hi :)
there is no cure as the veins are essentially ruined. there is coil embolization. and for those who dont have a severe case and for the groin and legs it is injecting a sclerosing agent for the veins to die off.
please read all the post posts on this forum, i am sure they will help you. i should assume you would have some simmilar symptoms to me (beside the low back pain) such as the lack of blood flow to your upper body?
so i take it you have been officially diagnosed? i can suggest what i did, i rang the offices of many specialists (interventional radiologists) and asked if they have/do treated/treat pelvic congestion syndrome.
has only one doc told you they cant do surgery?

Hi there. Thanks for your reply. I was reasonably healthy till 1996, when I developed a blood clot in my leg. My vein anomaly was diagnosed a year later. I went to the Mayo clinic for a consultation for a by pass, but was told the risks outweigh the benefits. This anomaly is very rare. I have seen MANY specialists, and they have no surgical treatments. I found the Pelvic congestion syndrome on facebook, and after reading the diagnosis I was relieved to know that there is people that I can relate to!!! I have all those symptoms, but having no inferior vena cava makes my symptoms worse. My main complaints is low back pain- pressure, and burning pain in the back of my legs. I also suffer from chronic ovarian cysts. My doctors/specialists can only suggest pain meds, but i'm honestly tired of it all!!!! Im going to be looking into this syndrome more and printing some info off for my docs to read. Maybe ill finally find some relief.... Thanks for takin the time to write back...R

i have printed off all conversations also.
hey im on the facebook group ;) infact i am the admin to the group: zabrina.
i find it interesting that it started with a clot in your leg.. was it a DVT? i joined the DVT group and there are some women who think and whos docs have also told them that their leg clots/varicose/DVT's are likely from pelvic varicosities (pelvic congestion).
i have the same lwr back pain, and burning that covers my buttox/ hips/ inner thighs(or all over too)/ vagina and down my legs.
i can only imagine how bad you are with out a inf.venacava. i too feel alone thinking i am so much worse than others. i can not go out and do anything! every minute of every day is hell and debilitating. i am waiting for surgery.
join the DVT grp too

Is the Facebook page for Pelvic congestion syndrome private?? What surgery will you be getting??

absolutely not private! anyone can join, it's a general group. but i see you have already joined :)
im having coil embolization. they were hesitant about my internal iliac vein (are they the colateral?)
because he has never done one, they are difficult and more uncommon. i am still to have my pre op appointment to find out what they can do and if they will do my iliac (i need that one done). and i am praying this procedure helps and makes me better.

have you got severe hypertension??

Yes, I do have hypertension. The collateral veins that I have, compensate the return of blood to my heart because I have no IVC. The valves are weak in all the collaterals, so I have severe pelvic congestion which causes the extreme low pain/pressure.

wow, i never met anyone with the same hypertension problem from the pelvic varicosities (in your case also the venacava.) the iliacs or the pelvic veins in general that are affected are all meant to return venous flow back to the heart. but unfortunately doctors can be ignorant in thinking it can affect the whole body so badly.

does your body shake and tremor inside? do you get any of the things i have posted about like numb ears/head pain etc?

Moon, I have finally found someone to "fix" me. Your hypertension is actually an odd symptom. I have found nothing that correlates to this in the literature on this. I wonder if it is just an autonomic response to your pain? The tremors and what-not correspond to hypotension, which would make sense if you have a lot of refulx. Thanks for the response in the other discussion, I had a very tough weekend and have not been on. When are you having your embolization done?
May, where are you located at? Did you go to Mayo in Rochester, MN or one of their satelite facilities? Your missing IVC is really rare. I cannot even imagine, I have never seen it and I am a cardiac nurse. If you're in the midwest, let me know and maybe we can arrange for info sharing. I am seeing an IR in Omaha and will feel him out re: this. Have you ever considered a hysterectomy in correlation to any other treatment to the veins themselves? There seems to be some estrogen component to weakening the vein walls also. I imagine that your main cause of this is the missing IVC and the collateral circulation, ovarian cysts (particularly PCOS) seems to increase your liklihood of developing these varices too. Hang in there and keep sharing with us. Hopefully, within the groups, you'll get some more ideas of ways to go for treatment. I have had cancer and many other medical problems and I have never been as miserable as I have been the last 10 weeks since this has gotten so bad. I will do anyhting I can do to help you out so you don't go through this any longer.

i cant believe i wrote hypertension. i meant hypotension!! firstly i wrote a response explaining how hypertension can give tremors and that it is possible to have hypotension from varicose veins etc.. but then i realised i had wrote it wrong above, that i was meant to type hypotension!

not everyone may develop it & we all get affected differently and the impact it can have on ones body is also different. tremors, from lack of blood flow and the weak heart beat.. it is very hard to explain what i feel.. its the immense pooling pressure in abdo. it is not a response to pain. i have felt if this 'one thing was shifted' (before i got diagnosed and did not know what was in my abdo) that all my upper bodily symptoms/tightness would be relieved. i have found literature on this (extreeme varicose veins & hypotension).. i will have to look at my bookmarked pages to find it for you. of course it is very possible for one to get hypotension from this condition! it affects the bodys normal blood flow.. it is a disruption. and it affects me very badly as i am 156cm and 45 kilo.

http://www.dailystrength.org/groups/pelvic-venous-congestion-syndrome/discussions/messages/8296704

here is the link for hypotension and varicose

here is a thread/post i made on hypotension and the links to the websites to show this.
http://www.dailystrength.org/group...

i cant believe i wrote hypertension. i meant hypotension!!

not everyone may develop it & we all get affected differently and the impact it can have on ones body is also different. tremors, from lack of blood flow and the weak heart beat.. it is very hard to explain what i feel.. its the immense pooling pressure in abdo. it is not a response to pain. i have felt if this 'one thing was shifted' (before i got diagnosed and did not know what was in my abdo) that all my upper bodily symptoms/tightness would be relieved. i have found literature on this (extreeme varicose veins & hypotension)-(see below to see the weblinks) of course it is very possible for one to get hypotension from this condition! it affects the bodys normal blood flow.. it is a disruption. and it affects me very badly as i am 156cm and 45 kilo.

ok here is a thread/post i made on hypotension and the links to the websites to show this.
http://www.dailystrength.org/group...

Moon, I didn't see your reply, I never got the notice. Hypotension makes a lot of sense in your case. Hope things are going well for you.

I'm disappointed that everyone seems to be deleted and that this is so old because I wanted to weigh in on this topic since my brother suppers from the same condition.