Has anyone had ovarian vein embolisation?

Posted , 6 users are following.

I have pelvic congestion syndrome (various veins on the pelvis).

I'm having ovarian vein embolisation at the end of the month and a bit nervous of the procedure. They are going through the groin. I'm not having sedation just a bit of local where they are going in through my groin. Just wondered what you expect.

No horror stories please. I'd rather not know 🙈.

Thanks in advance

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  • Posted

    Hi Gillian

    I had it done in November at Guys and St Thomas's. Please don't be nervous. The procedure was fine. There were times of pain which I think was when the dye was going through the veins, but just a wince worth. I was out of hospital two hours following the procedure, and then got the tube home and back to everyday life.

    I personally found that my PCS symptoms remained bad for 3 weeks after the procedure which really worried me as I had been given the impression that I would get the benefits nearly immediately. However they started to improve after the three weeks.

    The only thing is that those symptoms are coming back now so I'm waiting to see my consultant again. But for the time that they went away it was bliss, so I hope yours is resolved with the embolisation.

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    • Posted

      Hi

      Did you have any follow up after your procedure? It's awful that you had the procedure things seemed OK then the symptoms start to come back.

      Did you happen to have any veins in the back of your legs that improved after the embolisation? I've got some big veins across my bottom and down the back of my leg from my groin. I really hope this procedure will help to deflate those veins. I did hear it should improve the appearance of these veins. I really hope so.

      Good luck with your follow up.

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    • Posted

      Hi

      I had an ultrasound about 2 months after the embolisation which showed the pelvic veins were responding well. I then had a follow up with my consultant about 3 months after that. I told the consultant at that appointment that the pain from my veins in my leg had not improved but the general ache and pressure on my abdomen had.

      Things had been getting better but it is only in the last month that it has been getting worse. I have another appointment with my consultant in about a week when I will stress that my abdominal aching and swelling is getting worse again. I'm hoping it will just be a matter of embolising another couple of veins.

      I have also come to dread my period as it all gets very bad then.

      I have veins getting worse on one of my legs only. It has continued to get worse even after the embolisation which makes me think they didn't get all the veins.

      I hope to have the worst vein taken out with the NHS. But there isn't much point worry too much about the leg veins until the cause is resolved. I too had hoped that the veins in my legs would improve after the op.

      I really would love to know more about what caused this. It doesn't feel like there is much research taking place and the gps seem to think it is a rare condition but I think it is more common than is documented. I read one forum post who said she thought it was a hormone imbalance which I have wondered. My two babes were also quite on the large side (I'm very petite) so I've often wondered why they were big and now I wonder if there is a connection with the veins... maybe one day I will know. I find that being active helps but sitting brings the symptoms out.

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    • Posted

      Oh I really hope for you its just a matter of blasting a couple more veins to completely atop the aching for you.

      I dread my periods too!! Some moths are fine bit others oh my I can't function and just want to cry. I feel like everything will fall out of my under carriage!! 😱 my legs gets to heavy and painful. I've had 3 babies. I'm a size 6 and one was just under 9lbs. I really s7ffered at the end with the heaviness feeling underneath. It was so uncomfortable.

      Yes it doesn't seem a very recognised condition by GPs which is quite shameful as I've heard it's 1 in 6 women this happens to. I think these women just probably think it's part and parcel of their cycle. I had to diagnose myself and tell my GP what I had!!

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    • Posted

      I'm very strongly considering getting a coil fitted to stop my periods. I was thinking about it today and although my veins in the legs flared up during my period, the discomfort in my belly only started after my periods came back post breastfeeding. Worth considering?

      Good luck with your procedure and do post to let me know how it went. I will update after I've had my next consultation in two weeks x

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    • Posted

      Hi

      I has that suggested to me but I don't fancy the insertion of the coil. Ouch. Hopefully this will work. I'm still not nervous I don't understand why. Usually I'm wetting myself before anything getting done to me. I guess I will wake up in a panic but you've said not to worry.

      I forgot to have my asprin my letter said to have 300mg 2 days before procedure so 600mg over 2 days. Just had 300mg so far but didn't want to take say in the morning I hope 300mg will suffice!! I can't believe I forgot. Oh dear. I will let you know how it goes

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    • Posted

      Hi

      Well I was all done by 10.30am. The procedure took an hour. I got the left and right side veins done. Apparently my veins were BIG!!! the whole thing was fine. Just a tiny bit of discomfort getting the numbing injections but only lasted seconds. The rest I did not feel a thing just a bit of tugging about at the entry site. I was worried over nothing. I felt very calm for me actually. I was like why aren't I worrying lol. I think you telling me it was OK made me feel more at ease. I was very well looked after in the day unit too. Glad is wasn't sedated in the end as it was completely pain free. Phew.

