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Endo.xoxo, Brisbane (2025)

26/06/2023

Who can relate? 🤣

25/06/2023

In the middle of 2015 I was referred to a Neurologist for the seizures I was having triggered by the massive amounts of pain I was experiencing at the time. This neurologist ran some tests and confirmed I had Epilepsy.

I remember the moment when My mum and I were sitting in his office and he officially diagnosed me. I cradled my head in my hands and began to cry. I had never felt so hopeless.

Epilepsy is a strange and frightening condition to live with. There is a lot of fear attached to the fact that my brain could begin seizing at any moment, and I don’t have any control over it whatsoever. I could be reading, eating, or playing with my dog, and this crazy thing can come out of nowhere. Always there, always waiting.

I remember telling him I was illegally using Cannabis at the time, it was the only way I could manage my pain and control my seizures. He said that Cannabis triggers seizures and that I should cut down immediately, and see if my seizures improved. They only got worse without Cannabis, and the pain was unbearable.

23/06/2023

First of all- bladder pain is never “normal.”

I have had bladder pain on and off for years, but I'm grateful it’s not one of my persistent symptoms associated with Endo.

If you’re having bladder pain, it’s something you should be getting investigated if there is no known cause as yet.

With bladder Endo, bladder pain can be a very common symptom. Endo on the bladder needs to be expertly excised and removed for the best outcome.

Do you suffer from bladder pain? Tell me in the comments below!

22/06/2023

By 2015, I had lost a little more than 50kgs, and my weight was down to 42 kgs at the time. I would wake up and vomit for about half an hour each morning. My Endometriosis has progressed to the point where I could hardly eat, and when I did manage to get something down, I felt extremely nauseous and bloated. The strange thing was I was met with compliments of how good I looked. “You’ve lost so much weight” “You look amazing” “You’re really looking well!”
It was so odd to me that people were so obviously pairing my thin appearance to the idea of being healthy. It was the sickest time in my life and it was probably the time where I received the most compliments. Go figure.

21/06/2023

This is a bit of a weird one, but I’ve included it because this is actually something I was pondering when I first got diagnosed...

I was looking for answers, reading through a whole lot of misinformation and theories and wondered if condoms could have had something to do with my Endo.

The short answer is- they don’t.

I knew at the time that Endo was some type of lesion or scar tissue, and wondered if it could have been some type of allergic reaction to something. I've always had symptoms of MCS and MCAS, and I'd always break out in rashes using any new product, food, with exposure to heat, and a whole list of other things.

There’s no evidence suggesting that condoms themselves have any affect on cause or symptoms of Endo whatsoever.

Have you ever wondered this- or just me? Tell me in the comments!

20/06/2023

At the end of 2014, before my diagnosis- the pain had gotten so bad that I began having seizures. I wasn’t able to eat, I woke up sick every morning and went to bed sicker every night. I felt like it was never going to end, and I embraced it as my new normal. But it was anything but normal. The doctors told me all my tests looked fine, so there was nothing they could do- and that I would just have to live with it. They didn’t know the amount of suffering I was going through behind closed doors.

19/06/2023

Got a family member who has been diagnosed and now wondering if you might have Endo, too?

You could be right,
However, everyone is different, and just because a member of your family has it doesn’t mean you’ll automatically have it as well.

Close relatives are 5-7 times more likely to be diagnosed with Endo.

Remember if you are experiencing symptoms of Endometriosis, it’s important to get help. Endo is a progressive disease, and it can get much worse if left instead of treated.

Reach out and have a chat about what next steps you can take- I’ve made all the wrong decisions on my Endo journey because I didn’t have someone there to tell me the facts. Happy to chat to anyone that needs resources or info.

Do you have family members with Endo? Tell me in the comments!

18/06/2023

Endo is not contagious. It’s a disease that scientists are still trying to find out more about- we do know that Endometriosis has a genetic component, and is not contagious.

16/06/2023

Menopause does not cure Endo.

Why?
Because Endo produces its own estrogen. Putting the body into chemical menopause with drgs like Zoladex and Lupron may only suppress symptoms, not the disease, and may leave you with lifelong debilitating side effects.

If your doc is telling you that menopause will “solve” your problems, or “clean” up endo- they’re straight up LYING, and you need a new doc.

15/06/2023

In 2014, I was still struggling with pain. Luckily it would only really be around the time of my period. I had severe cramping and heavy bleeding. I must have been to so many GP’s I’ve lost count- all of them telling me that there is nothing wrong with me and periods pain is normal.

14/06/2023

Zoladex does not treat or cure endo

If your doctor is telling you that it "shrinks endo" or trying to prescribe it to you after surgery to "clear up" any remaining endo- then you need a new doctor.

The only reason there would be any Endo remaining after surgery is because your doctor wasn't qualified enough to identify and remove it. Now they are trying to put you on a drug with serious long term side effects because they haven't done their job properly.

