Approximately one in nine Australian women have clinically confirmed endometriosis, with most diagnosed during their early thirties. But this doesn’t include the thousands of women battling with the symptoms but riding them off, or unaware of the help available.

So, to highlight the importance of speaking about the condition, we recently asked women across the country to share their experiences with Endometriosis, and the majority of their stories show why we really need to speak more openly about diagnosis.

Women Are Suffering For Up To 8 Years Before Being Diagnosed With This Disease

J – 24, South Australia

I feel lucky with my endometriosis story, as I know so many others have it much worse than I do but it is still a large part of my daily life. I had never heard about endometriosis until I was 19 years old and saw an online article. I read through the symptoms and thought, “that sounds exactly like me. Anemia, heavy periods, short cycles, and sharp pain down my legs.

I had been seeing my GP regularly to find the right contraceptive method to help but nothing worked like it should. I told my GP that I thought I might have endometriosis and she referred me to a specialist. The (very uncomfortable) internal ultrasounds didn’t show anything but my specialist still thought it was best to have surgery to diagnose.

I booked in for a laparoscopy and insertion of the Mirena IUD to help symptoms of endo. During surgery, they found and cleared out some endometriosis and small cysts. Finally, a diagnosis and a name to call what I was experiencing.

I gave my Mirena 3 months to settle into a rhythm but I was still experiencing random bleeding and pain. My surgeon then put me on a contraceptive pill on top of the Mirena to try and settle it into a pattern.

When that didn’t work, I tried another pill. I was spotting or lightly bleeding 5 days a week and taking nurofen almost every day. This affected my life by making me nervous to go to social events as I didn’t know when I would bleed or be in pain.

I didn’t date for 18 months as I didn’t want to have to explain why I was in pain and bleeding or why I couldn’t have sex.

As a young woman in university and only working casually for a few hours a week, I relied on my mother financially to buy my prescription pills- some of which cost $90 a month (and didn’t work!). I felt guilty and frustrated that I had to rely on other people financially and that I was isolating my friends as I couldn’t do the same things as them. However, I found that I had an incredible support system around me that cared about my physical and mental well-being.

Eventually, my surgeon agreed to take out my Mirena (which had to be under another general anesthesia as the strings had coiled inside). I have now found an oral contraceptive pill that is working at relieving symptoms. I still have to have my bleeding cycles but they are lighter and more regular.

I am thankful that my doctor listened to me as this new treatment has allowed me to work, socialize and travel the world without fear of pain or debilitating symptoms.

I am nervous about my fertility as my doctor suggests I should be planning on having children by 28. I am turning 25 this year and do not have a serious partner. Dating is exhausting and tough work for anyone! Not only do I have the pressure of a time frame, but if I try to have children, I know that I will have to endure my natural, painful and irregular cycles which may also lead to difficulties in conceiving. I don’t know how I am going to manage my endometriosis in the future but I am thankful that I have a normal daily life at the moment.

Erin Barnett

Just because you can’t see my insides and how bad I have PCOS & endometriosis doesn’t mean my pain can’t be validated. It’s so hard for people to understand just how painful PCOS and endometriosis is.

My pain gets so bad. Any movement makes me feel like my ovaries are exploding. ⁣I have burn marks on my pelvic area from constantly having heat packs on me, and the sensation of the burning is more comfortable than the pain inside me so I leave it.

I’ve had countless surgeries for PCOS and endometriosis. I’ve been asking, begging & pleading for someone to take out my left ovary because of the pain and cyst it causes me on the daily. Sadly, as per usual; no one was listening to me! It’s my body let me do what I want with it! It is literally the most frustrating thing in the world being told what you can and cannot do with your body.

The more I’ve been speaking about it the more I’ve realised people have it.

Read more about her story here.

Emilia Victoria

Emilia Victoria (@livingwithendometriosis__)

My name is Emilia, I’m 27, from Australia and I suffer from Endometriosis.

I’m a relatively new mumma to a little miracle, Easton. My fiancé is Blake, who was with me through my whole diagnosis stage.

