay, however by the time I was nineteen I was having huge amounts of issues with stomach pains, extreme bloating, constipation and bleeding from by rectum. Couldn’t be more fun as a teenager with those problems when all you want to do is be out having fun and partying! It was during this time I was soon diagnosed with Colitis (proctitis) via colonoscopy.
It only gets more confusing
However, the fun didn’t stop there. I was on medication for the Colitis, but my first specialist didn’t know what he was doing and was over medicating me. YAY! My bowel pains continued throughout the next few years as I continued to struggle. The pill was masking my period flow, so I never questioned it. I assumed all that part was “normal” and just put up with my painful periods as I thought that the issues stemmed from my Colitis. When I was twenty-two I stopped the pill because I thought it was causing all these problems. Oh how wrong I was! Time went on and slowly I became anaemic, my B12 levels dropped like crazy, I learned I was developing Osteoporosis because I wasn’t absorbing calcium, thrush was now owning my life, I was drop dead tired and to top it off my bowels felt like they were going to explode the pains (all month long) were so bad. As I was undergoing blood tests during this time it wasn’t until I was twenty-five that I was diagnosed with Hashimotos disease. Now I was told, all I had to do was take my Thyroxin in the morning and I was sweet! Mmhmm, the plot thickens.
As you can imagine, I’m twenty-five and panicking my bones will shatter (the Hashimotos diagnosis didn’t change the fact I still wasn’t absorbing calcium), so through my GP and gynaecologists advice I went to see a nutritionist who turned out to have colitis herself, so she “got it”. I underwent the FODMAP diet to learn what my trigger foods were and try and make sense of what the hell was happening to me. It turned out gluten and dairy did not sit well with me. After stopping them for a few months my blood tests revealed all my iron, B12, calcium and other levels were up! I did another bone density scan and my osteoporosis was reversed. THANK FECK! No more being a broken old lady at twenty-five! And best yet, my chronic thrush was gone! However, even though the gut pains eased I still struggled with constipation and bloating. The pain was all very real and ongoing. At this stage I was asked to eat gluten again to undergo an endoscopy to test for Coeliac disease. Yes, no one thought to test for that in the previous SIX years whilst I underwent 5+ colonoscopies. So, off to a new gastroenterologist I went who was great, but we realised I couldn’t do even one meal with gluten without buckling over in pain, migraines setting in, thrush kicking off and me basically passing out. So, the GP and specialists agreed (gastroenterologist/gynaecologist) I would be treated as Coeliac (undiagnosed via endoscopy) due to the extreme circumstances.
The pain lingered on
I continued to crawl through life post these diagnosis events because despite the fact I wasn’t 100%, it was a hell of a lot better than before. However, it wasn’t long before the pains hit an all time high and by the time I was thirty I was in the ER! This time my right foot and ankle was bulging with fluid and forming blood clots in the skin. OH JOY! No one had any idea what was happening and yet again I was deemed crazy despite the obvious FAT AS FUCK foot. Something I forgot to mention earlier, throughout all these pervious year many doctors and specialists told me I was crazy, making it up, weak or the classic “it’s all in your head” one liner. So, my mental health was on tender hooks. Back to the ER! During this time I was trialling the Nuva Ring for contraception and doctors thought this could be causing issues, so I took it out. To this day who knows what part it played. I only used it for four months after being off contraception for about eight years. The ER saga ended up with me at a new specialist, the rheumatologist! Now blood tests were showing markers for Rheumatoid Arthritis (possibly Inflammatory Arthritis as the specialists couldn’t pin point what was happening as my results kept varying each time I was tested), so again I assumed that was the issue in my foot and off I went trialling a drug called Sulfasalazine, which also treats Colitis.
Side note: I trialled over the next three years Sulfasalazine, Imuran, methotrexate and a few other horrible drugs that are supposed to treat autoimmune conditions and rid my body of the awful pain in my right foot. Each one brought its own side effects and periods of hell I had to endure. The drug that caused the least side-effects was sulfasalazine, so I stayed on this one long-term.
I can’t fecking poop!
During this time I couldn’t poop for days/weeks at a time and this went on post the “foot flare up” for six months. I was so unwell, I’ll be honest, I started questioning if this life was even worth living. It was an extremely dark time and I have had a few of these and feel its incredibly important to be transparent, so others do not feel alone in their chronic illness pain. I wasn’t going to give up though! I had started seeing a very good and open minded GP, who suggested the Centre of Digestive Diseases (CDD) to help treat my gut problems, as I was getting nowhere with my gastroenterologist at the time other than polyps removed during a routine colonoscopy. The specialist at the CDD found it strange I had constipation with Colitis as it should be the opposite, chronic diarrhoea, so they trialled an antibiotic, as they thought I may have had a some kind of “bad bacteria” causing the issues. Now remember, at this same time I started the Sulfasalzine treatment for what they are thinking is inflammatory arthritis. The combination of the two medications meant I started pooping like normal again over several weeks. Again, I didn’t complain and put this down to “gut issues” and one or the other drug was doing the job.
