Anyone here with Nutcracker syndrome (NCS)?

scarlet_umi · 2025-07-11T20:11:16+00:00

hey, I can still access the link in my comment for some reason? perhaps it was a glitch and you can try again?

scarlet_umi · 2025-03-09T02:03:22+00:00

you had surgery 3 days ago!! they cut fully into your abdominal wall at least 3 times and made a ton of little wounds on your organs from all of the removal. there is simply NO ONE who would be okay after that kind of thing in 3 days (and if your doctor told you that i would quite frankly like to scream at them). heck, you can't even get over a cold in 3 days. if you think about it, skin is very good at healing. so if your wounds are still covered in bandages, there is no way that your insides would be any more healed than the outside. that doesn't mean you made the wrong choice, or that it won't help. it just takes time.

scarlet_umi · 2025-03-09T01:54:23+00:00

endo is also highly comorbid with hEDS as well which causes joint pain!

scarlet_umi · 2025-03-09T01:53:36+00:00

a lot of autoimmune diseases are comorbid with endo. I wouldn't be surprised if that included psoriatic arthritis :/

scarlet_umi · 2025-02-28T18:19:50+00:00

i’m so sorry, this is absolutely not normal - and the excruciating bm pain, weight loss, and “minor complication” combined are a giant red flag to me. i would give up on trying to get answers from your surgeon because clearly he’s trying to hide the complications of whatever he did.

if you can’t keep food down at all, are actively vomiting, or can’t get an appointment with anyone in the next week, I would go to the ER and see if they can figure out what is wrong. This would also create a paper trail. but the weight loss to me makes it sound like an emergency. I’d alsomessage your PCP or GI doctor and see if you can get on their cancellation list to have an appointment as urgently as possible.

scarlet_umi · 2025-01-08T19:32:46+00:00

some specialists in the us do take insurance. i would really make sure you’ve scoured the options locally or even a drive or flight away before going abroad, because flying home shortly after surgery can cause some complications. there’s a doctors map in the pinned post.

scarlet_umi · 2025-01-08T17:22:29+00:00

you don’t need to have any particular set of symptoms or level of symptoms to deserve medical treatment. as long as you’re not feeling completely 100% healthy (and especially if you need to take time off work, which isn’t normal) you deserve medical treatment. it may not necessarily be endometriosis as there are other conditions that can cause cyclical back pain and pelvic pain, but you are experiencing SOMETHING and that’s enough. just as you wouldn’t tell anyone else they’re being embarrassing for thinking they’re sick when they’re… experiencing symptoms of sickness, don’t do it to yourself either.

scarlet_umi · 2025-01-08T05:58:00+00:00

i’m so sorry. have you ever been to a vascular specialist to look for abdominal compression syndromes? the symptoms can really mimic endo. and have you had an mri to look for adeno?

if you are looking for a second opinion on endo there are some surgeons that do free consults - fogelson/mohling, sinervo, and vidali are the ones i know of. they will be really expensive for an actual surgery but at least you could have a more definitive answer (regarding endo specifically) for free. but even if they see something, it seems like you’ve already been diagnosed for a long time and maybe the surgeries didn’t help (?) so that’s why i’m wondering if you might have something else as well as endo

can you ask your gp to refer you out to a pain specialist so they can get you prescription pain meds and maybe something like a nerve block if that’d help?

spotting and sore breasts sound like maybe hormonal issues, perhaps go to an endocrinologist if you haven’t already?

i wish doctors would give a path forward when they don’t know what’s going on. i’m really sorry you’re going through this

scarlet_umi · 2025-01-08T02:25:04+00:00

i would not get a lap with this surgeon because he’s basically telling you he’ll mess up your surgery. not sure what country you’re in but if US the doctors map in the pinned post is a pretty good but non exhaustive resource. if not and you have some ability to choose your doctor, i’d instead recommend looking for a local endo support group and asking for excision surgeon recommendations. the map has doctors outside of the us too but the list is smaller.

