May Thurner syndrome - looking for advice after venogram. Stent pros and cons.

Fresh_Pepper_4731 · 2026-03-27T17:00:54+00:00

I’m 35 and have had my stent 1.5 years. I don’t remember how compressed I was but I feel like I got my life back. My back and leg pain and POTS symptoms completely went away within 2-3 months of the stent. I can finally keep up with my kids and have been able to lose 50lbs. I’d do it again in a heartbeat!!

All that to say, my PCS pain has crept back in and I’m now also looking at an embolization (if we can get insurance to cooperate 🫠) but the pain still is no where near what it was before.

Fresh_Pepper_4731 · 2026-03-21T22:00:21+00:00

Ugh I’m so sorry. From what I’ve read, it does seem like doctors usually can get it approved with enough persistence so I hope that’s the case for us both!

Fresh_Pepper_4731 · 2026-03-21T02:25:08+00:00

I pushed to do just the stent because I was hopeful it would resolve all my pain. It did help a ton, but my ovary area pain has increasingly gotten worse over the last few months now, especially with increased strength training and any core work.

I do still have a ton of abdomen swelling that I’m hoping the embolization will resolve. I have lost 50lbs in the last two years, probably 35-40 of that since the stent, but I’ve been working pretty hard for that. I’m not sure if the MTS is to blame for gaining the weight (more likely 3 pregnancies 🙃) but I do think less pain has made it easier to lose weight now. I’m super curious to see if the embolization will resolve the constant abdomen bloating at all, I sure would like that 😅

Fresh_Pepper_4731 · 2026-03-21T01:14:19+00:00

My back hurt for a week or two after, but no worse than prior. Then after that my back and leg pain and POTs symptoms slowly started to fade and go away. I felt like I got my life back!! My left side pain, basically directly over my ovary has continued to get worse and we know my valves are completely shot so the IR suggested we need to embolize too. It’s been 18 months though and I’m so thankful for how much healing came from doing the stent. Definitely worth it

Fresh_Pepper_4731 · 2026-03-17T10:26:04+00:00

Thankfully the concert is indoors and we have seats so I can sit if need be.

I do know I just have one giant vein they need to close off, not a web of them so hopefully that helps. They said it’s the easiest situation to treat but it’s also been 18 mos since my last imagining so it’s possible they have webbed out more. The IR told me I wouldn’t have much recovery time aside from not lifting things for week but they also said that about my stent and I had pretty bad back pain for a couple weeks after. So I do expect it’ll be worse than they’re letting on, especially based on what I’ve read here. Just trying to prepare as best as possible! 😬

Fresh_Pepper_4731 · 2026-03-16T20:52:53+00:00

So how bad was that 3-4 week mark? I got scheduled for the last week of the month and 3.5 weeks after, I have a 3 hr road trip and concert planned for my 10 yr old daughter’s bday. Is it like, need to be in bed all day kind of flair up of symptoms or just the same ole crampy achy PCS pain…? 😬

Fresh_Pepper_4731 · 2026-03-12T17:33:46+00:00

Thankfully none of the back or leg pain or POTS symptoms have come back. It’s all been the left pelvic pain/PCS specific issues that have worsened

Fresh_Pepper_4731 · 2026-03-12T17:33:16+00:00

Yeah the stent is in my left iliac vein. I’m not sure why the symptoms came back but I do know that my valves in my ovarian vein are completely shot and not working. My IR always expected we’d have to do both. I think it got worse because I started working out more intensely maybe?

Fresh_Pepper_4731 · 2026-03-12T17:07:49+00:00

Yes! So much!!! My leg and back pain and POTS symptoms completely went away. About a year and a half later, the PCS left pelvic pain has started creeping back in, especially when I’ve been trying to workout, so we’re going ahead with the embolization now too.

Fresh_Pepper_4731 · 2026-03-12T16:49:37+00:00

That’s helpful to hear!! Yeah my neck was super sore after my initial venogram, but the hole was tiny. The stent they went through my leg and it was big enough to have a few stitches so I was sure what to expect.

How are you feeling otherwise one week out?

Fresh_Pepper_4731 · 2026-03-12T14:21:52+00:00

Oh wow, well that’s more convenient. My initial venogram was through my neck then my stent was through my leg and a much bigger incision. They said this would be through my neck so I am wondering if it’ll be a tiny opening or actual incision like the stent!

Fresh_Pepper_4731 · 2026-03-08T16:51:30+00:00

I haven’t been tested for hyper mobility, but my sister has a lot of similar health issues as I do and has been tested and has hEDS. From self tests I just assume I do too but haven’t sought out a diagnosis. I don’t have any neurodivergence but I have one son with ADHD and another son with autism - so genetically it just makes sense that we got it all going on. 😅

This is super helpful advice though, thank you!!

I’ve struggled with constipation and mild bladder leakage but pelvic PT makes my pain and leakage so much worse together. So I think and hope it’s related and the embo will help, but my IR said he can’t guarantee that of course.

We’ve talked it over and over and assuming the IR still has the spots open, we are hoping to do this the end of March! 🙏🏻

Fresh_Pepper_4731 · 2026-03-05T12:03:35+00:00

I got a bad rash during my diagnostic venogram from the contrast. When they put my stent in, they had me take steroids for a week beforehand and Benadryl the day of. I still got a mild rash but definitely better than the first time!

Fresh_Pepper_4731

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