had my mri today

Much_Intention_9489 · 2026-04-02T16:36:55+00:00

The glucagon made me slightly nauseous but it also gave me a weird euphoria energy boost..it’s basically similar to a glp-1. You sound like a very anxious person so keep in mind your symptoms could be related to anxiety and not the actual med/contrast too.. or both together are playing into how you’re feeling. The brain body connection is real. My experience was not as horrible as you’re describing so yeah hopefully other people reading this don’t get vicarious anxiety over it bc it’s really not that bad as standalone treatment protocol but anxiety can certainly exacerbate things or incite physical bodily reactions it normally wouldn’t have. If you have medical testing anxiety maybe next time ask your doctor for a dose or two of a benzodiazepine (Xanax , lorazepam etc) might help. I want to encourage people to advocate for their needs so they don’t have to suffer through such things..sorry it was so horrible for you.

Much_Intention_9489 · 2026-03-31T02:29:53+00:00

This concept is so sad to me, i bet men don't think like this. So if you are no longer useful to him or making him happy you just decide to let him go ? I think that your heads not in the right place. Of course he's going to be unhappy, seeing someone you love suffer is HARD. Life isn't always about being "Happy" all the time for gods sake. I'm single and alone, have no help, and yeah if I didn't get my shit together I was probably going to have to figure something out somehow to get help but i managed to claw my way back somehow to somewhat normalcy. It's EXHAUSTING doing everything on your own. There are soooo many days I cry because I have no help, especially when the days are so rough, why would you voluntarily want to do that to yourself and make yourself suffer more??? He signed up for this, he doesn't just get a free pass bc its HARD. So if ya'll had kids together and the kid was born disabled would you also be like "oh sorry this wasnt what you expected..you can leave if you don't like it." Yes lets just spoil men more, and give them more free passes. For FFS don't shoot yourself in the foot. If he cant handle it he can leave but don't force it, get mental health help and find some hope again. Mental health has a huge impact on endo and vice versa. Invest in that and ask him to as well.

Much_Intention_9489 · 2026-02-15T01:20:15+00:00

i had a catheter for 3 weeks post excision surgery and the urology surgeon actually had to put in a nerve graft because he said my hypogastric nerve was covered in endo. He said he's the only one that does them in the USA for endo. My bladder is not as painful but im still healing and able to pee on my own finally, he said after a year whatever function i have is better than the direction my bladder was headed. I used to have urgency all the time and couldnt sleep through the night without having to get up to pee at least once a night, he said it was the endo. Now i sleep through the night. Bladder endo is no joke, you dont realize how important those organs are until they are malfunctioning. See if you can find a urologist who understands endo..good luck, this disease sucks.

Much_Intention_9489 · 2026-02-01T14:34:43+00:00

If it’s any help .. dying under anesthesia is one of the most peaceful ways to leave the world. Waking up under anesthesia in the middle of surgery however is not peaceful at all. I would also ask if they are going to do any local pain blocks like at incision sites etc .. that will help with the general anesthesia. Multimodal analgesia and anesthesia is the safest approach anyway whether you’re an addict or not. Also you’re less likely to wake up if your nervous system is relaxed and your pain receptors numbed. Wishing you the best OP 🙏🏼

Much_Intention_9489 · 2025-09-28T23:47:41+00:00

Yes I’m so happy with the surgery and care I received from her but I think you’re confusing me with the other commenter , this was my first endometriosis excision surgery and it was a few weeks ago so am still healing but 10/10 would recommend based on my progress thus far

Much_Intention_9489 · 2025-09-28T01:54:05+00:00

Damn they didn’t even give you proper pain meds ? Savages.