      So let's just hope it worked. Time will tell. Let me know how your appointment goes in 2 weeks. Been told I have to take it really easy 48 hours then OK to drive.

      Gillian

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    • Posted

      Hi

      Yes I hope it works too. My vein is still poking out near my under carriage though lol but I'm guessing the procedure won't have worked overnight!!

      Can you remember how long it took for the appearance of your veins to settle down? I'm so impatient. Wonder what my next period will be like. Arhhh I don't like this "wait and see" game. X

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  • Posted

    Sorry, never had this procedure,

    but am very interested how you were diagnosed?

    Via Doppler Ultrasound or via MRI with contrast?

    Thank you!

     

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    • Posted

      In my opinion, GPs don't know about PCS so don't pick up on it. So although I had been asking the Dr about a few of the symptoms I was diagnosed when I was referred to a consultant about varicose veins on one leg.

      As part of getting those varicose veins treated I was sent for an ultrasound on my legs which showed that the issue wasn't with the veins in my leg. My consultant then sent me for an MRI but had a good idea at that time that the issue was in my pelvis.

      Im based in the U.K.

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    • Posted

      Hi there.

      I'm based on UK too. In Cumbria.

      I agree with you about GPs. I had to basically self diagnosed myself with my symptoms on the Internet. I went back to my GP and said this is what I have and I need it treating!

      I was referred to hospital for an ultra sound on my abdomen which revealed larger than average veins in my pelvis. They then referred me to have an MRI on my abdomen to confirm the size of veins.

      I've been able to have this procedure done on the NHS as it's a medical condition. I'm getting it done next Tuesday. I'm quite nervous as there's no sedation or anything. They are going through my groin but if it doesn't work that way I will need to go back and get it done through my neck!!! That scares the life out of me!!

      I'm hoping it improves the veins in the backs of my legs and around my groin area. I've had 3 children and I'm 40. I'm hoping it works as most months when I have the first day of my period I feel like all my insides will fall out of my undercarriage!!! Plus my legs feel extremely heavy and the only thing to take that feeling away is paracetamol and a hot bath. I've been like this for years and I've had enough.

      Have you been referred for any treatment?

      Gillian

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    • Posted

      Hi Sanya

      Yes I was first diagnosed with an ultra sound then referred for an MRI with contrast.

      Having my ovarian vein embolisation done Tuesday next week.im very nervous as I don't know anyone that's had it done.

      Gillian

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    • Posted

      Thank you!

      I have just found out after asking and reading this post,

      that most IR do NOT check for compression of left renal vein,

      when pelvic congestion is present.

      This is utmost important as the pelvic congestion could stem from the left renal vein compression (nutcracker) and an embo will make everything WORSE in that case.

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    • Posted

      Hi Sanya 

      That is interesting - is it something you have been diagnosed with. I have heard and read about nutcracker syndrome but assumed it wouldn't apply to me. I've had MRI scans before each embolisation so assumed that anything like nutcracker would be picked up on that. 

      I still have a large issue with the veins on my right leg (not the left) which continue to get worse and I'm at a bit of a loss where to go from here. I'm waiting to see my consultant again so maybe will ask about nutcracker when I see him. 

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    • Posted

      Hi Sanya, actually in my case this is the first time that this procedure was done in my country. My intervential radiologist and vascular surgent were great and seemed experienced with other vascular problems but not with pelvic congestion syndrome but decided to go with the procedure since I was in so much distress and had no other option. The radiologist only accessed my ovarian veins during venography and found both to be faulty so he embolised them the following day. He said that if the abdominal pain and pressure persisted after a month that we would do the venography of the illiac veins next. I am not sure if he could see something like Nutcracker syndrome or May Thurner syndrome from the ultrasound or the MRI with contrast that I did before the venography, I just assumed that he could and that he eliminated it.

      Now 4 days after the embolisation of my ovarian veins I can not stand for longer than 10 minutes without my legs getting all tingly with pins and needles kind of pain and as soon as I sit my legs start to go numb and anxiety gets me. I will probably have to go to the ER tonight since it is holiday and my doctors are not working before Thursday. Has anyone had anything similar after their procedures?

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    • Posted

      Hi Roger,

      Thanks for your reply although it scared me even more. What did your doctors have to say? How is it possible that they did not work out the problem is by now? I as seeing my vascular doctor tomorrow and will see what he has to say.

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    • Posted

      Oh no, that doesn't sound good. I hope it settles. May Turner Constellation (doesn't have to be Syndrome and blood clot, 'just' compression, my daughter has it already, but not so severe that we put a stent in yet in teenaged years) can surely be quite 'easily' and well knowledged investigated.

      If you had nutcracker syndrome, meaning the ovarian vein left being used as a collateral, then you would have more flank pain, more abdominal pain (again) due to having cut a valuable collateral.