I said what I said.

13/06/2023

A lot of us have trauma associated with this question - is it an STI or Endo? I know because when someone presents with pelvic pain one of the first things is the doctor will get you to do an STI test.

This post is to educate on the similarities of STI’s and Endometriosis symptoms.

Your pain is valid.

…..

There are symptoms of Endo and STI’s that can be similar.

-Painful urination
-Pain during s*x
-Pelvic Pain
-Re**al pain

If you are experiencing any of these symptoms, please see your GP and get tested immediately. Although there are symptoms that are similar between STI’s and Endo, your pain is still valid, and believed.

Stay safe!

Share this on your story to educate the community about the similarities!

12/06/2023

Okurrrrrr

11/06/2023

Endo stole my life from me.

But I’m working on getting it back.

The journey towards healing is a long one, filled with many obstacles. Sometimes it seems like I work out one thing and I’m hit with three more problems. It’s all part of the journey.

Endo has stolen relationships, work opportunities, and my ability to live a healthy life in previous years.

But I can say that I have learned a lot about how the world works, how the medical system operates, the level of emotional intelligence and empathy people have when being confronted with the stories of my journey through the system for 19 years.

Endo has taken from me, but it has also given me things I would have never experienced if it weren’t for this journey.

How has Endo impacted your life? Tell me in the comments!

09/06/2023

A close family member of mine had persistent bladder issues at a young age. The doctors ended up doing investigative surgery and found a whole lot of scar tissue near the bladder. They never knew what it was.

Later on in life they had a scan and their one o***y was fused to their uterus.

We only put two and two together when I was diagnosed and we understood that all this time they had been dealing with symptoms of Endo.

The exact cause of endometriosis is not fully understood, but it is believed to involve a combination of genetic and environmental factors. Having a family history of endometriosis does increase the likelihood of developing the condition, as there may be genetic predispositions involved. However, it does not guarantee that your children will also have endometriosis.
It is estimated that the risk of developing endometriosis is approximately six times higher for individuals with a first-degree relative (such as a mother or sister) who has the condition compared to those without a family history. However, it is important to note that many individuals with endometriosis do not have any family members with the condition.
Do you have family members with Endo? Tell me in the comments!.

08/06/2023

In 2013, at the age of 22, I remember getting my period and being in so much pain that I felt like I was going to faint. I stumbled out of the Toilet, into the next room, and fell on the floor in absolute agony. I screamed for the pain to stop. I was living with my ex-partner and a housemate at the time, my partner had gone out, and my housemate came running in asking what was wrong. I remember I kept saying, “I don’t know. I’m in so much pain. I don’t know what to do” He sat with me as I curled up into a ball on the cold bathroom floor and cried until I could manage to move again. This is the one of the many memories of my Endometriosis pain coming on with a vengeance. Little did I know it would get much worse, before it would get better. This disease is not for the faint hearted- I can tell you that much.

07/06/2023

I started swimming at the end of last year and it was magic! I’d do my little granny aqua-aerobics exercises in the pool and it was really so relaxing and satisfying.

It’s hard to exercise when you’re in pain, and dealing with other symptoms of Endo. Be kind to yourself and do what you can. I find some days I can push harder than others, but if my body says no, I need to listen.

While it's important to consult with your healthcare provider for personalized advice, in general, exercise can be beneficial for individuals diagnosed with endometriosis. Engaging in regular physical activity can help manage symptoms such as pain and fatigue. Exercise promotes circulation, reduces inflammation, and releases endorphins, which can contribute to pain relief and improved overall well-being.
However, it's crucial to listen to your body and adjust your exercise routine accordingly. Some individuals with endometriosis may find high-impact exercises or activities that put pressure on the pelvic area uncomfortable or exacerbating their symptoms. It may be more beneficial to focus on low-impact exercises like walking, swimming, cycling, or gentle stretching.
Remember to start slowly, gradually increase intensity, and pay attention to any discomfort or pain during and after exercising.

What kind of exercise do you find most manageable? Tell me in the comments!

05/06/2023

In 2018, I studied Community Services while I was doing my Legal Services course. We had to organise Workplace Experience, so I went to volunteer at a Sexual Health Clinic for a month. I pushed through and ended up completing my placement, but it was one of the hardest things to get up every day and drive into the city, find parking and walk to the office. For an able bodied person it would have been a normal day- for me it was a huge challenge, but the end goal in mind was what kept me going. I was also working with an amazing group of team who were changing lives- and I loved being a part of it.

I have always been interested in education, and specifically having access to the right education when it involves your health and your body is extremely important. I know how hard it is struggling with a chronic illness and still getting incorrect information about your disease from 99% of doctors you see. As if we are not dealing with enough already.. I hope to educate as much as I can, and shine a little light in all the confusion that is Endometriosis.

Endo.xoxo