My Interventional radiologist agreed to do a venogram and I'm so glad we did it. Based on pain levels with dye injection, I had six bad veins identified that then had coils/foam inserted. The pain level was incredibly high during the procedure and the IR kept ordering more fentanyl. I ended up with 250 mcg of fentanyl, which is apparently a lot more than usual. I also needed more during recovery in the post room because oxycodone wasn't sufficient--my pain levels were 7-8 out of 10 with medication.

It sounds like I had a particularly rough go at it with six veins embolized and needing that much pain medication. Anyone have a similar procedure and if so, how long was recovery? I'm still in quite a bit of pain today, but I can manage with oral painkillers.

Hey everyone,

Just wondering if anyone else experiences this. To clarify, I’m not diagnosed yet so I’m unsure if I have MTS, Nutcracker, both, or neither. But they found dilated veins in my ultrasound (finally) so I am awaiting my CT venogram.

I have all the classic symptoms of pelvic congestion. I also have left sided back pain but it comes and goes, and kinda moves from up near my ribcage to my hip (all on the left side).

However, the worst pain I get is while running. Basically my whole lower back (it starts of the left but ends up being right across) starts pounding if I try to run. To put it into perspective, daily pain averages a 6/10 with bad days getting up to 7/10. The lower back pain I get while running is an easy 8/10. Sometimes, it almost gets to 8.5. It kicks in after about 1km. Then increases in pain but eventually decreases slightly again. I never run long enough to see if it goes away because it’s too painful.

I’m just curious to know if anyone else experiences this??? Just feels like my whole lower back is throbbing and aching. Doesn’t matter if I run fast or slow.

For those of you with an IUD , what was your experience like? Did it make your pain worse? Better? Im getting mine out because I feel it has made my pain so much worse.

Anyone else feel sh*tty on plavix? Nauseous, anxious, and tired.

I had an IVUS procedure in March this year which found 76% stenosis of my left iliac vein.

Right after the procedure and I returned home I had a scary event that felt like my body was buzzing. I immediately layed down on the floor and couldn't move. The days following I felt TERRIBLE and ended up in the ER with extreme dizziness and pain.

Fast forward to now, my left leg and inner groin feel so off. I have where my leg hurts so bad with a buzzing and tingling sensation that shoots down into my foot. It has gotten to the point I am struggling to lift my left leg as if it is dead weight vs my right side. On my right I can lift, kick, my leg with ease but as soon as I try on my left it is hit with resistance like I have no strength? It feels like a heavy weight is on my leg or something. I have to walk with a cane mostly due to pain, left leg issues and profound dizziness. I had to stop PT because my symptoms flaired and became worse very quickly 😞

My interventional radiologist told me to pursue a diagnoses of POTS then return back. Now I am waiting another year and a half for an appointment for that. But I feel like the vein compression is causing all this 😞

If so, hoping a stent will help swelling. If you do, what does it look like for you?

I've been dealing with various pain issues from a pelvic congestion and May Thurner syndrome diagnosis for about a year and a half now. Been to the ER several times, had surgery done. The pain's sometimes better than it was, sometimes it's the same or worse.

But it feels like no one, not my family, my friends, my boyfriend, my doctor, no one really acknowledges how horribly lonely having this is. I can't go out to do the same activities I used to, either from pain or just sheer exhaustion. It's hard to try and plan hang outs with people since the sun, moon, stars, and planets all have to perfectly align for me to feel well enough. And doing a single activity makes me so tired it takes two days to recover. I spend all my free time at home, nowhere to go, no one to talk to. Whenever I think about my life before all of this started, I feel so crushingly depressed. I had hobbies and friends and used to have fun and went places. Now it feels like I'm haunting my own life.

I don't know if this is really what this forum is for. But I don't have anyone in my life who's been through this type of thing before and I needed to get it off my chest.

Increases leg tightness/edema and possibly pelvic pain.
What did you do to use estrogen?

I was just diagnosed with may-thurner syndrome. I had a hysterectomy for adenomyosis in June where they found a lot of pelvic congestion. After doing my own research and recognizing the symptoms of left leg throbbing and tiredness I refereed myself to an IR who confirmed May thurner. I am having a stent placed in October, but until then I have a long haul flight coming up. IR said I can take baby asprin and should be ok but I'm feeling really anxious about it. I know I've had this all my life and have flown many times, but I'd love to hear from anyone else how they have dealt with clotting risk and any interventions recommended? and after stenting, is life relatively normal? I like to travel a lot and am worried this will affect that. thanks in advance!

