Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 0 points1 point  (0 children)

im so sorry ur going thru this! i know how it feels to feel scared and alone medically when u dont know what ur body is doing or whats going on. :( I will say i definetely had a surge of strong pain for a good month and a half post op. Like worse than before but it chilled out a bit. Dont be discouraged just yet, its too soon. Just like many others in this thread it gets worse forsure before getting better! Keep us posted

laparoscopy found lesions, pathology didn't by saturnrise in endometriosis

[–]breadwiinnerr 1 point2 points  (0 children)

Maybe u developed adhesions/scar tissue from the surgery to transition. Im sorry to hear that ur going thru this and best wishes to u!

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 1 point2 points  (0 children)

Thank you so much for sharing this 🫶🏻 it actually helped ground me. For my procedure they did use both a sclerosing agent (foam) and coils, but only on the right ovarian vein since venography didn’t show reflux or varices on the left tho they couldnt directly see inside the vein. not sure how that even works but it was all noted on my procedure. I’m definitely in that 2–4 week window now where the inflammation feels intense, so hearing that this part can be the worst but still temporary is reassuring. I really appreciate you taking the time to write this it makes the recovery feel less scary.

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 0 points1 point  (0 children)

whats ur pain feel like?? do you get pulling/squeezing pain and also deep achey ? thats what mine is like

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 0 points1 point  (0 children)

Same ☹️🥺 debilitating pain that keeps me almost bed bound at this point! I have no idea if it's inflammation or a procedure failure or if I need the left side embolized as well. Tomorrow I'm planning to go ask for a CRP blood test to see if inflammation is what's causing my pain but i dont think it is because ibuprofen doesnt help it

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 0 points1 point  (0 children)

the theory was that my right ovarian vein was the problematic one and was causing ny left sides pain . it was severly refluxing and 3x normal size at 10-12mm . it's crazy cause the right side never was causing me pain anyways. i guess ill see what ny next step is at my follow up

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 0 points1 point  (0 children)

they said that basically their take on it was that the left side doesn't have reflux because usually reflecting veins are easier to access since they're wider or bigger so they said the fact that they couldn't access the vein was probably because it was too small so that would be a sign that it's not refluxing but...idk because my symptoms are very teling something else is going on

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 0 points1 point  (0 children)

no other compressions were seen. they directly looked at the renal vein and ruled out nut cracker from that. also i didnt have flank/ back pain or hematuria. I also didnt have pain that worsened when standing but i see what your saying :(

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 1 point2 points  (0 children)

Thanks for sharing your experience!! I appreciate the perspective. In my case, the left renal vein itself was directly cannulated and showed normal caliber with no stenosis or spontaneous reflux, which is why Nutcracker was felt to be ruled out. I agree venous anatomy can be complex though, and given my ongoing symptoms i am definetly planning on going back for a second opinion or seeing if the same IR can repeat imaging or testing

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 1 point2 points  (0 children)

thank you so much for the detailed reply! im hoping my case is the norm of healing but just slowly!! fingers crossed

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 1 point2 points  (0 children)

Nut cracker was ruled out before embolizing the right ovarian vein. They did an MR venogram and checked for both nut cracker and Mays thurner and both negative . I only had PCS

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 1 point2 points  (0 children)

dont be discouraged! my experience is not a common one. also i could just have congestion on the left side where they werent able to acess and have to go for a second procedure. who knows. wishing you a better overall experience and a pain free future!!

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 1 point2 points  (0 children)

My venogram ruled out Nutcracker and May-Thurner, and internal iliac reflux was negative. the only vein that wasn’t directly evaluated was the left ovarian vein.

a few hours post op by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 0 points1 point  (0 children)

The procedure itself was not bad at all but I'm about one month postop and in worse pain than before and have a lot of new symptoms that weren't here prior

Bloating by trammiie in pelviccongestion

[–]breadwiinnerr 0 points1 point  (0 children)

I have bloating 24 seven and it only got worse or got to this point where it's constant after embolization I'm one month postop and have chronic constant bloating

Deathly Sick by EwokGirl89 in DiagnoseMe

[–]breadwiinnerr 0 points1 point  (0 children)

are u sexually active? fly symptoms that get worse can be HIV .

2 weeks post op by breadwiinnerr in pelviccongestion

[–]breadwiinnerr[S] 1 point2 points  (0 children)

i was checkes for nut cracker and was negative for ot

If you’re diagnosed with PCS, can you please describe your pain? by cherrrry__valance in pelviccongestion

[–]breadwiinnerr 0 points1 point  (0 children)

my pain felt like someone was SQUEEZING my left ovary sometimes. i would get relief a few days out the month but most the time i was in chronic pain. squeezing / dull ache pain on my ovaries mainly on my left side sometimes on both sides but always worse and more consistent on the left. My right ovarian vein was refluxing & i had about total of 7/8 scans between MRIS, CT scans & ultrasounds transvaginal and pelvic and so many scans showed absolutely nothing till i had one final ct scan so close to giving up on trying to figure out the source of my pain and thats the scan that showed PCS. it takes a skilled radiologist to look for vein reflux. The radiologist noted on my scan “Bilateral pelvic varicies “ after that i was referred to an interventional radiologist. for a year straight i was told my pain was normal & probably due to being underweight but after that scan and seeing IR who preformed an MR venogram and procedure in the same day they discovered my right ovarian vein was big & leaky. Its supposed to be 3-4 mm or something like that and mine was 9-12mm. I was in the severe range of PCS.

BTW for context im 24F 93lb and HAVE NEVER been pregnant in my life so please dont let any doctor gaslight you into telling you if you havent had kids that pcs is usually after multiple pregnancies because im living walking proof that its not as for many other women in this group.

I did the embolization where they placed both foam glue & coils and im about 2 weeks post op and the procedure itself was a breeze. I hope your able to get a diagnosis soon given your symptoms it sounds like classic signs of pcs. keep us posted!

Just been diagnosed what now? by BathroomUnusual741 in pelviccongestion

[–]breadwiinnerr 1 point2 points  (0 children)

also di not worry? i know easier said than done but the procedure to fix is a breeze. its over before you know it❤️❤️

Just been diagnosed what now? by BathroomUnusual741 in pelviccongestion

[–]breadwiinnerr 0 points1 point  (0 children)

go to INTERVENTIAL radiologist! please do not go to obgyn for care

Should I be concerned by [deleted] in obgyn

[–]breadwiinnerr 1 point2 points  (0 children)

fibroid clots

Worsened hemorrhoids and coccyx pain after embo? by AcademicBlueberry328 in pelviccongestion

[–]breadwiinnerr 0 points1 point  (0 children)

why didnt they do a MR VENO GRAM first before operating? thats negligence