11 Australian Women Share Their Endometriosis Stories

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.

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?

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.

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.

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

Source: Read Full Article

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

J – 24, South Australia

Erin Barnett

Emilia Victoria (@livingwithendometriosis__)

Angie Kent

Nalini Natesan

Taleah Ratz

Courtney A

Penny McNamee

Marjolaine Guaresi

Nicole Staff

Kayla Itsines

Anonymous

What You Need to Know About Endometriosis and Your Fertility

Australian Support Groups

​National Online Support Groups

National Online Support Groups