After years of having a “painful period” I was finally diagnosed with Endometriosis at the age of 24, via laparoscopy and excision surgery. After 11 years of chronic pain and horrible symptoms to finally have a diagnosis and answers was a huge relief.

The Endometriosis was pretty much everywhere, my ovaries were immobile and I was sitting with stage 2 almost stage 3 Endometriosis.
Severe pelvic pain, fatigue, vomiting, bloating, bowel issues, urniary issues, heavy bleeding, back pain, leg pain, as well as other health issues that have come along with it, are just some of the things I’ve had to live with having Endometriosis.

In the 11 years of being undiagnosed, I was misdiagnosed with many others things, appendicitis, IBS and constipation, just to name a few.
It wasn’t until I collapsed after a personal training session from debilitating pelvic pain, that I was taken to a hospital near by, which happens to be an hour away from home.
I was admitted and finally taken seriously as the hospital happened to specialise in Endometriosis (not very common).

Endometriosis has changed my life dramatically it many ways, physically the pain can be debilitating, some days not even being able to complete normal day to day actives. Over the years I’ve missed school, work and had to cancel many plans due to the unpredictably of this disease. I’ve lots jobs, felt isolated and been made to feel unreliable at times because of this disease.

Endometriosis also effected my trying to conceive journey, once I became extremely blessed to be able to fall pregnant with our little miracle baby, it had some high risk effects on my pregnancy as well.

Mentally there has been a lot to over come, sometimes it can feel like you’re in a constant battle with you own body in which you have no control of. You can do everything “right” and still not feel well, you can eat healthy, drink water, do yoga, make lifestyle changes and still have a flare up or other medical conditions that can come along with Endo – that is the unpredictably of this disease.

Emotionally, it’s an absolute roller coaster living with endometriosis. The days where the pain is debilitating can be incredibly hard emotionally, but once I overcome that day I remember how incredibly strong I am and how much strength living with this condition has given me.

Everyday I feel like I hear a new misconception about endometriosis, “a hysterectomy is a cure”, “pregnancy is a cure”, “period pain is normal”…
I could go in forever.

I think at the moment realising there is no cure is important, also realising that Endometriosis is so much more than just a “painful period”.
Endometriosis is a whole body inflammatory disease which can cause so much more than just a painful period.

There is no cure for endometriosis, but finding what management plan works best for your symptoms is key.
Finding the right medical support team is also important. Always seek second opinions if something doesn’t sit right with you.

I’m so passionate about wanting to constantly educate myself about Endometriosis, helping others and spread the word.
I do this so the younger generation doesn’t have to go through the same heartache of living years with crippling pain, horrible symptoms and no answers, or even the wrong answers like I did.
I also don’t want those who are still in pain after so many years to continue to go undiagnosed and unheard.

I’ve learnt how common Endometriosis is, but also how many people are still unaware of it.
I believe there needs to be more awareness and education surrounding Endometriosis.

My main goal has always been to spread awareness in a caring and some what positive light, but keeping it completely realistic.

Excision surgery is known to be the gold standard treatment for Endometriosis and that’s what I’ve found to be most effective for me. Living a mostly inflammatory lifestyle post op has also helped me manage my symptoms.

Physically I made a lot of lifestyle changes, the way I eat, the way I exercise and the supplements I take. Emotionally and mentally, breath work and meditation is key! Positive daily affirmations do wonders, as well reaching out and speaking to someone.

I also started my Instagram page @livingwithendometriosis__. This has helped me in so many ways. I’ve connected with so many beautiful souls world wide, which I’m extremely grateful for. It really has a great community feel to it in which we constantly support and advocate for each other.

Angie Kent

My period was really bad from high school, but it got worse as I got older, it started to get really bad in my early twenties. The main thing is I’d feel like a crazy person every single month for the three days leading up to my period, and then the pain increased during.

I’d not have a period for ages or just bleed for months on end. It got to a point where I thought ‘I can’t live life like this… I wouldn’t want to get out of bed. Sometimes I’d keep bleeding and bleeding and bleeding and wondering when it was going to stop.

