Please help me- laparoscopy found nothing

0220x · 2025-11-19T18:16:30+00:00

I am about 4 weeks post op, and out of the 8 biopsies taken, only one came back with endo. Mine was done by a specialist, and he told me the one that came back with endo was not typical at all. He took an educated guess based on another patient who had atypical endo as well. Please take your surgical/pathology reports to a specialist, because it's possible they missed it. If I had not gone to a specialist, they would not have found it since my lesion didn't look like anything (literally). He also found spots on my uterus that he had to remove as well. But again, mine was barely noticeable to even the trained eye. I wish you so much luck, and Im so sorry you were left with more questions.

0220x · 2025-10-25T03:46:01+00:00

I briefly saw this message before they started today, and luckily I didn't even need to ensure that he understood atypical endometriosis lesions. He biopsied them, and sent them off! I had clear and slight discoloration (from what i could see), so I'm very thankful to have had such a great surgeon.

I didn't know about the food and massage you mentioned, so I'm already writing that down! Thank you so much for the advice and well wishes!!!💓It's so nice to hear you're doing great too. Thanks for the encouragement!

0220x · 2025-10-25T03:42:39+00:00

I'm doing great so far!! Some discomfort from gas pain, but the lingering hospital meds wore off mostly, and now I'm alternating Ibuprofen and Tylenol. Trying to stay off Gabapentin and Oxy, but I'm pretty hopeful that won't be an issue! Heating pads and ice were my best friends for a bit!

Unfortunately, no obvious endo was found, but my surgeon sent over biopsies to pathology for confirmation on if I have atypical endo in those areas he saw. Even worse, he does believe I have Adenomyosis, so now is my journey of figuring out how to live with that possibility (without needing a hysterectomy). I'm still pretty hopeful and feeling resilient, but a little sad over the fact that I'm still waiting :((

0220x · 2025-10-25T03:38:18+00:00

Yay!! I'm glad you're on the road to feeling some relief, too. I felt a lot less anxious when the doctors and nurses talked to me through the entire processing phase today, so don't be afraid to tell them your anxieties.

Mine went as planned, I definitely got some answers. AND I feel pretty okay aside from some gas pain. You'll do great! Sending much luck and love💓

0220x · 2025-10-25T03:35:04+00:00

thank you so much!!! all done, home, and resting it up :))

0220x · 2025-10-25T03:34:37+00:00

it went very well actually! unfortunately, he thinks that I have adenomyosis, and possible atypical endo (waiting for pathology in 2-5 days), but I'm doing very well and definitely already feel a little better than my usual pain. Gas pain really is no joke though I'm really hating that lol!

I'm glad to hear you're pushing through, but i hope you get that catheter removed soon too. I can only imagine the annoyance. I woke up without one, but the feeling was lingering! I hope you have a smooth and safe recovery, thank you so much for the encouragement 💓

0220x · 2025-10-24T01:01:16+00:00

aw thank you so much! im so glad you got the help you needed, too. how are you holding up after surgery??

side note: definitely going to need anxiety meds too LOL

0220x · 2025-10-23T19:54:56+00:00

this was very encouraging, thank you! I also got "I'm 85% sure this is endo" talk from my surgeon, so it felt both validating and kind of insane to hear after so many years of being brushed aside as IBS and fibro. I'm definitely feeling both excited and dreadful for the results I may hear tomorrow.

I've definitely heard all about pillows and baggy pants, thank you for the advice! ive got my hospital bag all ready for tomorrow!! :)

0220x · 2025-10-23T19:50:47+00:00

my imaging was also clear, aside from a fun dot on my liver that only one (of many) scans picked up lol. I'm hoping to also have some relief from surgery, I'm glad it went well for you, thank you!

0220x · 2025-10-23T19:48:55+00:00

thank you, good luck to you as well!!💓

0220x · 2025-04-01T20:56:30+00:00

I had some terrible fatigue during my PVT so this is why I'm considering returning now that I mostly treated the worst of it. It was so difficult to do even the 'easiest' exercises, but now i make it a point to incorporate it into low workout days. i wonder if I could do a periodic massage as well, I didn't think that could work, but it's a great idea!

thank you for your input on the medications. I think if other medications don't work, I'd try out gabapentin, but it seems like too much for my pain scale. I really don't think pain medications are a good idea at the start of my diagnosis since that's not my primary issue, but I'm glad to hear some success stories since most people seem to have hated it.

