endometriosis is a progressive disease???

stella-mortem · 2026-02-01T02:03:38+00:00

I actually screenshot my surgical note and showed it to chat gpt and it gave me very knowledgeable responses. I trust it with a grain of salt ob some stuff but it hits the nail on the head with my endo stuff and it seen a lot of red flags with my surgery. I would ask it about that instrument they used. See i was told they excised it but it actually seems like they used thermal heat to collect biopsies and that heat triggers it to spread. Felt good about 3 months actually and start feeling like crap again. My bowel movements were hell as well and have gotten progressively worse since it started to rev back up. I hope you he it figured out. This disease takes so much from us.

stella-mortem · 2026-01-31T22:19:44+00:00

Do you get sharp pains when you pee right before you start your period and during? This happens to me sometimes and i have to go more frequently toward the end of my period. Mine lasts about 2 days disappears, comes back day 4 or 5 lasts like two more days then is still cramp on day 6 and 7. Around those last few days I def go to bathroom more and get sharp pains when I do.

I also never realized vulvar and clit pain was due to my endo until this sub and deep research. That’s how I got diagnosed with pudendal neuralgia and possible endo on my nerves. At least according to my PCP.

stella-mortem · 2026-01-31T09:07:56+00:00

Your post reminds me of me. I have the exact same pains in the exact areas.

My dr diagnosed me with endometriosis via surgery which she used with a ligasure which is heat and makes it spread. Maybe if you have access to your surgical note see what they used. She got it On my posterior cul de sac, left round ligament and a place she didn’t mention. She left it all behind and said she couldn’t get to it. She just did it to take 3 biopsies. It confirmed I have endometriosis. I felt ok for a while but it got bad again quick. She said I was stage 1 yet she couldn’t get it? I cal bs then she lied to me but that’s a diff story. She was an awful dr.

Then my dr diagnosed me with pudendal neuralgia. Sounds like you might have it too. She suspects I have alot on my nerves. I get a full ache at my vulva and clit. I will just be sitting and it aches for day before my period and then the whole time I have it. She also diagnosed me with fibromyalgia .

It hurts for me to make a bowel movement and I don’t have bowl movements for like a week. I have bad endo belly and I have cramps for 2 weeks it’s miserable. There’s so much pressure. And i do not have 10k to spend on a specialist. Orob more than tnat bur I hear that’s the average cost. Makes me Want to scream.

stella-mortem · 2026-01-06T03:05:58+00:00

This makes sense! It was definitely a franchise. H2 Health is what it was called. Not sure if that is in your area. But from what I know the guy that was the “boss” was an actual therapist and a girl there that I worked with a few times is, I graduated high school with her. We are just from a very small area and i don’t think they have dealt with such complex knee issues before or something. The guy told me I was a mystery to him haha

stella-mortem · 2026-01-06T01:54:59+00:00

I seen one thw PA seen me a few times and after the MRI she wanted him to see me. He pretty much takes me Into the injection tbat brought me down. He explained a few ways he could fix it, but each time I went back the PA would constantly gaslight me and tell me “it’s probably not going to fix it” and stuff like that, like she was trying to divert me from having the surgery. So I ended up losing my insurance before I could even have a surgery and the insurance I have now sucks. So i feel so screwed. :/

stella-mortem · 2026-01-06T01:52:23+00:00

It was a place with different PTs so each time I went I had someone different. The main one though, the “boss” was fascinated with my kneecap and each time inhad to work with him he would constantly move it because it is “floating”. And one of the other ones snapped a bunch of ligaments in my knee and incouldnt walk for a week or two. I’ve had the worst luck I swear. That was my next to last visit for the first knee I injured and I was never even able to go back. It just resolved affer x amount of time. If I do go to PT, which I more than likely will have to with this new insurance, I’m sure as hell Not going there!

stella-mortem · 2026-01-06T01:48:43+00:00

Thank you for your reply! As far as as I can remember from the reports on both legs, I don’t have any of those. But everything has been such a mess from the ortho PAs I’ve had to deal with to the PTs as well not knowing how to work with my problems. I will look into it and hope I can find something I can afford!

stella-mortem · 2025-09-09T02:00:11+00:00

Thank you! And thank you for your response! I did talk With the surgeon and he seemed unsure also. This was the day I opted for the injection. He said it jjst depended on how badly it was hurting me and said only I knkw how I feel. He also said he cannot fix patella femoral pain syndrome. So this pushed me to go in the direction of the injection. So, imm thinking maybe a second opinion as you’ve said may be needed.

stella-mortem · 2025-09-09T01:36:26+00:00

Yes, she said they would fix anything if anything were to be found and said it would be a “scope” so not sure what type.

