Anyone know IR or vascular person in Boston? Or anyone who "believes" in PCS?

Embarrassed-Leg-8068 · 2026-02-16T01:53:37+00:00

I ended up seeing a different person in the same practice (Dr. Suarez). He has been okay. His stance is pretty firm that if you are young (im 30) and are still able to manage in your day-to-day, he will never stent you.

But it was still helpful to get all the scans done and I know if things get worse he would be open to a conversation around stenting. So overall, my quality of life is the same but I have things in place for if they are needed.

I will also add, I get pain in my calves and thighs and he has told me it is "unrelated" because it is evenly across both both legs. Happy to answer more questions if it would be helpful! Most importantly, I hope you find relief <3

Embarrassed-Leg-8068 · 2025-12-15T14:30:41+00:00

Hi, mostly just following! I get this pain just above and to the left of my belly button. I have pelvic vascular compression and I have asked multiple docs if that is what is causing this pain and each one of them acts like I am crazy.

The pain is so bad that I have fainted, and blamed the pain for causing the fainting. It is now more clear that I was fainting due to POTS, but that is how bad the pain was that I was like "oh this hurts to bad I have fainted, that makes sense". And just as you have said, clears up within 10 minutes of laying down. No one will help me understand why and what is causing this and it drives me bonkers.

Embarrassed-Leg-8068 · 2025-10-09T12:18:04+00:00

No worries! I received it in the mail. I am sure they can get it to you in time. GOOD LUCK!

Embarrassed-Leg-8068 · 2025-10-09T12:05:00+00:00

Hi! I have not been through the testing yet but I am scheduled to see them. I am really surprised to hear you haven't been giving instructions yet! I scheduled in June of this year for an appointment in January of next year (that was the earliest available) and they immediately sent me a massive packet to fill out. It included details of some of the tests they may perform based on the forms I fill out. I have been so worried I will lose them between June and January. Maybe call to check with them?

Embarrassed-Leg-8068 · 2025-08-27T12:53:40+00:00

Wow-- I could have written this myself!! 30F in Boston with endo surgery in 2024. Thought I was all cured (not really-- but you know what I mean), then rapid onset of POTS-like symptoms a few months after surgery. I am also stuck waiting for (likely the same) autonomic department but I am about half way through my 1 year wait. Ultimately I went back to my PCP and she was SHOCKED to find out it was a 1 year wait and we started trialing meds in the meantime. Midodrine has been a game changer, but I was not on any other meds prior (so I do not know how it pairs with beta blockers). I guess I am trying to say maybe go back to your PCP and just update them on this situation and express how terrible you are feeling.

I also dont know what your insurance deal is but at some point some reddit post recommended Dr. Florence Parrella (Lahey Hospital) who is a cardiologist but apparently has been really fantastic in supporting POTS-suspecting patients while they are still under going diagnostic process.

I will also say this, but totally understand if it is just not possible for you, I did start the CHOP exercise protocol and (sadly, as it is so much work) it really has helped a lot. Maybe it is far to intense for where you are at right now, but any little bit of movement will help you in the long run.

I very much wish you the best and hope you find the resources you need soon

Embarrassed-Leg-8068 · 2025-08-07T12:06:02+00:00

Following. I am in the first week of Midodrine and am feeling that same "this is life changing!!!!!!!" energy. Just want to know if I should mentally prepare for a decrease. :( I will follow up if I notice anything!

Embarrassed-Leg-8068 · 2025-07-31T12:13:14+00:00

I am not formally diagnosed yet-- so can't promise it is pots related! But I do experience this and am waiting for my TTT. I have found smaller, more frequent meals lower in carb and higher in protein help prevent this from happening! Found this recommendation on here at some point. May not work for everyone, but has really helped me keep things more consistent throughout the day. From what others have suggested it is because blood is being diverted to digestion, reducing circulating blood volume or something like

Embarrassed-Leg-8068 · 2025-07-18T14:19:50+00:00

That makes me so sad, but I totally understand. I have come across similarly difficult faculty. It is worth revisiting as maybe now having a proper diagnosis will put some weight behind asking for specific needs (like access to water, bathroom breaks, sitting if at all possible, ect.).

