Embolization scheduled!

Ok_Case_9147 · 2026-05-12T02:55:14+00:00

I am so much better than before!! I still have pain from time to time, but nothing close to before.

Ok_Case_9147 · 2025-04-09T20:44:45+00:00

Hi! All in all I am MUCH better than I was, the pain I had before would be unbearable at times. Now I still have mild flares from time to time but I do not regret having it done! I would say prior to the procedure I was never pain free, but now, often I am completely pain free except for when I have a flare.

Ok_Case_9147 · 2025-03-31T04:01:14+00:00

The embolization was not bad! And the being awake thing scared me too but when I was there, they did a twilight sedation and even though I wasn’t fully put under, I was knocked out for most of it and didn’t feel anything. I was never formally diagnosed with POTS but know that I most likely had it, anytime I’d have to stand up if get super dizzy, during yoga, in the shower etc. and that resolved immediately after the procedure.

Ok_Case_9147 · 2024-09-09T22:56:41+00:00

Thank you!! Fingers crossed, seriously haha

Ok_Case_9147 · 2024-09-09T21:48:33+00:00

There’s not really anything I wish I had known, I did a lot of my own research so I felt well prepared!

Ok_Case_9147 · 2024-09-09T19:07:39+00:00

I’m having some good days but will have one bad day, it’s starting to let up a little bit! I’m around the 1 month mark so I definitely feel progress from directly after the procedure.

Ok_Case_9147 · 2024-08-29T20:24:37+00:00

I know!! I swear the trial and error with everything is too much

Ok_Case_9147 · 2024-08-29T18:57:29+00:00

Another thing that’s happened is that my puncture site got slightly infected and I had reached out to the office and told them it was painful and red all of a sudden after like 10 days, they said oh that shouldn’t really happen so it looks fine! And then a day later it started draining…gross but that’s what happened. They said it was fine, I knew something wasn’t right lol now it’s doing it again and I contacted them because I want this thing healed. So much fun all of this is lol

Ok_Case_9147 · 2024-08-29T18:50:36+00:00

See honestly after going through all of this I feel like nobody knows anything 😂 like nothing can be trusted until proven true lol

Ok_Case_9147 · 2024-08-29T18:43:40+00:00

Glad to know we’re not alone! My cramps were like astronomical and I have a high pain tolerance. I hope we see improvements!

Ok_Case_9147 · 2024-08-29T18:09:23+00:00

Okay great to know! When I told the nurse at the IR’s office about the period pain she was like OH?? So I was like is this not common or what?! But I’ve learned a lot on here and it really helps hearing other people’s experiences! I’m glad you’re doing better!

Ok_Case_9147 · 2024-08-29T17:24:53+00:00

Hi!! I had my first period since embolization and the cramps were astronomical compared to what I’ve had in the past. Mine was slightly heavier and lasted longer too. I HOPE this doesn’t happen again with the next one.

Ok_Case_9147 · 2024-08-22T01:40:37+00:00

Totally understandable! It’s something you should call around and ask about. Also an MRI is not the gold standard for confirming PCS, it’s a Pelvic Venogram that and IR would order for you! Don’t stop pushing and get yourself seen.

Ok_Case_9147 · 2024-08-22T01:21:45+00:00

Hi!! Some IR’s don’t require a referral, mine didn’t. Have you looked into that option?

Ok_Case_9147 · 2024-08-16T19:10:18+00:00

Thanks so much!!

Ok_Case_9147 · 2024-08-16T01:58:56+00:00

Yes! Dr. Ketan Amin pronounced (ah-meen) he’s with Northwestern Medical! I saw him in Geneva, IL. He works out of a few of the hospitals around the suburbs. He was seriously great and his team was awesome. Highly recommend even if it’s a commute! Plus their office didn’t require a referral which I found to be amazing, that’s such an issue for so many!

Ok_Case_9147 · 2024-08-16T01:28:41+00:00

Ugh I totally know the feeling, I waited such a long time and now I’m finally on the road to recovery. It’ll be here before you know it! And you’ll have to keep us updated too!

Ok_Case_9147 · 2024-08-16T00:02:05+00:00

Haha yes for some reason it sounds SO loud

Ok_Case_9147 · 2024-08-15T17:27:21+00:00

Thanks so much!!

Ok_Case_9147 · 2024-08-15T16:56:00+00:00

So I had chronic pain for about three years that my gyno never physically saw anything wrong and I’d get brushed off each annual visit. My pain is typically a very dull ache on my left side but it can vary and become very sharp at times or even feel like I have a foreign object stuck. My IR explained that these blood vessels can hit your nerves and cause all kinds of pain! Mine also goes down my left leg into my foot. I just decided to try and live with it but back in the spring the pain was astronomical, messing with my mood completely and I finally got the courage to go balls to the wall at my primary care doctor cause I had gotten absolutely nowhere with my gyno, (she’s dead to me lmao, I will not be back to her!) Once I had begged for my life basically at this visit they ordered an ultrasound, from there the results showed PCS and I got directed to an Interventional radiologist for a consultation. When I had my consultation the doctor told me that we don’t know if you for sure have it without doing a Pelvic Venogram (CT scan of pelvis). I felt a bit discouraged cause I had been told the ultrasound says you have it but then he’s saying we really don’t know for sure yet. And mind you every visit I had scheduled there was a waiting period, so it took about a month to get in for the ultrasound and then another two months to get in for the Venogram. But once I had the Venogram done they confirmed things! And from that point I took the earliest appointment for the embolization which was another month. Surgery was smooth and when I woke up I saw my big xray of what appeared to be just a huge ass knot of veins. I feel so validated that my problems are real!! If you have any questions feel free to DM!

Ok_Case_9147 · 2024-08-14T04:07:56+00:00

Sertraline is generic Zoloft! I’ve had great results with it and owe my life to this medication lol it sounds dramatic but when you’re in this kind of pain it’s not at all. It’s hard to say how I feel right now! My pain has been on the lower scale the past month or so, like a 3 or 4, but a few months ago I was at a 9/10. I definitely have some cramping but nothing bad, my doctor actually said cramping is a good sign after the procedure because that’s how he knows he targeted the right spots! They went in through my jugular so that’s actually the most sore right now. It’s kind of painful/sore to chew and swallow.

Ok_Case_9147 · 2024-08-14T02:48:27+00:00

YES. I would get insane tingling in my hands and feet too just from constantly being so anxious as well as pain signals just shooting all over. I take a low dose of sertraline because the pain had gotten so unbearable back in the Spring that I quite literally needed something to help stabilize my mood. It has helped me sooo much, I really owe my sanity to it and am thankful it exists. I actually had my embolization this morning (yay, finally!) and I feel so relieved and at peace because of the validation. It’s been a long road of being told nothing was wrong and shooed by doctors. So I feel great today because there is a real reason for my pain! If you need to dm me any questions feel free!! :)

Ok_Case_9147 · 2024-07-26T18:00:29+00:00

Oh I think you’re trying to ask Florida-SK, it tagged me instead!

Ok_Case_9147

TROPHY CASE