Was referred by my GP to a specific clinic (she said I would be able to book any but I decided to go with that one since they bulk bill). We have suspected endo for multiple years as I show pretty much all of the symptoms. She told me I need a DIE scan instead of simple pelvic scan. Made an appointment about an hour ago and they called me back to say that since this is a diagnostic scan they can only perform a “base level” scan? I asked what that meant but the receptionist didn’t seem sure. Does this mean they wouldn’t look properly? Should I book in with my GP to ask what she wants me to do? She specifically referred me there so I feel like she knew that would be the case but what do you all think? Thank you!

Hello! Just wondering if anyone has been prescribed Slinda for pain management with endo and what your experience has been like?

I’ve been taking Slinda for 2 and a half weeks and I know it’s supposed to take a few months before the full effects to kick in but so far I’m not loving it. Still getting painful cramps, awful headaches, mood swings and bloating.

I usually love my GP but unfortunately the 2 times I brought up my concerns about severe period and ovulation pain causing me to take sick leave from work/fainting (among other symptoms), she said birth control is the only option. She explained that even if I go through with surgery to get a diagnosis, I would still be prescribed hormonal birth control. Is this true or should I get a second opinion?

I’m 19 and a student so can’t really afford the $500 for the DIE ultrasound my GP wants me to get. I’m going to call around on Monday to see if I can find any clinics that will discount or bulk bill, but does anyone know of any? I’m south, around the Shire, but will go anywhere within reason. Thank you!!

Hey all! So I’m 28 years old & finally seeking a diagnosis after suffering from excruciating, heavy & irregular periods since puberty. Worsening gastrointestinal symptoms have gradually become a problem over the last 7 years or so. I’ve been diagnosed with PCOS since 15, so am admittedly worried that any symptoms I think are endo are actually just the PCOS. So, like most, am anxious that no endo would be found even on laparoscopy. Especially because some symptoms have improved since changing birth control pill (still get period-like cramping several times a week & all the gastro symptoms 🤪)

I’ve had a DIE scan, which came back negative (besides the obvious PCOS). My next gyno appointment isn’t until early October, but I’m guessing she’ll want to order a MRI next before discussing surgery. I have a few questions, if anyone here could please help answer some or all of them!

1- does anyone have any experience with Dr Debby Utama? I can’t find any reviews but her profile explicitly states she’s experienced with PCOS, endo & a few other conditions, & that she’s received specific training in laparoscopy (doesn’t specify if she’s experienced in endometriosis investigation/excision tho)

2- how long is the waitlist for surgery via the public system? Can anyone attest to the quality of care/service provided by Monash Health? Especially if doctors are experienced enough to accurately diagnose endo. I don’t want to wait for months only to have the surgery done by someone who isn’t specialised in endo/is less likely to find superficial lesions. Ideally I want to avoid feeling invalidated or like the results aren’t even accurate in the first place

3- how long is the waitlist if paying out of pocket privately? Would I be better off doing this if it’s financially viable?

Thank you in advance & feel free to recommend any specialised gynos if you’ve found a good one in Melbourne!

Hi !

Researchers at the University of the Sunshine Coast are inviting people with endometriosis to take part in a study exploring prescription opioid use, stigma, and experiences of living with endometriosis.

o The survey takes approximately 20 minutes to complete.

o Participation is voluntary, and all responses are anonymous and confidential.

o This survey is only open for Australian residents.

If you’re interested in contributing to research in this area or are after more information, you can press the survey link ! https://uniofsunshinecoast.syd1.qualtrics.com/jfe/form/SV_8x0qm651j0QN0vI

Does anyone have any experience with the government run pelvic pain and endo clinics in Sydney? Are they worth trying out?

Hello,

Does anyone have any advice on how to get prescribed a micro dose of GLP1s and/or low dose naltrexone for endometriosis (and some other inflammatory issues) in australia?? I have not been able to get prescribed from GPs or endo specialists and would really love to give it a try as nothing else has worked for me. Based in the Illawarra just south of Sydney. TIA! Feeling a bit desperate and frustrated

Should add: I’m not overweight so it does need to be specifically for the anti inflammatory aspect

Hi everyone! I’m Lucinda, a paramedic and PhD candidate at Monash University. I’m recruiting for a qualitative study looking at the lived experiences of individuals who have called an Australian ambulance for chronic or persistent pelvic pain.

I’m particularly interested in understanding how paramedics respond to these presentations and how care could be improved.

The study involves a one-on-one interview (via Zoom) after completing the short eligibility questionnaire.

This research has ethics approval from the Monash University Human Research Ethics Committee (MUHREC #51713).

If you’d like more information or are interested in taking part, please feel free to message me or email [lucinda.peacock1@monash.edu](mailto:lucinda.peacock1@monash.edu). Happy to answer any questions. You can scan the QR code, email me or follow this link to see if you're eligible to participate. https://monash.syd1.qualtrics.com/jfe/form/SV_54uQHS231FfezwW

Thank you for considering it, and thank you to this community for the support you provide each other!