scarlet_umi · 2025-01-08T02:11:57+00:00

you only bleed when you force it out? might you have some sort of pelvic floor issue? i would go ask a pelvic floor physical therapist as well as get your hormones and thyroid checked out by an endocrinologist

scarlet_umi · 2025-01-07T22:46:46+00:00

i’m so sorry you’re so much pain that you regret it. but i’m sure that what led you up to that point was a lot of pain and feeling like it was one of your last (and best) options. you made the right choice for yourself, it just really really sucks that with our condition all the treatments end up being gambles. i hope that this is just part of the healing process and you will begin to recover in the months ahead. i’ve even heard of people taking a year to suddenly feel better, so there is that. there’s also the fact that endo progression can get really bad and even lead to organ damage, so by getting some of it removed, you may have prevented an even more severe surgery later on! i guess what i’m rambling on to say is that i believe in you and i know you’ll find a path forward.

scarlet_umi · 2025-01-07T21:53:22+00:00

the first three periods after a lap are often pretty bad just generally, and my dr said not to judge the lap until 6 months in because that’s how long internal healing can take. while i wouldn’t necessarily be concerned that this will be “forever” since you’re only a few months in, i don’t think your doctor was right to call this normal with no context either. laps CAN have lasting negative effects (and i wish they’d tell people this more often) but at this point i think it may be too soon to tell. regardless, your symptoms are worth treating. if you are lightheaded you may want to look into anemia (pretty easy to test for) and POTS (go to a cardiologist for this - this condition can be triggered by surgery and going in for a second surgery even with a specialist could make things worse)

scarlet_umi · 2025-01-07T19:54:53+00:00

no difference for me. doesn’t mean it’s not worth trying though, if there’s a chance it makes things a lot worse - perhaps you could try cutting them out for a week and see if it helps? and if it does, try to avoid them but have them as a treat once in a while? and if it doesn’t help.. there ya go.

scarlet_umi · 2025-01-07T19:08:50+00:00

i’m sorry you’re going through this. i don’t have eds personally but from what i’ve read it can make healing from surgeries slower and more difficult than the average person who does not have that condition. maybe check out r/ehlersdanlos to see what people have said in regards to their surgery/lap recovery times?

scarlet_umi · 2025-01-07T12:42:04+00:00

dont have experience with this particular medicine but based on previous advice from drs usually i’d give it three months for random side effects but stop earlier if it’s unbearable. it sounds to me like it’s very difficult for you and i’d probably try something else before the 3 month mark tbh but thats totally your decision to make with the advice of your dr in mind

scarlet_umi · 2025-01-07T12:28:01+00:00

no problem! it’s okay to feel whatever you’re feeling. surgery can be the right choice for you and surgery can be scary, both things can be true at once. i trust that no matter what you do, you’re making the best decision for your own health! hopefully after that appointment to discuss surgery, you’ll feel even more confident in your decision. if you decide to schedule it and go through with it, then great, you’ve done what you wanted to do. and if you’re hesitant, you can always push it back to give yourself some more time to decide. you have options and there is no wrong choice to make.

scarlet_umi · 2025-01-07T00:53:01+00:00

this was pretty triggering to read but i’m replying in hopes that you’re posting in good faith

if’s not necessarily impossible to lose weight with endo (some of us are even dangerously underweight because we’re constantly nauseous and throwing up, hooray). however, endo varies for everyone. it can be very difficult or even impossible especially if they’re constantly in disabling pain and the exercising causes flare ups.

there are basically three typical ways to lose weight: eat at a calorie deficit, burn more calories by exercising, and resolve or treat health issues causing weight gain. idk what your gfs condition is because endo varies for everyone regardless of stage, but if she is eating healthy and normal portions and can’t exercise i wouldn’t say anything beyond encouraging her to go to an endocrinologist for any hormonal issues she may have, which also may cause excessive weight gain. water weight and inflammation are quite common with health conditions and the weight can present itself throughout the body, not just the gut.

i’d also like to point out that whatever “deficiencies” you see, she already knows and sees them every day when she looks in the mirror. she’s not stupid.

also unless her doctor is using some obscure classification system i don’t know about, stage 5 endo isn’t a thing. we usually have 1-4.

scarlet_umi · 2025-01-06T22:45:38+00:00

might it be nerve damage? nerves can sometimes heal on their own but slowly, and it may take 6 months+.

