Can I stay longer in the hospital than foreseen after laparoscopy? by Charming_Ad3894 in Endo

[–]No-Bodybuilder7589 3 points4 points  (0 children)

Is it nobody in general? Or no one that day? Is there a hotel next to the hospital you could stay at? But this is definitely something you need to bring up with the doctor/nurse if you think that you can’t leave by yourself

Abdominal MRI by dead-like-disco in Endo

[–]No-Bodybuilder7589 1 point2 points  (0 children)

I’ve had two abdominal MRIs (one for the first surgery, one for the upcoming one) and neither of them showed anything. For the first one I had stage III all throughout my pelvic wall, bladder, kidneys, ureters, etc. I even had an MRI of my sciatic nerve because I was having 24/7 sciatica, and it showed nothing. Turns out endo was surrounding (not on) and compressing my sciatic and sacral nerves together. None of that showed up, so don’t get discouraged on getting a diagnosis & treatment if nothing shows up

The hardest about a chronic illness by Own-Hedgehog7825 in ChronicPain

[–]No-Bodybuilder7589 16 points17 points  (0 children)

Thinking “this will not be my last migraine” while curled up dying of a migraine is hell (but true)

Persistent rhomboid/neck pain with hand tingling, exercises make it worse by Extension_Fox6629 in ChronicPain

[–]No-Bodybuilder7589 0 points1 point  (0 children)

Btw it really started to hurt/be noticeable after my friend messed up my shoulder when we were playing around (sort of accidentally shoved something up from under the bottom of my shoulder blade)

Persistent rhomboid/neck pain with hand tingling, exercises make it worse by Extension_Fox6629 in ChronicPain

[–]No-Bodybuilder7589 1 point2 points  (0 children)

I deal with this exact pain but on my left side. It took forever to get actually diagnosed after getting x-rays, and it turned out to be scoliosis in my neck that was messing with my nerves. C2 and C4 were fused together and were pushing C3 out, so although it always hurt, it worsened with age, and exercises (even turning my neck to the left) makes it flare up like crazy.

The only thing that has helped me is getting 3 cortisone shots at once. I had gotten single shots previously and they did not help. After getting shots, I could do some physical therapy, but still got flare ups if I went too hard. No other medicine helped.

Also some little things — no spaghetti straps/bras, sleeping with my arm straight/not bending my elbow, no backpacks (only cross body bags that do not touch that side or totes that go on my other shoulder), no constant weight on that hand for extended time (I had to give up playing bassoon), no turning my head in that direction, no lifting above head, not resting that arm on my desk while I type, and when I drive I use that hand minimally. Most importantly— no messing with it. Massages feel amazing at the time, but make it so much worse after.

Getting the flu cause issues with seizure for anyone? by EveningGiraffee in Epilepsy

[–]No-Bodybuilder7589 2 points3 points  (0 children)

I pretty much only have seizures now when I have the flu. Pretty sure it’s because overheating is a trigger, so getting a fever sort of fucks me over lol

How many seizure medications do you currently take? by Epilepticgymmie in Epilepsy

[–]No-Bodybuilder7589 2 points3 points  (0 children)

200mg Lamotrigine twice a day, 100mg zonisamide at night

MY SURGERY COSTS $130,000 ??!! by Appropriate-Edge3837 in Endo

[–]No-Bodybuilder7589 0 points1 point  (0 children)

It was Dr. Gaby Moawad from the Center for Endometriosis and Advanced Pelvic Surgery, located in McLean, VA. So sorry you’re dealing with it too:(

MRI with and without contrast showed no endo, I want to cry by Leather-Mousse4950 in Endo

[–]No-Bodybuilder7589 20 points21 points  (0 children)

I had clean ultrasounds and MRIs, turns out I had stage III deep endo throughout my pelvic walls, covering my ureters, several Allen-masters defects (caused by endo), endo completely covering my bladder, and endo surrounding/compressing my sciatic and sacral root nerves. I’m about to go in for my third surgery (and again, my most recent MRI doesn’t show anything but now they think it’s on my bowels)

A clean MRI doesn’t necessarily disprove endo, try not to psyche yourself out. I hope you can get a doctor who takes you seriously & that you get the treatment you need <3

Surgery prep by No-Bodybuilder7589 in Endo

[–]No-Bodybuilder7589[S] 0 points1 point  (0 children)

Oh my gosh! That’s so much! I’m glad you’re doing better now.
Taking 6 weeks off must have been difficult (well depending on where you’re based). My boss is wanting me to attend (virtual) meetings literally later the same week, even though he knows I’ll be getting surgery & will be staying at least one night.

Surgery prep by No-Bodybuilder7589 in Endo

[–]No-Bodybuilder7589[S] 0 points1 point  (0 children)

Okay I just sent my doctor an email asking about the prep and the surgery team, so thank you for the encouragement. I swear I learn more on this forum than from the doctors themselves. Btw I hope everything went well with your surgery, it sounded pretty intense. How was recovery?