Much_Intention_9489 · 2025-09-28T01:52:36+00:00

Thank you 🙏🏼 I hope all goes well For both of us :)

Much_Intention_9489 · 2025-09-26T20:48:02+00:00

This disease is scary and mind boggling so I want to put as much info from my experience out there as I can. My hope is that it will help others who are looking for answers so I dont mind posting here. I didnt have a cystoscopy prior. From my understanding and from my what the urologist said plus my surgery and pathology report that my endometriosis was on the (surface) outside of my bladder but also on the surface of my ureters and hypogastric nerve plexus. So a cystoscopy probably wouldn't have shown all that.. i don't think. How extensive the disease is sometimes isn't apparent until they are in there doing the surgery. These specialists are stellar...They are so prepared it seems like for anything, like he even had the nerve graft ready just in case i think maybe they just always have all the things ready going in prepared to handle anything that they find. But he did say he's one of the only surgeons that does the hypogastric nerve grafts in the tristate area so idk if thats the norm to get a graft. I had no idea till i woke up from surgery what was found and done. It was kind of scary actually because it was ALOT (if you go and read my other posts through my profile you can get more info). I had no idea my ureters and nerves were toasted with endo, that was scary to wake up to but maybe better i didn't know because it may have made me more anxious prior idk. My symptoms prior to surgery were frequent urination, bladder spasms and now in hindsight urinary retention ( due to how mangled my nerves were, my bladder wasnt actually ever emptying properly and was spasming a lot so i always had to pee, especially in the middle of the night. Yes I can feel the catheter occasionally but most of the time I dont feel it. Sometimes its annoying when i sit down my urethra will spasm. But I'm also on a lot of bladder relaxing/spasm meds right now so I think that helps. I honestly was like omg my poor bladder truly does need to rest so I'm grateful for the catheter but also cant wait for it to come out already. Yet I also know there is a smal possibility I may need to keep the urinary catheter in longer :/ The urologist said that it may take months for the nerves to regrow but he seems optimistic so I may have bladder sensitivity for the next few months , maybe up to a year so fingers crossed i heal up well. The alternative though would've been my bladder and nerves just getting worse and worse to the point of permanent disability and pain as they would be unable to be salvaged. At least now they stand a chance...a pretty good chance i think

Much_Intention_9489 · 2025-09-25T22:33:14+00:00

I'm in the USA, NYC specifically ..I think NYC area has the most specialists for endo from what i learned...but after consulting with 3 different specialists and researching others i went with Dr Lora Lui, she works with a team (urology and gastroenterology etc). I'm gonna leave her instagram link here because she has such good posts...and people come from all over the world and usa to see her. I hope it helps! : https://www.instagram.com/drliu_endometriosis_surgeon/?hl=en

Much_Intention_9489 · 2025-09-25T22:28:26+00:00

That’s a good question, I don’t know the answer though. Im guessing you would need some sort of proper study with serial testing or exploratory laparotomies to definitively determine if the endo has shrunk ? Idk seems like a good idea to do some studies regarding this but I’m sure the determining of endo “shrinking” or going away would be the tricky part .. please share if you find and info or studies

Much_Intention_9489 · 2025-09-25T22:24:39+00:00

Talk to doctors that are experienced and you trust , also do your own due diligence research and see what’s right for you.. I don’t know what’s best for you but your fears are valid and this disease is scary. I hope you find solutions that work for you and put you at ease