Life continued with the ups and downs of pain, but I persevered and just reminded myself it was not like the “worst times” I had experienced. However, my poor body was screaming for help! I didn’t what to do. Of course she wasn’t going to let this go and two-three years later the hellish pains emerged in full force and this time they were not going away. I had only started to hear about endometriosis since I was about thirty, even though I had seen three gynaecologists over a ten year period, not one of them once mentioned this disease. I even had seen one because I was having such difficulty with my bladder including chronic UTIs, yet again told to go away it was all in my head and I needed to learn to pee properly. WTF, hey? After discussions with my GP she was piecing together that on top of my autoimmune conditions, endometriosis could be lurking, so she sent me off to one of the so called “best gynos” (Note: my GP didn’t know at the time this gyno had stopped looking into Endo or treating it through surgery, so this was not her fault and I am not implying that). This gyno is one of the types with podcasts now and all the flashy bullshit, charges a fortune and to sum things up told me if nothing came from the Deep Infiltrating Endo scan then really I should just go on the pill, take B6 and it would “go away”. She went further to warn me against surgery as it was expensive and a waste of time as having it removed did nothing. Yes, this is one of the well known gynos. Very, very disappointed now looking back and pretty angry.
It’s all in my head…
I spent 12 months after seeing her thinking she’s right, it is all in my head and even if I did have it there is nothing to be done, so I had to sit and suffer. But, my body was having none of that. In late 2020, I had generally had enough of being in pain, so started Muay Thai because that’s what you do when in pain, join a fight sport and get smashed right? The thing about the whole experience is that it pushed me to be an athlete once more and those you us who have been or are athletes know our bodies extremely well. I was getting small knocks in training and my legs would form lumps the size of mangoes on my ankles and shins. It was so painful it crippled me to the floor and prevented me from walking and I had to be rushed to ER for fear they were blood clots. This also extended to my sciatic joints that would hurt so bad I was left unable to get up off the ground and I had not even been hit there. Other areas of my body would take hard kicks, punches and knees, but nothing. Not a bruise, scratch or bump!
In the ER I was treated like the usual nut case charade that goes on and told to go home and stop Muay Thai and do yoga. Yeah, no not happening. I like yoga, but I need to hit and kick stuff thanks. I knew deep down something was awfully wrong as my guts were in agony. I had stopped the sulfasalzine to see what would happen and what do you know, I had chronic constipation and my organs felt like they were wrapped in barbed wire and lit on fire. To top this off my periods were a nightmare, sex was out of the question, I was in a cloud where I felt suffocated (some call this brain fog), headaches rained bloody murder, my bladder hated me, my legs were so swollen and heavy walking was hard, I couldn’t sleep yet I was chronically tired and my mouth burned of ten plus ulcers at any one time. Wrapped around the physical pains was my deteriorating mental health where depression reigned freely and anxiety smacked me around at any given moment. Things began to get really dark…
Enough is enough!
Reaching breaking point I went to my GP and begged to see a specialist that would take me seriously and look into Endometriosis. Shortly after I met my new gyno who has changed my life. He never once judged, criticised or assumed. From the get go he suggested we do the laproscopy and find out what is happening and if there is Endometriosis. I also agreed to have the Mirena inserted for ongoing treatment (well trial it at least) if endo was found. I woke to learn I had Stage 3 Endometriosis (or as my specialist calls it “mid” on his scale of mild-mid-severe). I cried so damn much, but it was happy tears. Despite having another incurable disease I WAS NOT CRAZY! After years of not knowing, I now knew what was happening inside me. It took way too long to diagnose, but we got there.
If I can give one piece of advice it would be to find a VERY good gyno/surgeon who specialises in Endometriosis and has an extensive track record proving they know what they are doing. This ensures that they can actually find and diagnosis endo first go and also remove it without damaging any of your organs. I cannot stress this enough! Take the time to find a great team who can help and support your Endometriosis treatment and ongoing management.
The post-op questions
Will it come back? When? How bad? Will the Mirena keep it away? Will the Mirena bring a host of new problems?
Do I even have RA/Inflammatory Arthritis? Because, since surgery the swelling in my legs, feet, ankles and sciatica is gone and I’m no longer on those meds. This is something I am tracking with my gyno and rhuematologist. Was this all due to endo?
Is gluten the enemy? Well, I tried. I would do anything to eat real bread, pasta, cakes etc again. However, I broke out in hives, my stomach was in agony and got thrush. So, yeah, nah. Remains my mortal enemy. I’m learning many with Endo can’t tolerate gluten, so I could have been looking after myself in this regard early on.
Only time will tell…
It is a game of wait and see how things go as many with Endo know. Unfortunately, there is little known about Endometriosis and her sister Adenomyosis due to limited funding available to assist with research and development. Specialists do not know why this disease operates in the way that it does. Why it occurs, why it comes back for some and not others, why some with stage one have worse pain than those with stage four and the list of unknowns goes on. However, we are seeing positive changes occurring as awareness is beginning to be raised in increasing volume. Recently, the Australian government announced $9 million for research into non-invasive diagnostic testing, and a better understanding of why endometriosis develops and progresses. This is a big win and step in the right direction. Quite a few other investment initiatives were also announced, which you can read on the health website.
For those who are not aware I have been drawing my tribe of Femnarlia women for over five years now and throughout the pain they have evolved alongside me. Looking back over their evolution I see my body screaming for help. I could never answer the question, “Why do they have mouths with blood coming out the vaginas?” I now know where that pain was coming from and I am so sorry I ignored her for so long in all my confusion and pain. Going forward I now do know how to tell the story of the Femnarlia, which you will hopefully see come alive alongside my illustrations. I look forward to sharing these with you.
For anyone wanting to reach out and chat about Endometriosis or Autoimmune conditions I am always here. I know how isolating it can feel. These incurable diseases have taken a lot away from me, but I keep on fighting and now with the new diagnosis rebuilding and repaving my life as to what works for me. I won’t give up and don’t want to see anyone else either. Sending much love to all the beautiful Femnarlia out in the world. We’ve got this!