With sex being painful, I was thinking, well this isn’t fun for me, what’s wrong with my body? I would bloat so much leading up to my period, to the point where I’d gain three to four kilos, and when you’re bleeding all the time and in that much pain, how are you meant to feel good about yourself?

Read more about her story here.

Nalini Natesan

Nalini Natesan

When your normal, is not normal.

My ‘normal’ has always included a painful stomach, nausea, constipation, cramping and fatigue. During my period it would be ‘normal’ for me to skip my usual activities like hockey training or stay home from work to lie in bed with a heat pack on my stomach. It was just a ‘painful period’ but doctors visit after doctors visit, I was referred to a gynaecologist.

At the age of 23 I had my first laparoscopy, the only way to diagnose endometriosis. However, the gynaecologist couldn’t clearly explain to me what was removed and wasn’t clear on a diagnosis. So I continued with my ‘normal’.

Sadly, this is not uncommon. On average women will wait 6.4 years until a diagnosis. I waited 10 years. I didn’t realise my symptoms were all linked and my doctors never probed about other symptoms of endometriosis. It wasn’t until my second laparoscopy at age 33 that I finally received a diagnosis and answer to my ‘normal’.

My advice for those with period pain, if it is affecting your quality of life, it’s not normal. Seek help, seek a second opinion and a third opinion. Don’t settle for a life of pain.

Taleah Ratz

I started getting my period when I was 11 years old, and for as long as I could remember my periods were heavy, draining and painful. During my teenage years it was not uncommon for me to have to wear maternity pads for days due to the amount of blood I was losing.

The first few days I would be so severely cramping that I would miss school and/or work. My pain was often so bad that I would vomit or faint because of the pain. On these occasions my mother took me to the doctors and every time I was just told “you have painful periods, take some Panadol, use hot water bottles and rest”.

When I was 17, I went on the pill and yes, the period pain stopped! Hooray! However then I had severe side effects from the pill like mood swings and acne. I went on and off the pill during me early twenties. And during this time I was able to feel and recognise in my moods and eating habits when my period was coming and I could prepare.

The pain was still crippling, but I suppose I had learnt to know and recognise what needed to happen.

For the first 2-3 days of my period, every month, I lived on nurofen. It would be nothing for me to go through a pack of nurofen in 2 days. And that didn’t even get rid of the pain! Only dulled it enough so that I could function at work and in my life. I thought this was my lot in life, painful periods were normal.

My place of work is filled with a lot of women, and so many of these women over the years would see my bloated stomach and the the times I would double over in pain or the times that I wouldn’t be able to talk or stand because it was so painful – luckily I kept getting told that THIS WAS NOT NORMAL!

At 29 I went and saw a doctor that specialised in women’s health, by this time I had read about endometriosis but because I didn’t suffer from ALL of the symptoms I was unsure wether that was what was wrong with me. She referred me to a gynaecologist and in my first visit he listened to all of my symptoms and did an internal ultrasound. During the ultrasound he identified that I also had adenomyosis and that this could be contributing to my pain. He was unable to see any signs of endometriosis on the ultrasound but booked me in for laparoscopic surgery.

Turns out, I had severe endometriosis, it was on both sides of my uterus, has grown onto my bladder and I had nodules on my rectum. My doctor removed it all and put in a mirena to hopefully stop the periods and therefore stop the pain. The mirena is also meant to treat the adenomyosis hormonally and slow the growth of the endometriosis. After a couple of long months of my body getting used to the mirena, I finally had a period that I had no pain! I didn’t even know that I was getting my period until I went to the bathroom one day! It was exciting!

A long road – but now I absolutely tell everyone that if they are having severely painful periods to please go and get it checked!

Courtney A

Due to the condition involving potential future infertility, I made the decision at age 25 to go through the egg freezing process- IVF. As someone who is newly in a relationship, just starting my dream job, kids are the last thing on my mind. However I have been fortunate enough to be given the best advice and will be soon going through two to three rounds of IVF with the intent of freezing and using them 5- 10 years later.

