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!!!

[jzyuvienco]

same here... everything is happening to me as yours for almost 18 years... no diagnosis though, but i've tried a lot of scans in different durations like before and after periods, injectables like GNRh and all but the diagnosis is sill unknown. I'm really tired of looking someone or something to treat my pain and even tried faith healers just to get rid of this. Unfortunately,  here in the Philippines, they never heard about PCS. Everytime i see a doctor i ask them firstly if they know PCS (in a manner that they wont get offended). Like a doctor, an accupuncturist of Philippine General Hospital. As what I've read about PCS, accupunture might help but just like other treatments, it did not help . Little that I know that it would only be another pain to suffer and additional to my expenses. O Lord! How I wish i could go places, cross countries to try their treatments.

[Mckenzey]

I have been diagnosed with similar issues. Left ovarian vein syndrome is close to or the same as Chronic Pelvic Conjestion/pain. Basically embolization is a short time fix and isn't the best option for most. I suggest first to get an ultrasound interior and exterior of pelvic region, then find the best obgyn you can and get these two procedures: Hysteroscopy/ Fractional DZmC first which is an Interior cleanup of all fibroids and polyps. Then in s few weeks do a laproscopy to check exterior issues, like cysts, fibroids and a better look at your enlarged vein and see if you have endometriosis. I am still recuperating from the last procedure but glad I got these done. It hurts but I can't tell it's better. Plan on 6 weeks recovery. If a hysterectomy is necessary then you will be onform at your post op visit. Endometriosis can cause heaviness and bloating in uterus, bladder issues, problems during constipation and bowel movements, and stomach issues. Causes of severe fatigue can accompany this too.

[Mckenzey]

Hope this message gets posted to Lisa Stone and Abby22 as well. I am 43 and have 3 children. Around December I got sick and had several things wrong with me. I saw several doctors who assumed I was depressed and tried to give me mental meds. No one listened to what I was trying to describe. Finally in April I was able to have an interventional radiologist tell me he knew what was wrong. The whole process was time consuming, stressful, and exhausting. At times I wanted to give up and still do. I am 2 weeks away from having the embolization done and very concerned. I went to an obgyn who told me this procedure would possibly be a mistake. Now I'm confused on what I should do. There is not enough info out there for this rare disease. It makes the task of deciding what to do impossible. I am lost. I don't know anyone with this problem and at times feel alone. Can any of you update me on if you had this procedure done or not?

[lymeball]

This is what I wrote to Abby22.  Doctors diagnosed me with Pelvic congestion, but I wasn't satisfied...
OMG Abby, I went through the same thing, but it wasn't utill I was trying to have children only to find out that it was extremely difficult to get pregnant did I seek help.  Doctors were puzzled with my condition as well.  I was sent home will all other tests coming up normal.  I had to find more answers so I did my own research and demanded I get check for something called Nutcracker Syndrome.  I ended up having this condition which causes secondary pelvic congestion.  I just had major surgery with Dr. Ralf Dilley in San Diego, Ca to correct this problem.  Nutcracker Syndrome is when your left renal vein is compressed by your abdominal aorta and superior mesenteric artery not allowing blood to flow through to the heart correctly on your left side, therefore, the blood finds an alternate route sending it downward towards the pelvic region.  You must demand you get an MRI on your kidneys, not just the pelvic as most doctors to which really gets me mad!!!!  I hope you will get this message as it was so long ago that you wrote your question...

[threemeises]

I also was diag with PCS. I found out after years of hurting. I was diag with endometriosis when i was a teenager. I recently had a bad episode with pain and had a lap done for endometeriosis. I didnt have that I was diag with PCS i have never been in so much pain. I was told by my ob that i would have to have a hysterectomy if i wanted the pain to be better. I am only 27 and i was 17 when this all started. I have heard of the other procedure but was told that it didnt work very well in servere cases like mine. I hope this helps anyone who needs if.

Jessica

[RosemarieHP]

Hi Lisa,

I was diagnosed with Pelvic Congestion Syndrome in April 2009, and had the embolization done in July 2009.
I was also told that it does not always take care of the problem. Two months later I am having symptoms again, not as bad as the first time, but if I have to have this done again, I will see a vascular surgeon.
What you said in your letter to Abby made alot of sense, because I think the blood just finds another way and dilates other veins.
Please let me hear from you, you can e-mail me at ***@****, I would very much like to find out, how your procedure went.
Take care
Rosemarie

[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.

[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]

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,