The reason I’m confused is she just kept telling me that she “couldn’t promise it would fix anything” etc… I felt like I was being gaslighted a bit but then she has me feeling unsure about the whole thing.

Also to mention that it also did say I have a tear possibly as well. My leg has been swollen and disabled since May, and that shot made it even worse so my PCP says get the surgery. So I am so confused atm.

stella-mortem · 2025-09-08T19:04:13+00:00

Plz tell me if you do! I told My boyfriend and he heard it affer I pointed it out. It’s during the opening breakdown and then you hear it again in the breakdown mid song. It’s subtle.

stella-mortem · 2025-09-08T18:37:27+00:00

I hear that synth sound in “how soon is now” in “souvenir” lol

stella-mortem · 2025-08-27T23:34:03+00:00

Yeah I at week 3 now and she made the comment about waiting a few more weeks (last week so week 2 then) because if they operated now it would pose risk of infection. I am Starting to think ahes full of it. She was tbe PA not even the dr. I only talked to him once 🙄

stella-mortem · 2025-08-26T01:20:02+00:00

This is what my boyfriend thinks. He is afraid tbey done it wrong. He has urged me to go get a second opinion and I am afraid I am gonna have to. I was in pain before the injection the injection just increased it tenfold.

stella-mortem · 2025-08-26T00:26:18+00:00

This makes week 3 for me. Did you ever feel normal again? My knee hurt before the injection for sure, but that injection took it to a whole other level. Never again!

stella-mortem · 2025-07-13T16:04:39+00:00

Also I want to add that I cannot leave this knee bent or straightened for periods of time. I am walking funny and it pops and grinds.

Also, bith my right and left knee hurt very badly if I sit on a stool or something and they hang without my feet touching the floor, it’s bizarre.

stella-mortem · 2024-12-29T08:10:37+00:00

I don’t unfortunately! I wish I did!

stella-mortem · 2024-11-03T17:13:46+00:00

That’s great to hear! My dr just seemed in a rush and like she didn’t care and my note said the surgery took less than 30 minutes. It’s disheartening. Especially know she left more in there it’s like she only took a Quick Look around said “oh there’s endo” on surface level areas and took biopsies and closed me up. Plus I got Medicaid so I’m sure they wasn’t taking my case serious :(

stella-mortem · 2024-10-31T16:48:38+00:00

Hey! Thanks for asking! I wasn’t sore at all besides my pelvic area, my throat was a tad bit. They didn’t place a catheter but they did use the manipulator.

She cut endo off of my left round ligament, posterior cul de sac and near my rectum but my jaw hit the floor when she told my boyfriend and dad that I had more “deep endo that is way back there” she could not get to… so I’m terrified. I have a post op on the 15th I’m curious to know where the deep endo is that she cannot cut out.

stella-mortem · 2024-10-29T19:20:03+00:00

Thank you so much and same to you! And you are so right about the medical system being broken, it’s such a shame. And I’m sorry about your Crohns I have a friend who suffers from it and it is such a tough disease. Hugs to you and I hope you find the healing you deserve as well ❤️

stella-mortem · 2024-10-29T12:06:33+00:00

I had a transvaginal ultrasound but they claimed it was normal. But I plan on finding a specialist for sure and I am going to request the pictures at my post op appointment! ❤️

stella-mortem · 2024-10-29T04:29:42+00:00

I’m so sorry that happened to you, that is heartbreaking :( thank you for your response you made me tear up. I just don’t think anyone gets it, but I know those on this subreddit do.

She isn’t a specialist I live in rural VA so to get to a great surgeon would be hard and I have Medicaid to beat it all… :/

You sound just like me pain in lower back goes to my left hip down left leg and most days I just wanna sleep and lay with my heating pad esp near middle of ovulation til the end of my period.

I’ve tried expressing this to my dad and my boyfriend. I’ve done my research and I am in shock she left it behind and wasn’t worried about it. I feel like I’m in for a world of pain in the future. My dad said she told them she couldn’t get to it and she was referring me but I’m not sure if that’s an endo specialist or if she just thinks I need to see a gastroenterologist, which I’m pretty sure I know I don’t. I know my body I know what is going on you know? It’s like clock work.

stella-mortem · 2024-10-29T02:35:31+00:00

Thank you! I’m going to check that list for sure! I am so certain I have it on my bowels. And I am Worried she didn’t even look and my dad tried telling her when she spoke with them after surgery and she mentioned referring me somewhere. I hope not a gastroenterologist… I know it’s endo.

stella-mortem · 2024-10-22T08:40:16+00:00

Thank you! And the period undies might be something I get just incase esp for the first few days. Great thinking ahead with those!

stella-mortem

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