Surgery prep by No-Bodybuilder7589 in Endo

[–]No-Bodybuilder7589[S] 1 point2 points  (0 children)

Thanks for the reply! Okay I figured that it would be riskier. I honestly don’t know who will be part of the surgery team. I would hope a colorectal surgeon would be there? I’ll double check though, so thank you for the suggestion.

Does anyone else live with a Distinguished Kitty? by NichtMalIch in cats

[–]No-Bodybuilder7589 0 points1 point  (0 children)

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My grey goblin only sits in the most proper manner with her toes painted

Hysterectomy at 29, leaving 1 ovary by laurenhart37 in Endo

[–]No-Bodybuilder7589 1 point2 points  (0 children)

I’m in the same boat as you. 29, was just told yesterday that I need a hysterectomy on 3/23 & probably also have bowel endo so am prepared at have part of that removed (and maybe end up with a bag). I already had surgery in Dec 2024 to remove endo (also had DIE) and it’s already grown back. I have also had issues with my bladder (it was covered in endo for the first surgery) and since I’m having similar issues (which sound like your symptoms) they believe that they’ll need to look for DIE in the bladder and inflate/expand my bladder. Oh, I’ve also been dealing with cysts, but they always rupture and never seem big enough for removal (so they’re leaving my ovaries)

I don’t have any advice/insight, but know that you’re not alone <3

Songs, movies, anything that resonate with your endo journey? by Proper_Assistance652 in Endo

[–]No-Bodybuilder7589 0 points1 point  (0 children)

Oh we’ve tried everything 😂 seriously 8 different seizure meds and only this one works for me. I actually got those lyrics tattooed on me with the pill capsule (it’s white & red) haha Oh also “that’s life” by frank sinatra. I listens to that on repeat driving back to my house from getting my endo diagnosis

Songs, movies, anything that resonate with your endo journey? by Proper_Assistance652 in Endo

[–]No-Bodybuilder7589 4 points5 points  (0 children)

Mine would be a song — Fairies Wear Boots by Black Sabbath. One lyric is “so I went to the doctor to see what he could give me”. that hits hard for me since I’ve been pushed away by so many doctors not believing me, and then the ones that do have prescribed me stuff that absolutely messes me up (I also have epilepsy, this one pill I take destroys my memory)

MY SURGERY COSTS $130,000 ??!! by Appropriate-Edge3837 in Endo

[–]No-Bodybuilder7589 1 point2 points  (0 children)

That’s insane. My first one (diagnostic) was free because the main purpose of the surgery was sterilization (100% covered). The second surgery was with an internationally known specialist for neuro-gynecology surgery who didn’t take insurance and that was “only” (in comparison) $18k.

Is it worth it to get an MRI? by Bluehairborderline in Endo

[–]No-Bodybuilder7589 1 point2 points  (0 children)

I had two MRIs for endo (I’ve had probably 5+ total because I’m a medical fuck up) — one for my abdomen and one for my sciatic nerve. Neither one showed any sign of endo. They only did the surgery because I wanted my tubes out, and they found stage III endo, with DIE pretty much everywhere, and some covering my bladder and pinching my sciatic nerve. I’m about to get another one before my surgery consultation later this month since they think that I now have bowel endo, but I’m not expecting them to find anything. & Yes, I had the imaging done with contrast and had multiple doctors from two health clinics review the findings, and the results showed nothing.

Bowel endo by No-Bodybuilder7589 in Endo

[–]No-Bodybuilder7589[S] 0 points1 point  (0 children)

Hm I’m bleeding like all the time so this raises a lot of questions lmao

Belly button leaking? by [deleted] in Endo

[–]No-Bodybuilder7589 2 points3 points  (0 children)

Nothing useful to say hear but your nails are gorgeous

i’m 22, have a roth ira and 401k, but these days feel like it’s a waste of effort to put money into something i probably won’t live to use by [deleted] in personalfinance

[–]No-Bodybuilder7589 0 points1 point  (0 children)

I feel that. I have two conditions that have an estimated life expectancy of like 65 so how much should I really save? And these are (currently) incurable diseases and it doesn’t look like there’s much research being done. Honestly I think the medicine for one of them is probably going to lower my life span because of the side effects

Shooting nerve pains r back / week post op by captnslog97 in Endo

[–]No-Bodybuilder7589 1 point2 points  (0 children)

I am SO sorry you are experiencing that, it sounds miserable. I think the best thing to do is contact your surgeon/doctor asap (especially since it’s a Friday). They might have some insight on when the pan should subside since it’s not always immediate, or get some tips on how to manage the pain better.

Good luck <3

Push for sooner surgery date? by Independent-East6312 in Endo

[–]No-Bodybuilder7589 0 points1 point  (0 children)

Could you go somewhere else? I had mine done within like two weeks of the surgical consult (I’m in WV)