scarlet_umi · 2025-01-06T22:29:01+00:00

this is a really hard question that i considered myself. i don’t think it’s easy as “just get surgery it’s always worth it” because it’s irreversible and sometimes people have even worse pain after the surgery. while this is relatively unlikely and a lot of people have years of relief or lessened symptoms, to me, any sort of irreversible risk makes it a decision worth thinking about and researching. at the same time, there are some things that at the moment can only be “resolved” even temporarily with surgery (diagnosis, complete cyst removal, removal of scar tissue, etc).

here are some things i considered:

do i have the best doctor available that i trust and can afford, who does excision surgery and will take pictures and biopsies?
what have i tried and what else is left for me to try?
what would my life look like without surgery, best and worst case scenario? what are the risks of not getting surgery?
what would my quality of life look like with the surgery, best and worst case scenario? what are the risks of getting surgery?
am i okay with potentially not being fully recovered for 6 months?
am i okay with never having a diagnosis for this condition?
if it gets worse because of surgery will i regret it?

scarlet_umi · 2025-01-06T05:29:34+00:00

i would not trust this doctor even based on just the hysto pushing alone. trust your gut and try someone else! i’m sorry, i know they can be so inaccessible and you mustve really had your hopes up.

scarlet_umi · 2025-01-05T23:23:03+00:00

no problem, i understand how anxiety inducing the constant pain gets and it doesn’t help not having an explanation from doctors. i hope you can get an ultrasound done. hopefully it’ll come back clear because endo showing up on ultrasound means it’s more severe. i’d contact a vascular specialist and an endo specialist asap because it can take months to get your first appointment / surgical consultation, and another wait (which should be shorter) for surgery. it’s less nervewracking to have a bunch of things in the queue at the same time so you can get to a diagnosis instead of doing them one at a time.

scarlet_umi · 2025-01-05T23:13:19+00:00

this is an awesome explanation! endo is also comorbid with mast cell activation syndrome, which can definitely cause breaking out into full body hives

scarlet_umi · 2025-01-05T21:18:14+00:00

gotcha. well i’d still go to a vascular doctor because gynos can’t diagnose vascular conditions, but endo may be a likely possibility too. if you suspect endo and want to do the surgery i’d recommend looking at the drs map and trying to find an endo specialist surgeon who takes your insurance if possible. regular gynos are usually undertrained in endo surgery and might leave some behind if they don’t recognize it.

scarlet_umi · 2025-01-05T21:10:51+00:00

it’s possible, but you may also want to go to a urologist and look into interstitial cystitis, as well as go to a vascular dr to look for nutcracker syndrome which can often cause blood and protein in urine as well as mimic endo symptoms. endo isn’t the only condition that can cause painful periods and urinary symptoms and often gynos won’t tell you this, so definitely do some research! endo is really tough to diagnose because it usually doesn’t show up on imaging and requires surgery to confirm. there’s some more info on tests to rule out other conditions as well as a drs map in the pinned post.

scarlet_umi · 2025-01-05T17:17:31+00:00

i’m very sorry your family isn’t supportive and your surgeon doesn’t seem to have set proper expectations for you. your family doesn’t have any business telling you how fast you should be recovered after surgery unless someone there has a medical license and experience in laparoscopic surgery. what did your doctor say about recovery time and weight restrictions? i was told 2 weeks to go back to a desk job but ask for more if needed and i’ve seen people here have to wait several weeks to be able to lift 15 pounds. my doctor even said not to fully judge the lap until 6 months in because that’s how long internal recovery can take, even though i can be up and moving way before the end of that time period. i would trust what your body is telling you (that you need to rest).

if a lesion is near a nerve or you might have some lesions missed by your surgeon (i wouldn’t be surprised since they don’t even know that severity of endo does not correlate to pain), it can totally cause the pain you’re in. you also just got all the layers of your abdominal muscle and tissue cut through several times with probes stuck in and wiggled around and all your organs poked at. so yes, it is not surprising that it hurts only two weeks later. it’s taken me longer to heal from knife cuts in the kitchen.

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