I wish that more young women my age knew about this and there was less stigma and shame associated with IVF. Especially at 25.

https://www.instagram.com/p/CKBIBWBnNYa/

https://www.instagram.com/p/CKBIBWBnNYa/

Penny McNamee

I’ve always had terrible period pain, but it was my normal and I didn’t have anything to compare it to. My approach now is to ask more questions of my girlfriends and sisters about their health and their bodies, to ascertain what is their normal and what is not, as well as continuing to monitor my condition with my doctor.

I had surgery for endometriosis a year before Neve was born and I found I have been in far less pain since. However, it is not a curable disease and has the potential to grow back, so I will have to monitor my pain levels to see if I will need surgery again in the future. I am much more aware of my body during my period now; I listen to it and if I need to rest and take pain relief – I do it.

Read more about her story here.

Marjolaine Guaresi

I’ve been suffering with endometriosis for years.

Unfortunately the doctors only put a name on what I have a couple of years ago.

My period pain was getting worse and worse. I raised it many times with my doctors over the year but all of them where saying “it’s normal” “it’s just period period” “everyone gets that pain” “you must be more sensitive to pain than others”. Over the years the pain worsen. From my late 20s I was taking codeine monthly to deal with the pain. I was exhausted. My belly swollen so much before my period and for days after. I only get 5 days of “normal life “ a month. I’ll go to work exhausted after a rough night dealing with the pain but always trying to do my work the best as I could.

The worst pain hit was when I was 30. I remember being on the ferry from manly to go to work. I started having unbearable pain so took a pill of codeine. However it was taking some time to be effective and in the meantime I ended up on the floor of the bathroom of the ferry crying of pain. After that I decided that whatever the doctors will tell me this pain is NOT normal. After seeing some specialists I’ve found my new gynaecologist and he recommended to do a laparoscopy.

I’m 32 now and I had laparoscopy a year ago. My life is so much better now after the surgery. The surgery was very hard for me and the recovery was took longer than I expected but it was all worth it. Endometriosis usually comes back but hopefully it will take a long time that’s all I can hope for now.

One of my friend suffers from endometriosis as well and I recommended her to do the laparoscopy which she did a few weeks ago. It was a tough one for her as well but I hope she will feel so much better afterwards as a result.

Nicole Staff

I am 43 years old and suffered severe endometriosis when I turned 30. I had 4 laparoscopies in one year, I had an ectopic pregnancy and was told to get pregnant then my doctor said “he would cut my womb out”.

We tried IVF and fell pregnant first time and were blessed with a healthy baby boy after a healthy pregnancy.

I did a lot of research around endometriosis and felt incredibly isolated as it wasn’t a disease that was openly discussed at the time. I now know many of my fellow mum friends also suffered severe endometriosis and PCOS as they hit their 30s too.

I spoke to my IVF doctor about the links with low progesterone and endotriosis and he scoffed at me. I went and got my hormones tested through a saliva test which showed my progesterone basically totally dropped off after day 14. I went onto progesterone through Trojans and fell pregnant naturally with our daughter 2 months later.

Since having my two children I’ve changed my diet and now lead a low sugar and low gluten diet with minimal alcohol and daily exercise and have been pain free and surgery free for 8 years now. This has worked for me but I know every case is different.

I’m so pleased its more widely discussed now and there are support groups out there.

https://www.instagram.com/p/CMA5oGGnIKc/

https://www.instagram.com/p/CMA5oGGnIKc/

Kayla Itsines

On February 19 I had my second surgery for endometriosis. I’ve lived with endometriosis for most of my adult life. It’s a condition where tissue, similar to the tissue lining of your uterus, is found on other organs, like your ovaries, which then causes pain and complications.

Endometriosis can take a long time to get diagnosed for lots of women as it’s sadly brushed off as ‘just your time of the month’. This is the reason I’m talking to you all about my experience and to try and encourage you to take action if you have very painful periods. 1 in 10 of us have it so you aren’t abnormal or a special case and you won’t be alone if you do get diagnosed like I did. 

