r/pelviccongestion

Scheduled to have a venogram next week. What do you wish you’d asked your IR beforehand?

so back in december 2025 i had a couple clots in my left leg resulting from may thurner syndrome and i had a stent placed in march. a few weeks ago my pelvis started aching right where the stent is and my mom noticed a bit of swelling in my leg so i contacted my hematologist and she ordered a ct scan. i got the results back and it says “**IMPRESSION**:

1. Moderate circumferential thrombus along the wall of the distal external iliac vein component of the stent.
2. Mild circumferential thrombus along the wall of the common iliac vein portion of the stent.”
   which i THINK means there is clotting on the inside of the stent. i also contacted the surgeon who placed my stent just to let him know what was going on. he called me today and said he took a look at my ct images and he does not believe i have a clot, it’s just “remodeling” (his words). i don’t exactly know what that means. i’m a little confused that the radiologist believes there is a clot but the surgeon doesn’t. thankfully i have an appointment with my hematologist in person tomorrow but has anyone else experienced something like this? would it not be super obvious i have a clot or is it harder to see if it’s inside the stent? idk!

I’ve been trying to research as much as possible since being diagnosed. I’ve noticed a lot of others have POTS, nutcracker syndrome, pelvic congestion, and/or EDS. I don’t believe I have those or anything else. does anyone else ONLY have MTS?

would an IR be able to see nutcracker syndrome or pelvic congestion on a CT with contrast of the pelvic/abdomen? I would assume they took a look at other veins too in the area?

what about mild MTS? mine is considered mild per my IR but I did have a pretty extensive DVT. anyone have mild swelling and not many symptoms other than a DVT? how’s the stent going? i am getting mine next week and have alot of anxiety towards this decision. i also have a fear that I get the stent and then a ton of issues will start unfolding when my health history has been pretty “boring”. (anxiety)

and yes, I did search MTS in this group and have read TONS of stories. I haven’t found many that relate to me in the sense of possibly ONLY having MTS with mild symptoms but did have a history of a DVT.

thank you.

Normally I have lower back pain when I stand, that's my main symptom. It's severe so I don't walk more than 2 min around the house. I'm in the middle of may thurner evaluation.

Today I got new stabbing pain 9/10 in my groin. I stood up and I felt this whoosh of warmth down my left leg, so warm I reached down to feel for blood. Obviously there wasn't but the skin was warm.

I was nervous this was a blood clot or something so I went to the ER, they said it was probably a hernia.

I go to the IR doctor tomorrow but I feel like something happened around venous pooling.

Anyone have something similar?

I still have the pain but it's less with meds and strictly laying down (no sitting specifically).

Hi all,

I have a 2.5 hour procedure around 7.20 ish. Went in via IVUS and MTS not found - was only at 40% compression but did find Nutcracker at 60%.

Went into deep pelvic floor varicose veins and embolized those and also “direct stick” to do visible vulvar Varicosities.

I’m going to be honest. I don’t feel great. It’s coming up on a month and I still have lots of heaviness, some period like cramping, back of the leg pain, and now lower back pain. Apparently I did have a lot of pelvic floor varicose veins.

Anyone else just have embolizations and care to share your recovery story? I have a follow up with MIPS in September and a new consult with UCSD in September too.

I’m sad and worried

I live in Oregon and traveled to Denver, CO to be treated by Doctor Spencer at MIPS this week. I’m on day 2 of recovery after having a stent placed in my left Iliac Vein on Friday. She found an 83% compression through IVUS- and I’m feeling pretty good! This is my experience only and not intended to be used as medical advice.

2 days before the surgery I started taking Journavx- a newish none opioid pain medicine. After the surgery I took ibuprofen and Tylenol every 6 hours with oxycodone when needed. I stopped taking the oxy today as the pain has gone- (I’m feeling more bloated/ IBS’y than anything) but I will continue to take the Tylenol and ibuprofen for a few more days just in case.

I had moderate back pain yesterday (more so on the right side which seemed odd) but nothing terrible. The meds did their job and a heat pack worked wonders. I had more energy than usual and may have overdone it a bit as I was very tired today.

