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
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.
Sorry, never had this procedure,
but am very interested how you were diagnosed?
Via Doppler Ultrasound or via MRI with contrast?
Thank you!
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.
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
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
Have you had your procedure yet? Don't worry, it's not that bad. I had two procedures in the last 6 weeks. I have had pelvic pain and vulva and back of thigh vericose veins. They put a stent in my illiac vein and just yesterday I had gonadal vein embolization. They used coils and foam. The worse part is the numbing shot and pressure at the site where they put the catheter in, but it's not bad. About like a IV insertion, although the pressure when they are changing catheters is annoying. Also, when they inject the foam, I felt discomfort, but they gave me more sedation and that helped. Not a huge deal overall. Afterward for about a week, expect pain at site (neck in my case) and cramping.
Jury is still out on whether or not this will help my leg pain. I am assuming the pelvic issues will get better, although it's the leg that is the worse thing now.
Hi
I have my procedure in the morning. I'm dreading it to be honest. I wish I was having sedation. I'm not being offered any!! I will just have to be brave. I really want this to work. The misery I have when I get my monthly and praying it will improve the appearance of veins in my legs and bum.
I just want it over with really. Not looking forward to the 4 hour laying flat after the procedure. I will be just wanting to go home. Going to be mega boring. I hate hospitals too!! Arhhhhh I think I'm first on the list so maybe this time tomorrow I will be getting it done.
I didn't get a consultation so I called and had a quick chat with the surgeon so I don't feel well enough informed really. I just hope they can give me a shot of madazolam or something otherwise I will be shaking off the trolly lol.
Wish me luck. 😊
Hi GIllian
I'm sure if you tell them how you feel then they will sedate you. It is in no ones interests for you to be freaking out on the table.
I was given some sedation and then they let me go after a couple of hours. I didn't need to wait the 4 hours.
Hi
Well I'm not so sure they'll offer sedation. I doubt there will be an anethatist available 🙁. I love sedation. You just go to sleep and wake up and it's all done! I'm so scared. I'm such a big scardey cat. I don't think they'll even off any madazolam or anything to calm me down. You never know . I can only hope.
They say I'd be laid up for 4 hours but I'm hoping they'll let me go early. I really do. I will be mega bored especially if no Internet for me to go on my phone!! Arhhh.
I'm having coils put in but no foam as far as I'm aware.
I hope the day after I can take it easy but then I want to be back to the usual decorating and running around after the 3 kids. I'm too busy to be resting. I have so much to do.
Bet you're glad yours is all over with.
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.
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.
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!!
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
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
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
Fantastic - I'm very glad it went well. Fingers crossed that it helps. Keep me posted cx
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
Dear Gillian, I know this is an old thread but I just had my embolisation of both ovarian veins done 2 days ago and after they released me from the hospital I got bad tingling and cramping sensation in both my legs which isn't going away. Did you have anything similar after your procedure? Also how long did it take you to get better and how are you now one year after the procedure? Thanks
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.