For me I didn’t know if what I was feeling during my periods each month was abnormal. It took me years of living with that pain before deciding it wasn’t right and going to see a doctor to get the surgical treatment I needed and a confirmed diagnosis.

Just two weeks ago, I had to have more surgery after suffering the worst pain I’ve ever felt. Since my surgery, some days have been really tough especially when you have a lively daughter on your hands (as you can see in my video) but I’m so grateful to have my family close by to help me. I’ve been doing everything I can to make sure my body heals, such as light walking on the treadmill. But I’m staying positive and hoping that the procedure helps me to continue managing my symptoms.

I wanted to share my ongoing experience of endometriosis to help remove the social stigma and increase awareness. So check in with your doctor, family or friends if something doesn’t feel right, remember no one knows your body better than you do.

Anonymous

I got my first period at 12. I was prepared, mum had explained what to expect and how to use a pad. It’s a right of passage for every girl, my boobs had come in the year before and it was clear to everyone the “hormones” were there. I was not prepared for the pain.

Fast forward 19 years, I had endured monthly cycles of pain, vomiting, cramps, legs shaking uncontrollably, the lot – I scheduled my life around “that time of the month” and cancelled social plans. I never felt comfortable making it known, was that because I’m a product of my environment? No other female in my family experienced this monthly, was something wrong with me or was I “just a sook”? Did I need to toughen up? All thoughts that passed through my mind monthly.

Almost two years ago I had an emergency trip to the hospital, I was suffering my first miscarriage (I’ve had two), they did an internal ultrasound whilst I was writhing in pain on the bed. The Gynocologist mentioned to me afterwards she saw something that “indicated” endometriosis and PCOS. Wait, I thought, you can’t detect that on a scan? She pushed me to investigate this. This was not the first time I told a medical practitioner how painful my monthly cycle was, how basically, I would have some sort of pain daily, every month.

6 months later, during a very uncomfortable ultrasound, they detected it, two specialists told me they think it’s grade 5 severe endometriosis. Was this a surprise? no. Should this have been identified earlier? Certainly.

Yesterday I underwent surgery to address this + a load of other things, because in my words “book me in for a full-service, do it all”. I woke up crying, the pain was so severe they have me ketamine to calm me down.

So in honour of National Endometriosis Day I put this in words to say, trust & listen to your freakin’ body ladies. Put aside other people’s opinions or how they “handle” their monthly’s. Listen to your body, push the dr’s and specialists. Talk to your friends, it’s time to normalise these conversations. We are all unique in our own beautifully amazing ways and deserve to be heard.

Joanne Peniston-Bird

Hey I’m Jo, 37, and this is my story. 

I was a late bloomer as my period didn’t start until I was 14. I was so excited to finally be a “woman” and Day 1 was what I would call a normal period. From Day 2 onwards all I have known is pain. Mum was at work and Dad was home and had no idea what was going on. I was in the foetal position on the couch writhing in agony. This was my normal. Dad called Mum to ask for help and as she had awful periods she told me to take some panadol and use a hot water bottle to calm things down. The pain would debilitate me every month. I would go to school, flood my undies and struggle to walk to the bathroom and then get sent home. I would also bleed for 9 days each month. Mum would then keep me home for a few days each cycle as the pain would get worse and worse. Docs kept putting me on a combo of naprogesic and ponstan and that would stop working. 

After 12 months of battling, my GP finally put me on the OCP. It definitely took the edge off and I could function. I still endured heavy, painful periods but I got used to the pain. Every year other symptoms would crop up. Migraines a week leading up to my period, awful mood swings, painful pimples, fluid retention and pain with bowel movements. I would constantly look for different combos of meds to keep “tricking” my body in order for the meds to work. 