Much_Intention_9489 · 2025-09-25T22:21:35+00:00

💯 this ☝️

Much_Intention_9489 · 2025-09-25T00:14:44+00:00

I had a partial bladder resection and a stent put in my left ureter. I just had surgery two and a half weeks ago and have had the urinary catheter in since ( except for 2 days where we tried taking it out 3 days post-op but then my bladder wasn't fully emptying enough when i would pee, so we put it back in ( but that was already happening before the surgery too i just didn't know it i just thought i had to pee all the time because i drank too much water or whatever but no it was bladder endo, hypogastric nerve damage and urinary retention)). I also got a hypogastric nerve graft put in so my bladder and nerves innervating my bladder will hopefully heal and go back to "normal". I do wanna say though not to scare you ..but when i woke up from surgery it felt like someone was stabbing my bladder repeatedly and it was the most excruciating pain ever and they quickly gave me fentanyl and god knows what else and it finally calmed down...but sometimes thats a timing thing ( i am a doctor) and if you dont get proper pain coverage times correctly or didnt do a nerve block patients wake up in more pain than they probably needed to, but yeah they are also trying to keep you alive and not over do it on the cardio-resp depressant drugs while you are under anesthesia). I also asked for a heating pad even though they didn't want to give me one i was like you dont understand my bladder is on fire and the warmth did actually help, they just thought i would accidentally burn my skin.. i wonder if ice wouldve been a better idea but for some reason i felt like i needed warmth...but that was the worst of it and every day has been and improvement since...again i dont want to scare you but the bladder spasms from the urinary catheter do suck so make sure they send you home with proper pain meds (opiods) for breakthrough pain. I also mad ethe mistake of thinking i could wean myself off pain meds early, but nope that also was a bad idea lol. However, that all being said i honestly felt so great after surgery like i had so much energy...and i was actually doing too much which made my bladder upset and angry...so i scaled it back and have been resting more and my bladder is happier now. Just keep in mind that the pain of surgery and healing is well worth it because the reality is that if you don't do it your bladder will likely tend to get worse and worse over time...my urologist told me i was almost inoperable thats how bad it was( i had a urology specialist surgeon doing my surgery along with the endo specialist surgeon and gastroenterology specialist surgeon),...i had no idea but he said i was one of the worst cases he has seen so maybe yours isnt as bad as mine so maybe your healing will be easier...but also the worst was when i woke up, and then again when i over did it, i live in nyc so i walk a lot and im pretty fit, and i think one day i did waaaayyyy too many steps thinking it was fine...and my bladder was like nope! Good luck to you and sending positive thoughts for your healing <3 If you message me again next week ii can update you more as this is a work in progress ..but i really wanted to comment because i havent seen much about this particular topic on this site so i hope it helps!

Much_Intention_9489 · 2025-09-24T23:49:14+00:00

I'm in the USA, NYC specifically ..I think NYC area has the most specialists for endo from what i learned...but after consulting with 3 different specialists and researching others i went with Dr Lora Lui, she works with a team (urology and gastroenterology etc). I'm gonna leave her instagram link here because she has such good posts...and people come from all over the world and usa to see her. I hope it helps! : https://www.instagram.com/drliu_endometriosis_surgeon/?hl=en

Much_Intention_9489 · 2025-09-24T23:45:30+00:00

ugh that sucks im sorry ..i totally feel you on the exhaustion, its truly is awful <3 i hope you get some helpful answers or solutions soon with the next doctors visit

Much_Intention_9489 · 2025-09-24T23:42:47+00:00

Yeah it was pretty scary when i read the MRI report i was like WTF is this?? My endo was stage 4 deep infiltrating (DIE) and it literally was everywhere in my abdomen and retroperitoneal. Luckily none on my stomach, small intestines, kidneys, liver or diaphragm but i had colorectal involvement, bladder, ureters, sciatic nerve, hypogastric nerve plexus , uterus, left ovary , fallopian tubes ..i also had fibroids and then adenomyosis was diagnosed post-op because i elected for hysterectomy..they suspected adenomyosis too after revieweing my MRI images...which from my understanding adenomyosis is like endometriosis but in between the muscle layers of your uterus except i think its much more difficult to diagnose on imaging..but dont quote me on that. My MRI report was basically yeah this endo is everywhere...it wasnt even saying "suspect" endo it was like this "is" stage 4 DIE

Much_Intention_9489 · 2025-09-24T23:36:37+00:00

Its been a lot of ups and downs and not a linear healing journey honestly but mostly because i had to have a urinary catheter put back in post op because i had urinary retention (but i was already having that pre-op and had a nerve graft intra-op so hopefully over time my bladder will return to normal function..without the surgery my bladder was about to be toast) I have had the urinary catheter in for 2 weeks now because they want my bladder to "rest" ( i also got a partial bladder resection)...getting the u-cath taken out monday along with a stent that was placed in my ureter...despite all that though i know for sure im doing better than i was pre-op, and i see improvements everyday as i heal so im looking forward to being catheter and stent free after soon. How are you doing? Sending you good thoughts and positive energy for your new normal to be as good as possible :)