I’ve suffered from POTS with heart palpitations, heavy legs, breathlessness and chronic fatigue for the past 4 years, which is what led me to pursue a diagnosis of MTS.

I stopped taking my beta blocker yesterday and haven’t had a single heart palpitation since the procedure.
I have felt some heaviness in my legs and weakness in my arms when getting up and raising my arms above my head.

I was given a Gore Fortegra stent as I have a mild nickel allergy.

Dr Spencer was absolutely wonderful. She’s truly a unicorn. She explained everything to me before the procedure and showed me the stents- she let me play with them a little bit too, which was much appreciated! Despite being extremely busy and short staffed she spent time with me afterwards explaining her findings, she even helped me to put on my shoes! Her nurses were also extremely kind and supportive and I felt very well taken care of. I had to pay out of pocket because I’m with Kaiser in Oregon and they wouldn’t cover it. This meant taking out a $20k loan on my home, but if this helps with my quality of life it will all be worth it.

After a 4 year long journey of trying to get a doctor to listen to me/ take me seriously, this already feels like a huge win. I know that recovery is not linear and I’ll keep posting about my progress here- feel free to ask me anything.

I was diagnosed a couple of years ago and not much has happened since then unfortunately, and this week I've had horrendous bladder irritation and I'm just fed up.

At first I thought it might be a UTI but I didn't get the painful stinging when I urinated and it seemed to go away for a bit. But every day for the past week the bladder irritation comes on like clockwork around 4/5PM. I go for a wee and I don't feel like my bladder is fully empty and then there's this feeling of not feeling like my bladder is empty and like a dull, heavy ache in my bladder and urethra. I started my period four days ago, but it's about a week early and I have an IUD so it can be a little tricky to track.

Has anyone else experienced this and if so do you have any suggestions? I'm currently just taking paracetamol and ibuprofen for the pain, but it's more the lasting discomfort every evening that's bothering me than it being acutely painful.

We’ve been back and forth with my insurance (Anthem blue cross blue shield) since February trying to get my embolization approved. They denied a peer to peer from the start and denied 2 levels of appeals by my doctor. The final option is requesting an external review which I did last month. Advanced Medical Reviews is doing the external review, has anyone had any luck getting it approved with an external review?

I was first diagnosed with May thurner and pelvic congestion and as it’s now lead to CVI I am feeling really low. I have a consultation next Friday regarding my next steps for this.

I have veiny legs, but nothing too noticeable, however the pain is unbearable, I’m assuming because they are not surface level it is harder to treat?

I am treating May thurner first but in terms of the CVI, what do people advise?

Excluse my ignorance, what is ablation meant to do if if the blood only reroutes and potentially causes more issues?

Fingers crossed targeting May Thurner will relieve some issues, but what about the already damaged veins in my legs. I used to be super fit, now I can barely walk up the stairs.

Any comments would be appreciated.

Thank you

Hello.

I am 7 days post stent placement for May Thurners. I was >95% compressed.

In May, I have a CT scan and my vascular dr misinterpreting the results and said my May Thurners compression was slight. I have bilateral leg swelling at the time and she said I have lymphedema that appeared after my second pregnancy. Eventually, after lymphatic therapies, my left improved and right leg worsened. I went to the ER and a another vascular physician consulted me. Reviewed my CT scan and immediately scheduled me for a venogram. The ER dr tip toed around it but said don’t worry we will ask our IR dr that is very familiar with iliac stents and will get you taken care of. I called the IR dr and he very kindly said the other dr was wrong and this was severe and I needed this and he would do his best to give me a good outcome. He told me to message my vascular dr and let her know I was going into a venogram and ask for anticoagulants and review the procedure. She never answered (obviously because she was wrong). So he took over and ordered my meds and quickly briefed me after the procedure on what to expect. I was coming out of sedation and he said I was >95% compressed … no blood in the vein and I had significant collaterals connecting in my lower back and pelvis , shunting blood between the left and right iliac vein…. Basically only my right iliac vein was delivering the body from both of my legs to my heart. He thinks probably for my whole life. I’m 7 days post stent. My heart is experiencing so many palpitations. I went to ER and told me it would take time to feel normal. They did xray and ecg and my heart looks ok. Also immediately after the procedure, swelling went down. Yesterday, I went for long walks and played with my toddlers more since I felt better and my leg is swelling a little worse today. I am very nervous about that

