Interstitial Cystitis (IC), Pelvic Pain Support Forum User Group
any suggestions for PCS?
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This support forum is for those who suffer from Interstitial Cystitis and Chronic Pelvic Pain and for those who support them. IC is a very individual and often difficult to treat painful illness. IC often has many other conditions that exist along with it adding to the Pelvic Pain. This forum is to provide support, encouragement, and education so that together we can find treatments and hopefully someday a cure!

Founded by MSKshelly on September 22, 2009
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any suggestions for PCS?

Has anyone delt with Pelvic congestion syndrome? Why does this peak mid cycle? TTC with nasty pelvic pain isn't working real well. Sorry, just a little frustrated. My doc made the diagnosis but doesn't have any suggestions for how to manage it.
4 Comments
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489228_tn?1291535054
I actually also have PCS syndrome, along with IC etc.  PCS is basically varicose veins the Pelvic Region.  The blood flow in the region basically backs up in the ovaries,
the same way, or at lest it feel like it to me, urine back up in the kidney with a kidney stone stuck in the ureter, (I have lot of stones too).  The blood flow usually decreases when we get off our feet and put them up.  This is why it is often hard to diagnose.
Most tests CAT, MRI etc are done laying down, so the blood flow decreases etc.
The best way to diagnose PCS is to have a standing MRI done with a trained radiologist who knows how to look for PCS.

I was "Lucky" in that one time on my CT scan the blood flow on one side was bad enough that it showed on the CAT scan.  

There are several treatment options, I personally went to a Pelvic Pain PT, who taught me to move the blood flow through my lymph system and how to tell the difference between my IC, kidney stones, and PCS.  It is hard to find info on PCS, but if you go
to our IC Support website MOARK IC there is a menu item on there for Pelvic Congestion syndrome with some links and articles etc.

The other ways it is treated is chemically using strong birth control meds, to stop your cycles, I forget the name but they can also basically stent the veins themselves that are an issues, and at times they do a complete hysterectomy.  IF  the doctor does not treat the veins the bring blood into the pelvic region a hysterectomy usually won't be enough.  This is a very abbreviated  overview and the articles on the MOARK IC site go into more detail.

Hope that helps you!

Shelly
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1408746_tn?1283678948
I was diagnosed with pelvic congestion, but wasn't satisfied! This is what I wrote to some others on this forum:
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 tests coming up normal except the pelvic congestion. I had to find more answers so I did my own research and demanded I get checked for something called Nutcracker Syndrome. Well, 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 which causes the symptoms that you are having.  You must demand you get an MRI on your kidneys, not just the pelvic as most doctors do which really gets me mad!!!!  I hope you will get this message as it was so long ago that you wrote your question...
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1444831_tn?1284659630
I was really interested to read about Nutcracker Syndrome as a possibility here...thanks so much for the info.  I live not far from this doctor in san diego, good find here....it would definitely explain my blood flow problems.  Thank
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1408746_tn?1283678948
Hey, Please let me know how it went with the doctor, and if you found that it was Nutcracker.  I think this is definitely a problem that goes under diagnosed.  Good Luck!
Cristina or lymeball
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