Fast forward to my Uni days and I was walking to a class with my mates. I had been having an awful period. I was pale, low in iron and in agonising pain. As I walked out of the car park I nearly collapsed and my friends caught me. I made it to class and struggling to focus as it felt like I was experiencing labour pain. I went to the bathroom and vomited from the pain. More visits to the GP ensued and they put me on a different OCP. They blamed the pain on a hormone imbalance and spontaneous ovulation. Other symptoms began creeping in including multiple food sensitivities, chronic constipation, skin allergies, painful sex, anxiety. It wasn’t until I was 27 and more significant changes started to occur: stabbing pain in my rectum throughout the month and chronic clots large and small; I knew something was up. Finally I was sent off for an ultrasound and they noticed something unusual. They thought I had a polyp so I was referred to a gyno. I gave the gyno my history (Mum had adenomyosis and multiple fibroids) so that added weight to getting a diagnostic lap. I had my lap shortly afterwards. When my anaesthetic wore off, the surgeon on the day said I had some “old” endo scarring and sent me back to the gyno. My follow up appt was a game changer. The gyno said, “well everything looks to be normal. Some old scarring and that’s it.” I responded, “no that can’t be normal. I have pain whenever I go to the toilet please look at the surgical images again.” The gyno took another look, “ohhhhh. Yes, this image shows Endo on your bowel. I will have to refer you to an Endo Specialist.” I was referred to Dr Simon Gordon. 

I secured an appointment with Dr Gordon straightaway. When I walked in to meet him I was sure I would be turned away. It was quite the opposite. In that appointment, he said I had three conditions. Stage 4 Endo involving all of my pelvic cavity, especially on my bowel. He said we needed to get on to it straightaway and that if I waited another 6 months I would be looking at a bowel resection. I also had adenomyosis and polycystic ovaries. I was whisked into surgery the next week. I was so nervous and scared that he would have to remove part of my bowel. My first excision took 3 hours. It involved the pouch of douglas, both broad ligaments, my left and right pelvic sidewalls, my left ovary and my cervix. I also had the Mirena inserted. Dr Gordon warned me that because my Endo went undiagnosed for so long, I had a 50% chance of recurrence in 6 months. He was not wrong, it was back 4 months post op. It now involved my right ovary, ureter and my right pelvic sidewall. My second surgery was booked and fast tracked but i contracted Acute Meningitis and was hospitalised for a month. I managed to have my second op a few months later. After that, I wanted to ignore the fact my endo existed but it was always there affecting my life in ways I didn’t understand.

Episodes of anxiety became chronic, I couldn’t tolerate any food, I was diagnosed with SIBO and eventually became so fearful of food & pain, I became more and more reclusive and developed Disordered Eating habits. 

Dr Gordon had to operate on my right ovary another two times. He would hitch it to my abdomen in the hopes it would allow everything to heal and not fuse together. In January 2020, we decided to finally remove it. My pain became chronic, daily and impacted every movement; every aspect of my life. I had never wished for surgery more! This time, it was back on my bowel, my right ovary was so densely fused to my pelvic wall that it and the arteries and nerves surrounding it were unrecognisable. He spent 2.5 hours carefully dissecting the tissue and removing my bowel from behind my vagina. My right tube and right ovary were finally removed.  

It was after this surgery that I knew I had to acknowledge that I have a chronic illness and I needed to listen to my body. My new and amazing GP organised an allied health chronic disease plan. I did my research on the practitioners I wanted to work with and she sent referrals across. My pelvic physio team identified pelvic floor and bowel dysfunction. They also found I needed to add a pain specialist to my team as they identified nervous system dysfunction. My pain specialist diagnosed me with Central Sensitization and referred me to an amazing Pain Psychologist. Together, we developed a pain management plan to stay ahead of my chronic Endo and Adenomyosis and learn to manage life around chronic pain. 

I am now 10 days post op from the biggest surgery of my life; a Total Laparoscopic Hysterectomy and Pelvic Vault Suspension. Already I can feel small but noticeable changes. I don’t feel like I have a bowling ball on my pelvic floor any longer which is a huge relief! I share my story in the hope that all members of the Endo community don’t have to wait 13 years for a diagnosis. YOU have to be your own health advocate and if your chronic symptoms are dismissed; find someone who will listen. The answers are out there!

https://www.instagram.com/p/B9K2jt4g_mO/

https://www.instagram.com/p/B9K2jt4g_mO/

Jordanna Tucker

Hi! My name is Jordanna and my endometriosis diagnosis was as most women’s is: “drawn out and well overdue.”

