Pelvic Congestion Syndrome

[Lisa Stone]

I have been diagnosed with Pelvic Congestion Syndrome - it took 15 years to finally find...initially I had mild discomfort on my left side, but over the years the pain and symptoms continued to get worse.  A CT scan revealed numerous dilated ovarian and uterine veins, that I am told can be treated by an Interventional Radiologist who performs a procedure called “transcatheter pelvic vein embolization.”  I am booked to have this procedure in 2 weeks. They go through the jugular vein in your neck and put coils around the veins that are dilated, this is supposed to block the blood flow in the problematic vein(s), allowing shrinkage and relief of symptoms. Has anyone had this procedure, and did it help alleviated the pain and problems? The doctor himself told me that I will likely have to have this procedure done over time and again, as the blood has to find some where to go once the vein gets embolized, often causing other new veins to dilate! Help please - need someones advice that has had this done before!!!

[Abby22]

I can't really answer your question because I haven't had it done before, but might in the next few months. I am a 15 year old female with what they believe is Pelvic Congestion Syndrome, after 8 months of left sided hip pain causing me to not be able to sit, stand or walk for long periods of time and a laparoscopy to remove an ovarian cyst. Naturally they thought the ovarian cyst was the problem because it was 5.7 cm but after it getting smaller and getting rid of it the pain continued, even preventing more with birth control pills. I must say it is a very difficult and stressful process to get the diagnoses, after a normal blood tests and x-rays we finally got the MRI which shows enlarged ovarian and uterine veins, that they believe are crossing and pressing against a nerve. Apparently it is rare in a teenager so they want more tests to confrim it. I have heard embolization works well but the doctors I have advise me not to have it done but to look for ways to deal with the pain, just because i am too young, and like any surgury there are risks, also they say it could go away on its own. Like I said, I can't answer your question but I would also like to know if anyone has had it done before and if it has helped, I asked a question if anyone knew someone young with it but didn't get a response. It sounds like you have had it for a long time, how do you deal with the pain? Luckily I am being referred to a pain clinic hopefully soon but it definitely limits my ability to do anything!

Anyway good luck with everything,

[Lisa Stone]

Do you know why you doctor says not to have the embolization done, is there a concrete reason? I might postpone my procedure cause I feel concerned that it may make the condition worse. I read on another forum some women's comments that have had the embolization, and some of them say that they feel worse than before. The neck method also sounds unpleasant, I think I'd rather have actual surgery, then they can actually get in there and freely work on the veins...maybe even drain them first before the coils go on to strengthen the veins, that way the blood wouldn't have to find another route to travel, thereby causing other veins to dilate. I have another appointment for a second opinion scheduled for July 10th with a different Intervetional Radiologist, I can let you know what I find out. You sound very mature for your age, and I am sorry you are going through this and have to experience this at such a young age. I have 3 children (one of who is your age, grade 9) so that is a possible reason why I have this problem.  If you hear anything more please update me. If you'd rather communicate by email, you can email me at ***@****, or if you or your mom want to talk directly you can call me collect at 416-787-9912. Take care, and email or call if you feel comfortable to do so.

[Abby22]

Thanks for your response! My doctors don't want the embolization done, partly because they don't know who would do the surgury since not too many IR's have done it on teens and partly because they say it doesn't always solve the problem, therefore they want to try other methods to deal with it. Since it is rare in teens they want to make sure that it is PCS so they are going to do more tests at Sickkids Hospital in July. If you arn't sure about the surgury it than its definitely important to get a second opinion! One of my doctors gave me a website with information so I will post it for you to look at.