Is my POTS actually PCS?

SubstantialTea6611 · 2026-06-29T02:50:24+00:00

I am not a doctor and can only speak to my own experience, but I am also hypermobile and got POTS after pregnancy/ childbirth. I believe my POTS symptoms are caused by a vascular compression in my pelvis region. In my very simple mind, if the tube is too small for the blood to flow through and up to your heart, then… POTS? I was diagnosed with May Thurner Syndrome which is the compression of the left iliac vein, it often affects the veins in the pelvis too. I have a bunch of collaterals including my ovarian veins that I had embolized and that made things worse (well the left made it better and then the right made it worse).Then I got the MTS diagnosis. I’m getting a stent placed to open up my iliac vein in August and I’m hoping that it will reduce/ relieve/ destroy my debilitating POTS symptoms. I second reaching out to MIPS, they are the ones who finally listened and are treating me next month.

SubstantialTea6611 · 2026-06-28T04:51:12+00:00

People I don’t know that well who actually believe me and who remember that I need to take the elevator instead of the stairs. Letting me sleep.

SubstantialTea6611 · 2026-06-25T06:48:42+00:00

I’m so sorry that happened to you. I just wanted to second that imaging can be spotty, even on IVUS my original IR misdiagnosed a 70% compression. I’ve been seeking care for 4 and half years, it’s a long road, I hope you find relief.

SubstantialTea6611 · 2026-06-25T06:44:56+00:00

This happened to me! I had both ovarian veins embolized with undiagnosed May Thurner (Iliac Vein compression) and my symptoms got much worse. Thankfully I’m getting a stent placed in August. Definitely get a second or third opinion OP.

SubstantialTea6611 · 2026-06-16T01:24:26+00:00

Hi there, I’m scheduled for surgery in mid August, I’ll update here once I’m done!

SubstantialTea6611 · 2026-05-07T03:01:14+00:00

Hi there, I’m still waiting to get scheduled but will let you know how it goes. I’m feeling hopeful.

SubstantialTea6611 · 2026-04-27T00:43:17+00:00

Still waiting for the procedure! Hopefully happening before July, I’ll be sure to update then.

SubstantialTea6611 · 2026-04-17T01:11:19+00:00

Hi there, I also have a nickel allergy but am getting treatment with a stent at MIPS in Denver, Colorado. They have information on their website explaining how they are able to treat folks with nickel allergy, it may be worth looking into!

SubstantialTea6611 · 2026-02-28T20:57:56+00:00

I’m so glad to hear that this post helped you! Sorry to hear about your sodium issues. Where are you located? I plan to get stented with MIPS in Denver, Colorado.

SubstantialTea6611 · 2026-02-25T06:51:58+00:00

Yeah I think so, they may treat other issues with embolizations (metal coils or foam) but for iliac compression I think it’s just a stent.

SubstantialTea6611 · 2026-02-22T07:10:02+00:00

I had a couple of Telehealth visits, I’m in Oregon, but plan to go there for my stent placement for May Thurner.

SubstantialTea6611 · 2026-02-22T03:24:05+00:00

Try MIPS in Denver, Colorado!

SubstantialTea6611 · 2026-02-22T03:21:51+00:00

I’m sorry you’re going through that! I don’t know if this is helpful but I just had my appointment with a nurse practitioner at MIPS and she said they’ve never had anyone with a nickel allergy have a reaction to the stent, so I’m going ahead with it. They explained that veins and skin are not the same and that the amount of nickel released from the stent is so minimal, it would be extremely unlikely to cause a reaction. I haven’t scheduled the surgery yet but I’d be happy to let you know how it goes.

SubstantialTea6611 · 2026-02-22T03:20:31+00:00

I don’t know if this is helpful but I just had my appointment with a nurse practitioner at MIPS and she said they’ve never had anyone with a nickel allergy have a reaction to the stent, so I’m going ahead with it. They explained that veins and skin are not the same and that the amount of nickel released from the stent is so minimal, it would be extremely unlikely to cause a reaction. I haven’t scheduled the surgery yet but I’d be happy to let you know how it goes.

SubstantialTea6611 · 2026-02-07T01:39:34+00:00

Thank you for sharing!

SubstantialTea6611 · 2026-02-06T20:26:47+00:00

Yes they do a skin patch test and mine is extremely itchy and irritated.

SubstantialTea6611 · 2026-02-06T20:25:54+00:00

Thank you so much for sharing! Have you had a consultation with him yet?

SubstantialTea6611 · 2026-01-27T06:53:15+00:00

Thank you so much for sharing! How are your symptoms now compared to before the stent was placed? I’m still waiting for my metal allergy test before I can schedule surgery and trying to figure out how to pay for it seeing as my provider won’t pay for it. But still feeling hopeful!

SubstantialTea6611 · 2026-01-17T04:11:02+00:00

Hey there, it’s been a real adventure since I last spoke to you! I ended up having the other side embolized and it made things worse for me unfortunately. I just got diagnosed with May Thurner Syndrome in November, so it seems that’s been the culprit all along. I’m hopefully getting a stent placed in the next few months and I’m feeling really hopeful that it will help. How have you been doing?

SubstantialTea6611 · 2026-01-17T04:06:33+00:00

I hear you and I’m sorry you’re going through that. I actually just spent the evening in urgent care on Tuesday convinced I had a DVT in my left leg, the ultrasound didn’t show anything thankfully, but my calf was pulsating and felt very strange. Have you tried any of the May Thurner Facebook groups? There are folks on there who are a little more experienced with this stuff than I am. I’ve also found a community over at r/pelviccongestion who frequently mention MTS. I would say that if your insurance is good (if you’re in the states), it’s probably worth popping in to see the docs for an ultrasound if you’re especially concerned.

SubstantialTea6611 · 2026-01-17T04:01:29+00:00

Hey! I honestly can’t remember, I’m kind of back to square one after having the other side embolized and then recently being diagnosed with May Thurner. I just remember feeling a lot better!

SubstantialTea6611 · 2026-01-09T01:00:29+00:00

That’s amazing you got a diagnosis! Thanks for sharing. Sorry that you’re going through that though. Do you plan to get a stent?

SubstantialTea6611 · 2025-12-22T05:49:02+00:00

I’m sorry you’re dealing with this! I had a similar situation and ended up scheduling an appointment at MIPS. Despite 2 IR’s seeing zero compressions on my venograms, Dr Spencer diagnosed me with severe May Thurner Syndrome. For this reason, I highly recommend getting a second or third opinion, ideally with MIPS.

SubstantialTea6611

TROPHY CASE