For me, transparency is more important than anything else.

My endo journey began in my mid-teens, which is common. I recognise now that my periods were lasting longer than they should, and that the pain I was experiencing wasn’t normal, yet I never voiced it because if I did I was told to grin and bear it. “Welcome to womanhood,” was essentially the message. 

I remember sitting on my bag on the school bus because I didn’t want to bleed on the seat. All the while my friends seemed to not even notice theirs, it didn’t affect them at all. Looking back I feel so sorry for little me, I was so embarrassed all the time that I didn’t talk about it. I just tried to block it all out. 

One day I asked my mum if our “organs could twist”, because mums have the answer to everything, right?! But again, it was kind of just dismissed as stomach pain. Now I am very aware I was sensing scar tissue, lesions or adhesions forming, but at that point I didn’t know the difference.

When I was older, about 20, I started doing my own research into painful sex, painful bowel movements, pain radiating down your legs, pulling and burning in your pelvis and a search engine indicated that my symptoms may be suggestive of “Endometriosis”. I couldn’t even pronounce it – I wrote I down for my GP to read. 

I was told that the only way to properly diagnose it was through surgery and everything became really overwhelming all of a sudden. “Surely I don’t need surgery, it’s just bad period pain.” (YES! I had started telling myself that too). 

My angel of a mother encouraged me to do the surgery so we could at least cross it off the list. What came next changed my world. 

After my first surgery I was told that if I had waited 6 more months, I probably would have become infertile. Everything was glued together. My ovaries had disappeared into all the adhesions and there were deposits on my bowel and pouch of Douglas. But my tubes were clear, woo! It hadn’t completely destroyed my reproductive system. 

It was the strangest sense of relief and dread all at the same time. 

The next few years were the most challenging. The pain was unbearable, the bleeding was constant, and the end seemed nowhere in sight. It was like I had awoken the beast. 

The hardest part after your diagnosis is knowing what to do next, because there’s definitely not one, straightforward answer. Every body is different and every journey is different. What works for someone else may not work for you. It’s all trial and error and that can become really, really draining.  

I’ve had 3 surgeries now, all as bad as the last. Number 4 is coming up, so I’m praying for better news. I’ve found a medication that works for me, changed a lot of my diet and lifestyle, found an amazing community of women on Instagram and learned a lot of ways to deal with the day to day life of being an endo warrior. I feel very blessed to have had the journey I’ve had so far, I know a lot of girls and women who aren’t so lucky.  

Even though it’s more bearable, it is still a constant challenge. 

I have 5 young nieces and I honestly just look at them and think god – I hope this doesn’t happen to them. 

For a long time I was defined by it. There were so many tears, cancelled plans, missed time with loved ones and days off. 

It’s hard for people to understand how you are in so much pain and still functioning but I’ve learnt that I’m going to be in pain anyway so I may as well be productive and have fun. 

It’s a chronic disease, it doesn’t go away so if you give in to it today, what does that mean for tomorrow? And the next day? It’s still going to be there. You have to learn how to function with it or you’ll never have a good day.

My biggest advice to women out there who are confused and struggling – don’t isolate yourself. This disease affects nearly 1 in 9 women. There are so many of us that understand what you’re going through. Don’t be afraid to reach out and share your story.

Veronica Wallington

I’m no one important. But I do have a story. And it involves 15years with endometriosis painfully inflicting almost every aspect of it.

When I was 15 I started having these intense cramps. I never got my period and although I must have seen over 5 specialists they either said it was “in my head”, had to do with my diet, or depression and it was just anxiety pains. No one took it seriously even though I would be keeled over in pain, curled up in a ball, crying for hours feeling like my guts were on fire.

It wasn’t until I was trying to fall pregnant, 15 years later that I was diagnosed. It was my second fertility specialist (after the first said the same as all the previous doctors) that finally said the words “I think you have endometriosis”. I had no idea what that meant but there was some kind of relief to have a label to my years of pain. He booked me in for a laparoscopy and I went down the path of finally trying to remove years of pain and suffering in silence.