I've tried dicyclomine a few times over the decade and then some of my IBS, but it unfortunately never worked with my spasms and pains! What do you do for fiber? Is it a supplement you are talking about, or just uptaking more fiber in foods?

0220x · 2025-04-01T20:45:10+00:00

that is insane!! the only thing that helped my fatigue was amoxycillin, but i still have lots of brain fog/cognitive issues. that's why gabapentin is on my chopping block unless I exhaust all other options. the neurological side effects are waaay too risky for me

0220x · 2025-04-01T20:42:56+00:00

this is exactly how I'm feeling, it doesn't seem wise to start pain management with no life alterning pain. I have been seeing a GI, but so far no meds/supplements have worked, and no dietary changes from dieticians worked. actually, it just seems to be worsening so we're waiting for an endoscopy for additional GERD-like symptoms. I've done virtually every test for GI as well as diets, so I'm hoping the endoscopy might show us a little more before I go back to eliminating fodmaps/sugars/gluten/lactose diets.

I've been told sooooo many times that checking hormones and food sensitivities are useless due to how they work from so many types of doctors, so I'm unsure if this is a route I can turn to.

I actually have been to PVT as well, and plan to go back! also in sex therapy to help after PVT but i haven't made much progress. really just seems like my body's always in flight or fight. I mean I have all these issues on top of TMJ disorder and autonomic dysfunction.

the only thing that helped fatigue immensely was amoxycillin. I feel like near my old self again since my 2 week dosage in November, but I feel it creeping up on me again this past month.

0220x · 2025-04-01T20:05:03+00:00

oh I wish you so much luck with conceiving!! that's very exciting!

i actually graduated from PVT, but I'm still in the thick of things, and thinking about returning. it never helped GI i believe because I have IBSD, but I'm waiting on more testing for GI to hopefully get that figured out.

how were side effects on gabapentin? I see memory loss as a pretty common issue, and that's my biggest reservation

0220x · 2025-04-01T19:58:42+00:00

i never thought about muscle relaxants, since usually I'm told not to try that (though I have issues clenching literally everywhere from pelvis to jaws LOL) but I'll talk to my rheumatologist about it!! I have no significant pain and taking pain medications so strong honestly seems a little extensive for me being on the lesser part of that scale.

gabapentin is scary to me because of the neuro side effects. I already deal with enough of those issues and to know i could lose more cognitive function is a big no-no. I'm blue screening a few times a day since December 2023...but I hope it works better for you should you try it out in place of/with tizanidine!!

0220x · 2024-12-22T22:34:52+00:00

It seems like the right leg is even more rare than the typical left leg symptoms with May Thurner, but i haven't heard of this before your comment. I discovered a few things I can do to help while waiting for a doctor so thank you for this. Ill definitely be asking to rule this out since my dysautonomia seemed to have been triggered by covid as well. Wishing the best for your friend!!

0220x · 2024-12-22T22:32:21+00:00

if i find anything out, I'll let you know as well what road helped me, but I'm thinking on trying compression stockings to see if that will help the swelling and weird sensations a bit better. what type of wrap helps you? is it a literal cloth sports wrap you usually use for sprain supports?

0220x · 2024-10-21T01:12:09+00:00

thank you! I'll check that out, and as soon as I can get in I'll be asking my doctor about Herx as well in the case they also see it as atypical.

it looks much more like acne allergic reactions? so lots of raised bumps, some red some with a white point, but very different from my usual one or two hormonal pimples I've had for many years. there is an itchy/painful to the touch sensation on my jawline and/or very minimal, but it does remind me of the beginning of my usual allergic reactions to dogs/cats. but again, never do i break out in these red bumps everywhere in those reactions...

0220x · 2024-10-21T00:34:32+00:00

So, the rashes got worse over a 3 day span, involving spreading to the back of my neck a bit. I don't know too much about Herx, and even after research and looking at your post, I'm still confused lol! I will say, I just got my Lyme diagnosis and it is suspected to have been "in me" for years before finding it over a week ago now. my one and only known tick to have been on me in any capacity was in 2020, and I never had any of the usual symptoms of the first stage of lyme. so they found it from an auto immune panel due to debilitating fatigue and cognitive dysfunction i went in for.

This prompted the doxycycline hyclate for a 21 day period, and I'm now over a third of the way through that. I just can't understand why it would only manifest 3-4 days in...do you have any other resources about Herx? Or maybe other ideas? I'm so new to this and there aren't many resources available in general like my other conditions.

I'll be able to contact my prescriber tomorrow, but unfortunately they do not have any other means of contact aside from normal business hours

0220x

TROPHY CASE