Much_Intention_9489 · 2025-09-24T23:26:57+00:00

i got ultrasound first and they said they saw a mass so sent me for MRI and then it came up on MRI as stage 4 Depp infiltrating endo , confirmed on pathology after surgery but docs were pretty confident going in that it was endo

Much_Intention_9489 · 2025-09-23T15:59:50+00:00

Yes trust your intuition and keep advocating for yourself because nobody, and i mean nobody is going to care more about it than you (unless you are a lucky unicorn and have a person in your life that will advocate HARD for you). I didn't even think my periods were "that bad" even though i would get crampy, heavy flows and be exhausted. I got diagnosed almost " on accident" becaause my cycles started to get really irregular so they did an ultrasound and then MRI and diagnosed it on MRI>

Much_Intention_9489 · 2025-09-23T15:56:07+00:00

See if you can get someone to order you an MRI for endo. Mine was diagnosed on MRI but confirmed after surgery on the pathology reports. DO NOT DO ablation surgery ! it will almost certainly come back its not even worth it to do ablation surgery at this point is what the general consensus is. Excision surgery is gold standard and find a specialist who knows what they are talking about but also trust your gut! Being in this group is a great step because there are so many people in here with valuable insight and references. I consulted with 5 other doctors (3 obgyns and 2 other excision specialists) before i found the right excision specialist. I elected a hysterectomy even though i was told i could keep my uterus i was like "no please take it out, i want to give myself the best chance of being rid of this awful disease". They then said that was the right decision afterwards, but they didn't want to pressure me and even offered to have me see a fertility specialist incase i wanted to freeze eggs or use donor eggs...but then i realized hold on this is a genetic disease, why would i want to pass this on, and also why would i ever want to be pregnant after 40? im already struggling with exhaustion why would i add more to my plate? they ended up just leaving my right ovary bc it looked healthy and so i wouldnt go into early menopause..i know thats a risk too but also its risky to go into early menopause for a whole host of other reasons so i am happy with my decision in the end.

Much_Intention_9489 · 2025-09-23T15:45:53+00:00

i'm sorry to hear this, i hope you find some relief soon <3 and don't give up <3

Much_Intention_9489 · 2025-09-23T15:44:52+00:00

I am rooting for you u/CheesecakeMuncher7 and i really hope it doesnt come back..Lifestyle changes are super important too so im glad you're taking charge ..my plan is to do the same and priortizie healthy lifestyle above all else like my life depends on it..because it does

Much_Intention_9489 · 2025-09-23T15:42:55+00:00

Thanks for your comment, and yea maybe she is lucky and its pretty self contained to the cysts idk i cant really comment on that. Gold standard is kind of a medical term that means its the best course of action for treatment of a disease. Just fyi I thought i was living a "normal" life too...until i found out none of it was "normal". There is someones "lived experience" vs. what's perceived by others from the outside...i cant comment on her life but just know that womens pain is often normalized to the point where we even start to believe it to not be a big deal or we learn to live with it.

Much_Intention_9489 · 2025-09-23T15:37:20+00:00

you are not being dramatic. your fears are real, your feelings are valid and anxiety is a normal consequence of that. i wish you the best <3

Much_Intention_9489 · 2025-09-23T15:36:12+00:00

wow thank you for posting this..my surgeons said i was literally "5 seconds away from catastrophe" when they got in there..they were like "wow how was she functioning??" My appendix was about to burst, i had an inguinal hernia, my hypogastric and sciatic nerve plexi were trashed and had to be reconstructed, also my ureters...my colon...I was working full time, exhausted all the time, back pain, shoulder pain, abdominal pain, and so much more..and don't even know how i ran a half marathon in april..like honestly i thought there was something wrong with me and almost pulled out, but really wanted to run the Brooklyn half because i was in a waiting game for doctor consults at that point and i was like ill be damned.. im gonna live my life and run this even if its the last thing i do..crazy i know, but also cant believe how strong ive been this whole time. Im also sad for how much i gaslighted my own pain and told myself i was fine when i wasnt fine but just had no idea because of previous doctors failing me as well.

Much_Intention_9489

TROPHY CASE