Can any one please share symptoms post May thurners stent placement ? Timeline of when you felt normal.
I am sure my case is weird since they did not embolize the collaterals and my blood can flow in two directions and they said my body will take time to relearn flow and those extra veins would shrink over time

I'm hoping my hip impingement problems somehow resolve themselves after we figure this out but I go for an ultrasound for pelvic vascular compression syndrome next week to find out whats going on.

It would explain alot of my pain.

(But I also have a labral tear, that for 85% of the time, doesnt bother me)

Ich hatte vor 13 Tagen eine Embolisation der li Eierstockvene mit Coils.Seitdem gehts mir seit Tag 5 post OP noch viel schlechter als vorher.Habe unerträgliche Flankenachmerzen und Stechen in der Seite links u und im linkem Oberbauch und Rücken wo die Niere sitzt.Jetzt hatte ich auch etwas nicht sichtbares Blut im Urin und minimal Leukozyten.Habe total Angst das ich von der OP eine Nierenentzuendung bekommen habe.Kennt sich jemand aus?Die Niere wurde nochmal geschallt und war nicht gestaut aber ich habe unerträgliche Schmerzen

I’m a month out from my May Thurmer stent op and while the pain has resolved, I still have fatigue everyday. I have an autoimmune disease that has been flaring since the stent, and perhaps that is where some of the fatigue is coming from. Would love to hear other people’s recovery stories!

I have issues with nerve pain in my groin, thighs and even sometimes my lower leg. It feels like these urgent zaps/pain jolts. They happen every few minutes whether I'm moving or at rest. I have been diagnosed with pelvic congestion syndrome, but my symptoms also started around the time of a hernia and surgery. So I'm working with doctors to figure out what is the primary cause of these nerve zaps I feel. I don't really get the classic ache people describe with pelvic congestion. Did anyone's pelvic congestion symptoms present like constant nerve zaps? Just curious.

I’m trying to find out if pain in my lower left pelvis is residual endo or from congestion/ compression as seen on MRV (no varicose veins but enlarged veins ) .

Do any of you with pcs / Mts have burning or cramping pain around your period low left abdomen also at night when you lie down ? It can also be that surgery needs more time just good to know

Hi all, just got back from my appointment with vascular surgeon and I do have an Iliac compression. They’re going to embolize one vein and put a stent in my iliac. I’m wonder if anyone can share when they went back to work after this? Dr said a few days of pain will be expected but was interested in some first hand experiences.

I saw a vascular Doc today for my leg sweeling in my right leg. He ran all kinds of ultrasounds and saw the blood flow in the right leg was slower than the right. After not beeing able to see anything on the ultrasounds, he recommended a venousgram. I have had chornic pelic pain for 3 years, getting worse. Had a hysterectomy, I am still in pain. Coloscopies, all clear. Now my l;eg is swelling and low stomach pain. Does this sound like what some of you experienced? I am not a fan opf being knocked out 100%, I donmt know why they cant do this with twighjt sleep.

I have a great interventional radiologist who recently diagnosed me with May Thurner Syndrome. He has been pretty casual about it and has told me not to worry or make any lifestyle changes, but I have so many questions about it. For context, I have had ultrasound and MRV but am not scheduled for a venogram yet. I’d appreciate any info you have from personal experiences.

-What are some good informational resources you’ve found for May Thurner’s? I have found a lot of conflicting info using Google so I’m wondering if there’s a reputable online recourse, podcast, etc?
-If you’ve been diagnosed but have never had DVT, do you take anticoagulants?
-Has the diagnosis impacted your travel frequency or flying routine? My doctor said not to worry and just wear compression socks but I want to make sure I’m doing everything I can to be safe for long haul flights.
-How long was your venogram recovery with no stenting? Or with stenting? How long before you went back to work?
-Do you take any supplements or made any lifestyle changes that have helped? Or things that you avoid?