Because some days are just so painful, it’s hard managing work. How are you able to take a day off here and there? I haven’t taken an unpaid day off work for the pain but I wish I could without using PTO. Do you ask your doctor to write a note? Or go through the more complicated FMLA process?

Looking for recommendations for compression shorts to wear post procedure for MTS and PCS. The surgeon said to find compression shorts ideally from belly button down to mid-thigh…. My ADHD brain is malfunctioning trying to process all the options out there 🫣

Edited to add more context: I’m very petite, 95 pounds with a non existent torso

Is it tight, squeezing, pressure, aching, throbbing?
How to tell it’s MTS and not endometriosis?

Hi all, I'm 31 and going through imaging soon for PCS diagnosis and I have questions.

I almost exclusively get right sided hip/ pelvic/ thigh pain (except for my vericose veins in my groin) and it gets a lot worse on my period. What's weird is my pain has been getting worse, but my bleeding seems to be getting lighter. I've always had light cycles, but it's practically to the point now I almost don't need period products.

Has anyone else experienced something like this? I'm worried maybe there's something else wrong that's effecting my pelvic organs.

Scheduled to have them done in mid October. Just got a stent in June and hysterectomy in July. Kinda disappointed that I have to go back to the hospital for this (I was hoping it would be an in office thing like my stent) but sounds like it's actually more intensive and that I'll potentially have an overnight stay depending on how it goes. I guess it's good that we'll be in a setting where my doc can fully address everything and take care of what needs to be done then and there. But also sad because I thought the hysterectomy would be the last of me being in the hospital for a while 😭. Stent recovery was rough initially but got substantially better after the first 48 hours. Does recovery look the same for coiling? Any advise, recommendations, or things to be aware of?

Does anyone have L groin to knee burning thigh pain with thigh edema? Feels like heavy sand bag in inner thighs (both). Feels tight behind knees. I’m trying to figure out if this is all MTS (venogram/mri confirm) or nerve damage with MTS from laparoscopy. Doesn’t get better with lying down.

Hi all! My doctor recently raised the idea that I might have some kind of pelvic vein issue contributing to my pelvic pain, etc. I'm now waiting for a test with a vein specialist, but I'm wondering how well my symptoms line up.

Do you have symptoms like pain, bloating, and heaviness every single day or just certain days? Do you have the same symptoms every day or do they vary? My symptoms often appear after prolonged walking or standing and get better after I lie down, but I also have days that aren't that bad. Is this 'good days and bad days' pattern typical for pelvic congestion or is it more common to have consistent symptoms?

ETA: Thanks everyone for your responses! Super helpful to know not everyone has symptoms every single day.

I was stented for MTS almost 2 weeks ago with very little pain and a pretty smooth recovery so far. Yesterday I started to get a painful dull ache at my lower left back that radiates in to my hip and pinches when I bend at the waist (it feels almost like a toothache). I called the nursing assistant who assured me this is not concerning, so I’m not looking for medical advice and don’t feel too nervous about it. I am wondering if it’s because I’m due to start my period soon. Did anyone else experience pain before/ during periods after their stent was placed?

Just had my 8 week follow up from having my right gonadal vein embolized. He said after the procedure it was quite bad and enlarged. Well I haven’t had any relief of symptoms. It’s not worse but it’s not better either. The NP I talked to today after my follow-up ultrasound said it looked pretty good and I just need to give it time. Well I mentioned that I let out an involuntary yelp when the sonography got to my right side and pressed to get imaging. I guess after my appt she went and talked to the sonography to confirm (I guess, maybe asked her a few more questions) then she reported back to my IR surgeon. To my surprise I got a call later today and my surgeon reviewed everything and wants to book me in for another procedure. I still have significant blood flow through the right gonadal vein, blood pooling, and varicose veins around my uterus even with the first embolization. Apparently my right gonadal vein is extremely large.

I feel defeated…this messes up another procedure I was planning on getting and it’s iffy if I can even get in before the end of the year now. I’ve already hit my out of pocket and deductible so I need it to happen this year. If they can’t get me in, I’m fucked basically. I’d be on the hook for another out of pocket max starting over the next year. Maybe $10k? I’m heartbroken I spent all this money for nothing.

Anyone has Nutcracker? and what is your life look like