r/EndoAus

So I had my first lap last year by my OB/GYN. That was obviously a mistake. She did confirm endo though so that part was a win. She looked at the bowel but didn’t do a pull through? Idk what that is exactly. Basically I think she glanced and didn’t further investigate it all.

Here I am a year later with pain and awful, awful, awful constipation. I am wondering if she didn’t look at everything and it was missed in my bowel. Also, fyi I have had awful constipation for over a decade now and have been to 15+ doctors without any explanation besides of course IBS or anxiety. Like yeah I am anxious because I can’t shit!

Just wondering if you discovered more endo after an appointment with an actual Endo specialist?

Hello,

Does anyone have any advice on how to get prescribed a micro dose of GLP1s and/or low dose naltrexone 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

Hello, 23F. I’m writing because I’ve been having these ongoing flare ups for over three years and no specialist can seem to get to the bottom of it. I need the chronic illness community to help me point me and my doctors in the right direction.

My current medical history includes Endometriosis, Type One Diabetes, POTS, SVT, EPI, Gastroparesis, Narcolepsy, Sleep apnea, chronic fatigue, chronic migraines, suspected Sjogrens disease, connective tissue issues, hypotension, tachycardia, GERD, Fibromyalgia, Occipital neuralgia, Posterior tibial tendon dysfunction, pelvic dysfunction etc.

These flares first start around fall 2023, and I would have period where my cervical lymph nodes on both sides of my neck would swell. They didn’t cause any other symptoms for awhile, no pain or anything just inflamed nodes measuring up to 3cm at points showing hazy stranding indicating inflammation was present.

Fast forward a couple of months, these flares slowly started to come with more symptoms with the swolllen nodes.
Before a flare comes on, I typically notice a sore feeling in my throat (not sick sore, but like a muscle strain kind of sore), and my sweat/urine will smell slightly sweet.

Then that typically follows with severe inflammation, widespread body aches, drenching night sweats, fever, limited neck mobility, hip pain, chest pain, knee pain, constipation, shoulder pain, dizziness, debilitating fatigue, lack of appetite, nausea, sometimes a dry cough etc.

When these flares happen I have had imaging done, as well as labs. So far they have ruled out bartonella, toxoplasmosis, active EBV, all hepatitis related things, lupus, ANA was negative, spinal tap was normal, etc.

I have noticed possible triggers for these flares include, alcohol, immune support pills, mold exposure, excessive exercise or movement, stretching my neck, heat, lack of sleep, or after a sickness when my immune system is already weak.
I can’t pin it down to a single thing.

The next step is a biopsy w my ENT, but because the lymph nodes don’t stay swollen and are painful, she says it’s likely not lymphoma because it typically presents without pain and they don’t go away.

The only thing that somewhat helps during these flares is IV fluids, Torodol injection, medically administered fentanyl, or morphine. But even then, the medicine never really helps the neck pain.

Is there something my specialists could be missing? Has anyone else had these symptoms?
Could this be endometriosis effecting my lymph nodes?

I appreciate any help, at this point even if it is cancer I would just be happy and relieved to have an answer.

#endometriosis #typeonediabetes #flareups #autoimmune #lymphoma #lymphnodes #lymphaticsystem #chronicallyill #chronicillness #ent #rn #pac #moldtoxicity #heatintolerance #POTS #fibromyalgia

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!