He found it on my uterus, tubes, ovaries, stomach and liver. I then went on to do a round of IVF and am so lucky to hold my miracle baby boy today almost 2 years after that first surgery.

I was told I would need another clean out surgery at some stage in my life. I had no idea it would be only 20months after the first. But again here I am post surgery, 2 days after another endo clean out. This one has not been pleasant. I’ve had post surgery fever and throwing up for hours not to mention the pain throughout my stomach and the gas pockets circulating my body. I’ve done this round as I am trying to fall pregnant again and with two failed IVF FET cycles my dr thought that maybe my endo had come back quicker than expected.

I will find out the extent of this past surgery at my follow up appointment. But I just wanted to tell someone my story.

Lisa Arends 

The awareness of endometriosis comes at a time when I’ve just been diagnosed with endometriosis at age 41.  I’ve also just been diagnosed with adenomyosis (the endometrium growing through the uterine muscle). I‘ve never had endometriosis before, only ovarian cysts.  Increased period pain, uncontrolled pain, led me into investigating why my periods were so bad. As women, pain is expected and I just put up with it.  I’m so glad I finally trusted my instincts that something was not right. The definitive treatment of adenomyosis is a hysterectomy. I’m very blessed to have conceived easily and naturally. I had 2 vaginal deliveries. I wish for no more children and I would be happy to have a hysterectomy.

Before my diagnosis I was aware of the complication endometriosis caused but completely unaware of the pain it caused.  I now have pain everyday and I await my gynaecology appointment to sort out my issues.  I’m a working mother of 2 young boys. These problems cause uncontrolled pain even with panadeine forte and exhaustion, plus exacerbate my anxiety and depression.
My diagnosis has come later in my life and has not impacted fertility. It’s such a devastating diagnosis for young women wanting a family. I hope the future will bring help to those who need it.

Jennifer Dunne 

Hi my name is Jennifer Dunne and I’m 33 years old. I thought I’d share a little about my endometriosis journey.

I have stage 4 endo and have been battling with the condition since puberty. It got so bad I had a total hysterectomy at age 24.

Coming up to the 10 year anniversary of my hysterectomy has me wanting to share my story and spread awareness. Please let me know if you would like to know more and thanks for helping spread awareness of this insidious disease. 

What You Need to Know About Endometriosis and Your Fertility

If you, or someone you know suffers from Endo, know that there are a collection of support groups around the country. You can find out more about them below:

Australian Support Groups

Australian Capital Territory

Canberra Endometriosis Network 

​Northern Territory

Endometriosis Darwin

Queensland

​Endometriosis Association (Qld) Inc.  – Qendo
Message Bank – (07) 3321 4408

Gold Coast Endometriosis Group

Endometriosis Support Queensland

Cairns Endometriosis Support Group

Townsville Endometirosis Support and Discussion Group

Tasmania

Tasmania Endometriosis Support Group

Western Australia

Endometriosis Sisterhood of Support Perth

​Living Endo in Mandurah

​South Australia

​Endometriosis Network Group SA

Endo Sisters Support Group SA

​New South Wales

Endometriosis Penrith Support Group

Endo No! –  Woollongong

​Endometriosis Local Support Groups in Australia 

KnowEndo

​Leeton Endometriosis Support Group

​Albury/ Wodonga Endometriosis Support Group

Victoria

​Endometriosis Victoria FaceBook.

Epworth Freemasons Endometriosis Support Group – Open to all Women

Epworth Freemasons Hospital, 16 Clarendon St, East Melbourne, 3002.

Bimonthly meetings, 7pm, last Monday of the Month. Contact [email protected]

Shepparton Endometriosis Support Group

Melbourne Endometriosis Sisters

​National Online Support Groups

Australian Women with Endometriosis Support Group

Adenomyosis Australia

Adenomyosis Australia – support group for partners of sufferers

Australian and New Zealand Endo Ladies

​Beyond Endo

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