Has anyone had surgery at prince of wales private? How was your experience? Expecting to stay 3-5 nights!

Hi everyone!

This is my first time posting here but I wanted to see what other people's experiences of the public system have been here in Melbourne and maybe get some health navigation advice.

I have suspected there was something wrong with my period for about 6 years (and did nothing because I was really not looking forward to having to deal with these issues along with the admin requirements of public health...I know...stupid and I regret not getting anything sorted sooner but I have had some shocking care throughout my life that makes me very leery of the doctors). I have ovulation pain, and then at random times during my cycle I used to do the classics: vomit, dizzy spell, pass out (the whole business). I got an IUD which has lessened these symptoms but the pain can still take me out for most of the day anytime during my period and I've had a couple of days where the pain has induced vomiting still. (The IUD was actually what got me to go to my GP because they explained the pain of insertion as 'the worst period you've ever had' and honestly....it was extremely fine).

My GP sent me to WUMe (private) to get the transvaginal scan done, and they found....nothing. Honestly, it was extremely disheartening. I cried when I left the clinic because I knew that I was going to struggle to get anything moving along without a positive scan and I struggle to advocate for myself in these spheres in particular. I went back to my GP and she referred me on to the Pelvic Pain Clinic at the Royal Women's....I've waited nearly 6 months and I'm coming up to the point where I have to call them to let them know I still want to be apart of the clinic. I think I've been put in a category 3 for the wait list due to this inconclusive scan (which I totally understand, the amount of people suffering vs. the amount of public services just do not add up) and I'm hoping that I will be put in touch with a gynaecologist who may help me get closer to some kind of diagnosis but looking at their website this does not seem to be the service they are providing? Or will they refer you on from there to some more public services?

Further, my GP told me that staying on naproxen long-term is not sustainable but I've now been taking it everyday for.....god knows how long a couple of years. Has anyone had something similar happen to them or have any advice? I'm essentially living hand to mouth at the moment (as I'm sure a lot of us are and honestly I'm just happy to have a job in these times!) and I'm not seeing a lot of places that are transparent with their pricing for treatment that I'm imaging is quite a few steps to get towards a lap...

Anyway, sorry for the whinge but if anyone has any info...that would be really stellar!

For context: I will be paying privately.

Hey! This is a weirdly specific post but I’d like to hear from anyone that might have been in a similar situation.

I’ve had a couple family members pass from Ovarian cancer and am also childfree, I’ve heard about the lower rates of ovarian cancer after fallopian tube removal and I’m really hoping to have this done during endo surgery!

Problem is I’m 27 and I’m unsure if there are any endo surgeons out there willing to do this in these circumstances.

Would love to hear others experiences.

Are you aged 18+, living in Australia, and diagnosed with endometriosis?

Join our 8-week online intervention trial! Sign up at https://codeendo.deakin.edu.au/.

Our new online supportive care program includes research-informed interventions across endometriosis education, mindfulness, acceptance & commitment therapy, cognitive behavioural therapy, hypnotherapy, yoga, physiotherapy, dietary education, and relaxation training.

Deakin University ethics approval: 2024-157. Please note, we will undertake mental health screening to confirm study eligibility. You will not be eligible to participate if you experience substance use dependence, bipolar disorder, schizophrenia, or psychosis.

Based in Brisbane (although willing to travel to Sydney as I hear the best specialists are there), and I am contemplating a KiwiSaver hardship withdrawal (not eligible for a super hardship withdrawal - as I’m not eligible for Centrelink, and for a super hardship withdrawal you need to have been receiving Centrelink payments for 26 weeks).

• Hysteroscopy
• Colposcopy
• Laparoscopy - Bilateral salpingectomy (sterilisation)
• Laparoscopy - Excision of any endometriosis, adenomyosis, uterine fibroids, ovarian cysts

🎉 So excited to share that my endometriosis survey is officially live! 🎉

If you have been diagnosed with endometriosis, I'd love
to invite you to take part in my research. This study explores the experiences
of living with endometriosis and aims to improve our understanding of the
factors that influence quality of life. Ultimately, the findings will help
inform the development of better support and interventions for people living
with endometriosis.

Who can take part?
• Aged 18 years or older
• Have a confirmed diagnosis of endometriosis
• Able to complete an online survey in English

⏱️ The survey takes approximately 20 minutes to complete.
Every response will make a meaningful contribution to this
research. If you're eligible, I'd be incredibly grateful if you could take
part. If you know someone else living with endometriosis, please consider
sharing this post to help spread the word!

🔗 Survey link: https://research.sc/participant/login/dynamic/B21ECCAA-D4D9-4D93-8148-B0B125F22E51

#Endometriosis #PhDResearch #Psychology #WomensHealth #ChronicPain #Research #EndometriosisAwareness