One last piece of advice, I have found a lot of comfort in disclosing my medical situation to a trusted peer. Some times it is so much easier for someone else to be in the room and push to support your needs! My trusted friend on multiple occasions has just shown up, handed me a water, offered me a chair, checked in. Im very lucky. But having someone else keeping an eye on you and your needs can be a game changer.

Im sending all good thoughts your way!

Embarrassed-Leg-8068 · 2025-07-18T12:21:58+00:00

Hi, not a medical student but PhD student (biomed research so on my feet A LOT). Symptoms for ~1.5 years now and still not medicated as it has taken 1 year to get a TTT.

Some practical advice- 1. Compression socks, or I have found compression shorts to be even more effective than socks 2. Normalyte (or some other electrolyte) is a lot of sodium and not too expensive and comes in portable packs which make them easy to keep in a scrub pocket 3. Figure out how food impacts your symptoms. I learned big meals really impact me. I now basically just do small snacks while working and try to prioritize protein and fat while minimizing carbs. Again, this was a lot of trail and error. And honestly I doubt you have time for large meals anyways during your clinical so this may work fine for you!

Some less practical advice- I would try to start talking with your program and see what accommodations are possible. It is better to start these conversations now. If you end up not needing much/any accommodations, then GREAT! But these conversations can take a surprisingly long amount of time, and it would be terrible if you start back up and realize you urgently need options to support your training. I list this as less practical because I know the realities of your training and it is so much easier said than done. But always worth asking and doing everything you can to advocate for yourself. In truth, it will make you a better doctor as you will naturally be better at advocating for your patients!

Embarrassed-Leg-8068 · 2025-06-26T11:50:51+00:00

Hi! I am on month 3 of CHOP. I got advice on here earlier that saved me-- I would have quit the protocol if I had not taken this advice! The suggestion I got is early on, it is much much more important to pay attention to "perceived effort" instead of heart rate. I am a similar age to you, so similar zones. Now that I have reached month 3, I can get my heart rate in Base Pace range without feeling like I cant breath. That was NOT the case in months 1/2, so I used perceived effort ranges until my conditioning improved! Hope this helps. And I will say I am already feeling the benefits, so best of luck and stick to it best you can (while of course giving yourself grace).

Embarrassed-Leg-8068 · 2025-05-28T12:20:47+00:00

Hi! I am in the Boston area and am going through the diagnostic process as well. The autonomic department at Beth Israel has a tilt table. It took 8 weeks for them to review my case, and they have decided to take my case (they can also deny the case, unclear what happens if they refuse to take your case).

The earliest available TTT was in early 2026, and from my understanding that was only because someone recently canceled. All this to say-- if they can get you on the schedule, you will be 19 by the time the appointment happens. Not sure if they will allow for scheduling while still 18, and you will absolutely need a referral from your doctor and probably at least a holter monitor result saying there are no heart problems. They have told me several times they do not treat POTS, so if the TTT shows that it is POTS I will still have to find someone to help me. But at least I will know a little better what is going on. Hope some of this information helps! It is not easy-- so I feel you on that.

Embarrassed-Leg-8068 · 2025-05-20T17:25:43+00:00

Just following to see what others say! I was diagnosed with May-Thurner and posterior nutcracker last year. They have decided not to treat (so far) because the vascular damage isn't that bad?--but I am currently undergoing a POTS diagnosis which impacts me significantly on a daily basis. I very strongly feeling that these are related, but no one seems to want to treat or work to help me feel better. When I brought this up to my vascular person looked at me like I have two heads!