      Yet I would look left right and center as exclusions are also peace of mind.

      There is always the question why someone developed pelvic congestion and the issues seem to be not always 'just' faulty valves itself. If they were faulty valves, then the embolisation usually brings great relief. If it was due to overuse and pressure by an issue somewhere else, this issue is not addressed with embolisation, hence persists.

      All all the best and that you can get helped!

       

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    • Posted

      Not I, my poor young daughter.

      The ignorance about nutcracker is so huge, that even imaging centres -especially if going via tech - make a lot of mistakes from wrong position, missing velocity measurements, not knowing about all the diagnostic criteria or simply omitting or downplaying findings, even this is not business of imaging, it is business of the clinician to make sense of imaging, if it was coincidental finding (yes, that is possible too) or if it was cause for a symptom.

      Nutcracker is not automatically picked up in an MRI scan. It depends what for the MRI scan was ordered, indicated. Radiologists do not have ample time to look at 'everything' and the protocols run from energy to slice thickness and planes, is different as per indication, also the body area they cover.

      If you had a vascular imaging (MRV in this case) with a hint to look at nutcracker up at kidney area not only for pelvic congestion in the lower area, then yes, this should have been checked.

      I always request imaging for myself and look for myself as it was overlooked.....

       

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    • Posted

      Hi Roger46028,

      unfortunately with ovarian vein gone, you cannot regrow that one.

      I have no horror story about the embolisation itself.

      No worries. This seems to go quite well and to plan.

      I have the urge just to say, be careful with the procedure decision to exclude nutcracker as a cause of pelvic congestion. If the cause was a valve failure, coiling might very well help. Otherwise it wouldn't be done at all anymore if each and every embo didn't bring any relief.

      If you had nutcracker, a left renal vein compression, that needs ovarian vein and hemiazygos vein to get kidney vein blood somehow to the vena cava, embolisation will not address that and make it worse. So bad, that pain will be more and kidney starting to suffer in its function.

      There are very few surgeons who know how to fix an embolisation, that shouldn't have happened.

      Not because the embo went wrong, no, because the embo did not address the issue.

      Have you had your embo yet?

       

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    • Posted

      Hi Sanya. Yes unfortunately I've had the embolisation performed and have had a bunch of weird and wonderful symptoms since. Have gone from very healthy to only just functional. Pain in my lower back and left each day, lightheadedness, weakness in limbs, bowel issues and tinnitus. Really wishing i didnt have the embolisation performed unfortunately. I havent been diagnosed with a compression and really hoping it is not the case. I'm looking at having the coils removed as i hate the thought of them in me. They've caused me nothing but pain unfortunately.

      If there was a compression would the body not grow more collateral pathways to relieve veinous pressure?

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    • Posted

      Oh dear Roger,

      That's not good news.

      The coiling itself went without a problem. Right?

      It always depends on volumes and sizes.

      As far as I know from 100s of patients with nutcracker and ovarian vein embo/coiling experiences, there is no way to make up the amount of blood that the ovarian 'highway' was able to carry in volume as a collateral into uterus vein net to the other side to vena cava (unsuccessfully for ovarian vein itself going into pelvic congestion).

      Veins are not just built, small veins are used more and go bigger (and also suffer going varicose sometimes). Capillaries can form, but they are tiny. Far too tiny to make up such volumes per heartbeat, that the left renal vein would carry to the vena cava.

      You have other collaterals like the hemiazygos up the spine, but it is too little.

      The pressure of veinous blood into the kidney remains, causing pain, also the adrenal glands are sitting on top of it too impacted in function.

      All what you describe sounds awfully familiar to have an embo going well, but not addressing the core issue of a left renal vein compression and making the pressure into kidney bigger hence.

      I have no experience with coil removal. 

      I just fear, that removal only will not be beneficial as there were symptoms prior coiling.

      People in forums have to do coil removal AND nutcracker surgery in one go to be helped.

      If you have a left renal vein compression (nutcracker), please join relevant facebook groups to get experiences and also doc names where to go to.

      It's a long path.

      My daughter suffers hugely and we will loose our home if we had to go overseas for surgical treatment (talking 80000USD and more) as we are stranded here it seems with ignorance, but health is the greatest wealth... yet we do no overhasty decisions, for the moment gaining weight to get the aorta and SMA angle less acute and see if it helped.

      There is weight gain (trying more visceral fat to gain fat pad around aorta and widen the space between aorta and SMA, if nutcracker was there and not retroaortic),

      Aspirin and even Tadalafil trial prior surgery.

      There are no more other conservative trials as it is a physical issue.

      Downward dog (yoga) for ten minutes and pregnancy belly binders some think to help, too to shift the left renal vein into different position for some drainage.

      But the rest is invasive, expensive surgery......

      best of luck!

       

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