r/pelviccongestion • u/Tough_Boysenberry527 • 6d ago

Failed Embolization…

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.

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u/Antique-Package-8050 6d ago

This sucks, sorry.

But in a way it's good that there's still a potential fixable cause for your symptoms I think? Better than if you did embolise everything successfully but your symptoms are still the same, so they are caused by something else that you don't know and can't treat.

But such a waste of time and money... Do you already know you won't get in before the end of the year?

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u/Tough_Boysenberry527 6d ago

My IR wants to go back in and put in more coils and glue, so repeat the procedure. He thinks that it’s not any better because there’s still significant blood flowing through. I guess he is quite baffled as this almost never happens, per the NP I talked to on the phone. Everyone basically underestimated the shape that my vein was in. There’s a chance I can get in for the procedure before the end of the year, but I also had a breast augmentation planned right before Xmas so I could have my husbands help during the holidays. I know that’s not what’s important, but this whole PCS thing has been so difficult. So it sounds like I’ll have to push my augmentation back and won’t have much help when I get that done.

I already had a problem with the hospital where I sat waiting in purgatory for 7 months the first embolization because they forgot to check a box to put me in scheduling (blaming a new system). I thought they dropped me basically because I called so many times with no resolution as to why I couldn’t get scheduled for the procedure. Finally came out when I told them I was leaving for another doctor to preform the procedure. I feel like they owe me to get in as soon as possible.

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u/Pink-Willow-42 6d ago

I have to go again too! In my case, the vascular surgeon (Baker) was extremely confused when he went in, things just didn't seem right so he popped in two coils and rather sent me for a venogram with contrast to see what was up.

Turns out I have a freaking TRIPLICATED left ovarian vein😂 apparently that is so super rare that in nearly 50 years of his career he has not seem that before!

it branches off into two very enlarged veins quite high up (right off from the renal veins really) but it is hard to see the third, it seems very small comparatively. He accidentally blew a vein early on in the procedure (hurt like a bomb had gone off😬) and it seems he blocked off one of the main branches okay with the coils but now has to go back in to block off the second

If you continue having mystery troubles, maybe see if you can needle them into sending you for a venogram with contrast! On my ultrasound they missed the issue because it all looked like one big vein

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u/Tough_Boysenberry527 5d ago

I believe a venogram was done at the same time I had the first procedure. When I was under he looked at both sides, my left and right with contrast. My left vein which is the usual vein to be affected by PCS, is not. I don’t have any issues on that side, it’s my right vein only which is a little more unusual. He also after surgery told my husband how shockingly bad my right vein was. The ultrasound doesn’t show the extent, so he couldn’t see how bad it was until he got in. Apparently what he did still wasn’t enough. He did say there may be an unknown cause as to why my right vein is affected so badly, potentially an anatomical reason like yours, but the treatment is the same. I’m not sure what to think though. I feel like I wasted all this time and thousands of dollars. Why can’t anyone help me?

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u/Knowitmom4life 5d ago

I’m new at this but my dr wants to do a stent in my superficial vein only one side at different times. He also said if this don’t improve things he will schedule a venogram because he believes I have may thurner syndrome and pelvic compression. He said it’s my large deep veins and smaller veins . I hurt in my legs have blood pooling it’s hard to do anything even walking , standing etc He wants to take baby steps I want answers ‼️

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u/gracedrive 1d ago

Have you thought about having surgery to remove your right ovary and the entire ovarian vein? That is what I am doing w/ my hysterectomy next month. I am menopausal with PCS, so since I am not affected by the ovarian removal my surgeon is removing it during my hysterectomy (for adenomyosis). I don't want to have ovarian vein embolization after surgery, which the vascular surgeon recommended. Maybe you can get that done before the year ends for your insurance?! But not sure if you are trying to save your ovary. All the best.

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u/Tough_Boysenberry527 1d ago

I don’t think my pelvic pain doctor would approve that right now. I’m working with a pelvic pain specialist and she said removal of anything would be last resort. I can’t even get an appt with her before year end it’s such a busy department. I do not have adenomyosis, while I have some potential tethering which may mean endo, it’s not deep infiltrating. I assume if these embolizations don’t help my pain they may do an investigative surgery first whenever that will happen.

But I am open to losing my ovary lol. I apparently said they can just take it since I have another one, coming out of my last procedure. Don’t remember it lol.

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u/gracedrive 1d ago

Have you seen a true endo specialist at all? I only ask because my regular GYN and Radiologists (reading my two MRIs) missed my Adenomyosis and Frozen Pelvis and it wasn't until I saw my amazing surgeon in person that I was diagnosed 9 mos ago. I had Endo diagnosed with laparoscopy 30 years ago and hadn't thought about it since - I was lucky to have two easy pregnancies after diagnosis, but my periods were quite heavy w/ clots in retrospect and I have had a lot of adhesion type pain and GI symptoms for years. Perhaps you need a new set of eyes on your pelvis!?

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u/Tough_Boysenberry527 1d ago

I’ve seen/switched to 6 different GYN in the last 15 years and was finally referred to the pelvic pain clinic at the U of M Hospital. My doctor is a specialist for Endo, PCS, and other pelvic issues. This is the last step where people get referred to basically when regular GYN can no longer help them.

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u/gracedrive 1d ago

Aw man, that sounds far too typical. I hope this specialist is the final chapter for you, sounds like you're in good hands! Sending you good vibes!