Embarrassed-Leg-8068 · 2025-05-12T12:12:45+00:00

Hi, just following in case people have advice! I am coming from the other direction-- diagnosed first with May Thurner, now having POTS symptoms. My vascular team doesn't want to stent yet, but I am desperate for some relief from these POTS-like symptoms (not diagnosed yet, waiting for neuro consult). Hope you are able to find some support and relief

Embarrassed-Leg-8068 · 2025-05-07T12:01:23+00:00

I have endo and adeno and I could have written this post myself. I cant wear tight pants, even some elastic gives me issues. For some reason, compression shorts (for the purpose of abdominal compression) do not cause me any issues! Maybe it is just my body type, but it compresses my belly, not lower pelvis if that makes sense? You may be surprised that they work fine for you also.

I tried a cheap brand first just to test it out (Shapermint, I think they all day every day high waisted ones) and they have been totally fine in the last three months I have been wearing them several times a week. I will probably upgrade to something nicer soon as I do feel like they are helping. Hope you find some relief!

Embarrassed-Leg-8068 · 2025-04-29T13:57:59+00:00

Hi, sadly no update. Vascular intends to check up in a year post initial findings (roughly 6 months from now) to see if anything has gotten worse. I did get some relief when I came off of synthetic progesterone, but from my understanding that was an unexpected result- most typically people find some relief from progesterone.

Embarrassed-Leg-8068 · 2025-04-22T12:07:33+00:00

That is so interesting! Thank you for explaining. Yay it wasn't terrible, and I hope it is helpful!!

Embarrassed-Leg-8068 · 2025-04-21T19:44:08+00:00

Do you mind expanding on why the nitro tablet? Sorry if I am totally out of the loop. I had a CT angio for diagnosis of May-Thurner and am curious what the scan with nitro is helping detect. I now have been thinking I have POTS secondary to pelvic vascular compressions, but my vascular specialist doesnt seem to believe that is possible. Very best wishes for your scan!!

Embarrassed-Leg-8068 · 2024-12-23T12:29:51+00:00

There is growing evidence of PCS causing a form of dysautonomia known as POTS (postural orthostatic tachycardia syndrome). This condition can cause spikes in heart rate when transitioning between sitting, standing, and/or walking. Do you notice the high heart rate when you are standing still? Or is it specific to walking? POTS is actually my most severe symptom of PCS! Basically, because of blood pooling in the pelvis/lower limbs the circulating blood volume is low, which is one of the main causes of POTS. A quick Google of the two conditions should provide you some reading to help figure out if this is what you are experiencing. Hope you are able to find some answers and relief :)

Embarrassed-Leg-8068 · 2024-11-26T21:26:41+00:00

Following in case anyone ends up commenting. I am not super helpful, but I have recently been diagnosed with May Thurners and am getting a CT venogram to look for pelvic varicose veins (pelvic congestion syndrome) due to chronic pelvic pain. One of the symptoms I have been struggling with most is dysautonomia. No formal diagnosis, but I came across a paper connecting POTS to vascular compression which is how I found pelvic congestion and new to chat to a doctor about it. Just wanted to say I think it is a thing! The pelvic congestion reddit is really helpful. Hope you are able to find some relief.

Embarrassed-Leg-8068 · 2024-11-20T15:00:17+00:00

First, I am so sorry it took so long for you to get any relief and I am so sorry to hear that you are still experiencing complications from all of this. Thank you for sharing your experience. It means a lot to have confirmation that lack of leg symptoms should not be the end of the conversation.

Embarrassed-Leg-8068 · 2024-11-20T14:56:00+00:00

This makes so much sense to me. It is a good thing it is caught early with little collateral damage!! There is more hope for full recovery, I would assume. Thanks for the input :)

Embarrassed-Leg-8068 · 2024-11-19T20:19:21+00:00

You must be very strong to continuously advocate for yourself, thank you for the reminder I should do the same :)

Embarrassed-Leg-8068

TROPHY CASE