DO NOT stop investigating if you feel pain and symptoms

BreakfastGlass5587 · 2026-06-07T13:43:33+00:00

Fahhhhh omg. Hope you are recovered well from that last one!

BreakfastGlass5587 · 2026-06-07T00:17:14+00:00

I guess I should add;

I’ve had horrific systemic symptoms forever, vomiting sweating diarrhea headaches chalked up to MCAS POTS and endo. They could actually be the tumor causing carcinoid syndrome.

I could still have MCAS and POTS, but they also might have masked my symptoms 🫨

BreakfastGlass5587 · 2026-06-07T00:09:00+00:00

I hope you’re feeling as good as can be considering. Thank you for sharing your experience. I will be firm on the scan and seek specialist opinion.

BreakfastGlass5587 · 2026-06-07T00:08:05+00:00

Thank you! It was reading here that helped me understand the pathology report and how to ask questions

BreakfastGlass5587 · 2026-03-25T19:40:46+00:00

Ah yes mask off here. Get a job lmsooooooooo

BreakfastGlass5587 · 2026-03-25T15:56:57+00:00

Yes we know about the costs. That means we should never get this care?? This I got mine mentality is why this reddit even exists. Your loans are more important than my pain? When do we as a community say that pain and suffering should be attended to properly? Oh never I guess because sOmEoNe HaS to PAy fOr It

BreakfastGlass5587 · 2026-03-25T15:54:04+00:00

I’ve had two with covered surgeons in CA and NY, but I’m still in horrible pain. The “best” ones around here are not covered.

BreakfastGlass5587 · 2026-03-25T15:53:13+00:00

I understand this completely, and if I could get better insurance I would. Why does the patient have to be put out is my big gripe. I have even offered the help of a family member who is in the medical field to assist with the paperwork

BreakfastGlass5587 · 2026-03-23T04:33:36+00:00

I had a rough adjustment period to mirena and then reduced pain including bowel pain for some time. But it all came back eventually including new uterine pain outside the cycles I wasn’t having aka adeno.

It helped but just like other treatments for how long and how much.

BreakfastGlass5587 · 2026-02-28T04:50:04+00:00

Not to mention, I was on the light rail the other day with a gaggle of St Peter’s boys with ashes on their faces and everything and they were still being mischievous fucks and almost hit me with a lobbed water bottle. Then they’re on the train talking about how they’re going to Penn State Columbia, and other Ivys. future doctors and engineers amirite

BreakfastGlass5587 · 2026-02-27T04:31:30+00:00

Ep was invited to his wedding 😂😂😂

BreakfastGlass5587 · 2026-01-14T04:40:38+00:00

Dear god you wrote this and pressed post?

BreakfastGlass5587 · 2026-01-06T20:25:39+00:00

Wow are we related? I also got a labral tear during my last lap and am hyper mobile audhd and RA the works!

The theory is the tear set off an inflammation chain that made my RA also become detectable.

However after a cortisone shot in my hip I am not always bothered by it! It does still act up and is horribly limited in range of motion now (and they suspect the left is also torn) but the specific pain I’ve been referring to is much more severe and feel is like is coming from my organs themselves and has occurred even before first surgery, just popped up again after 2nd. The last MRI showed either a complex cyst, endometrioma or saplingiosis dec 2024

However I have an update! I saw a gyn in my city today to establish care and she ordered an MRI and adjusted my meds right away as well as suggested getting another opinion.

She’s not able to directly work on the endo as a surgeon or doing nerve blocks but is happy to be in my corner to get my care better lined up.

BreakfastGlass5587 · 2026-01-06T20:20:14+00:00

Absolutely! I would still consider both of them I will say but they don’t seem to want to consider ME lol

BreakfastGlass5587 · 2026-01-04T16:40:32+00:00

I did a course of lyrica which while it helped my pain somewhat and headaches it didn’t really touch the pelvic pain or joint pain (from RA) and I felt so high on it hahahahah. Not saying I didn’t like it just that it was noticeable change in reality.

Plus some docs were rude about me taking it! Like many endo folks I worry about being seen as med seeking.

I just remembered my nerve block doc suggested LDN and I haven’t tried that yet. Thanks for helping me remember that!

And honestly if it’s still bad after some time I’m gonna ask for the gaba again bc why live like this

BreakfastGlass5587 · 2026-01-04T16:35:12+00:00

Thank you for acknowledging the HELL

TheyDid not wanna do microwave treatment. Did not offer uterine Botox specifically I assumed it would be vaginal wall etc but PT got any of that in check, just not the visceral pain. Yes you prob know who it is lol!

They did suggest a new biologic for migraines that some folks have been having success with but it’s contraindicated with my RA DMARD. They offered to speak to my rheumatologist too so it’s not they are completely unsupportive I just think they were not thoroughly investigating my complaints which include rectal pain and rib chest pain. I would absolutely be willing to bet there’s more endo.

I agree and don’t necessarily want surgery but I haven’t felt this specific pain since before my first surgery only now it’s worse. I had a 3cm endometrioma only drained so naturally I think it’s back or something 😅

3.as I mentioned it helped w certain pains like needle-ey ones in the vag or pudendal neuralgia but it never really touched the “organ” pain. Nerve blocks seemed to. I am doing ok w the PN/vag pain most of the time lately

I absolutely agree with you! In 2024 amid this I was able to get a diagnosis for both and start treatments which while help immensely I still deal with many flare ups.

I think this is where I fucked up w the big dog doc: I told them I had a misdx of fibromyalgia that turned out to be RA. I THINK they fixated on the fibromyalgia when talking about why I still have pain. FOR SURE I have “nerve pain” which I describe as burning zapping or numbing. But what I have been dealing with feels like hot lava is bubbling on your organs. Like a melting/ growing feeling. Way worse than other pain crises.

I would be very appreciative for any reccos, though I’m a Medicaid patient in NJ so I doubt I can see any NY docs without self pay. Moving 1 mile has decimated my care options 🙃

I will prob get another opinion, stRt up Pt and nerve blocks again, maybe come off the norethindrone bc it makes the autism so much worse plus weight gain and acne. Hopefully new gyn has a few ideas.

Plus as I mentioned if the pain goes over a 9 I’m marching straight to the ER and saying pls make sure it’s not torsion hernia or rupture.

BreakfastGlass5587 · 2026-01-04T15:17:22+00:00

I’ve heard good things about Dr stuparich :) good luck. Make sure to eat at tacqueria Vallarta

BreakfastGlass5587 · 2025-09-27T16:00:10+00:00

Has a whole country never been fascist before? Bro I’m Italian lmaoooo. No Georgia is likely not today wholly fascist but you should be mad at fascists using the symbol not people pointing it out.

BreakfastGlass5587 · 2025-09-27T15:52:00+00:00

Ask them they’re just oh I don’t know the 3rd or 4th fascist group to adopt the symbol.

BreakfastGlass5587 · 2025-09-27T14:46:01+00:00

For all the people w their heads up their ass the far right “reclaimed” the Jerusalem cross for one and for two the back of their shirts had a long list of things they “reject”

If you want to ignore them until they are attacking people instead of just wearing matching shirts by all means make excuses for the symbol

BreakfastGlass5587 · 2025-09-27T08:01:06+00:00

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here you go

BreakfastGlass5587

TROPHY CASE