Pelvic Congestion Syndrome

[jlk1973]

Although I have been told that I don't need to look for a "cause" of my lymphedema in both lower legs, I have continued to search. In a CT and an ultrasound large veins were found around my uterus. I am told that I have Pelvic Congestion Sydrome, which is basically varicose veins in my pelvis. Is this the "cause" or not? I don't have the symptoms that come with PCS so treatment is up in the air right now.

Any ideas?

Thanks!

[cpthomas]

Hello jlk1973,

I am a lymphedema therapist and was fascinated by your question. I have never heard of Pelvic Congestion Syndrome but from the way you describe it sounds very plausible to me that this could be the cause of your lymphedema barring any other surgery, radiation, trauma, etc.

I do know that when someone has chronic venus congestion in the legs, on the cellular level a true lymphedema will eventually develop. This is because the lymphatic vessels penetrate into both the venus end and the capillary end of the arteriole (this is the place where the oxygenated blood gives nutrients to the cell and the cellular waste material is absorbed from the cell into the lymph system)...anyway the backup of venus blood (which contains metabolic waste) creates congestion in the system and eventually there will be too much waste sitting there for the lymphatics to absorb...so then the lymphatics also become congested and this creates a true lymphedema. So I can really see how the same situation could develop in the pelvis if the veins are getting congested.

The great news is that no matter the cause of the lymphedema the treatment is the same and your condition will hopefully respond to Manual Lymphatic Drainage and compression at the abdomen/legs.

I hope this info helps and please don't hesitate to write back with any more questions or concerns.

Thanks,
Christine

[jlk1973]

Thank you so much for giving me an answer! Neither my doctor nor my lymphedema therapist could answer it! Since diagnosing this, my therapist has stopped the massage of my abdomen. Is that ok? I don't have any edema there, it's all from my knees to my ankles.
One of my main reasons for trying to find an answer, other than it's my personality, is to make sure that it's not primary and to make sure my kids don't have to worry about it.
Do you think I need to pursue this more with a vein specialists or just consider this the cause? Would doing anything to the veins lessen the swelling in my legs? Maybe not now, but later?
As you can tell, I'm not quite at the acceptance phase yet.... I would still rather just get rid of it!

Thank you again for clearing up many issues for me!

[cpthomas]

You're welcome and I'm glad the info helped. I can totally understand needing to know the "why" of something...every piece of information that you have helps you understand how your edema is affected by different factors and what you can do to best help yourself.

I'm not sure why your therapist is not massaging your abdomen unless he/she feels there is some medical reason not to? All MLD sessions should include massage to the neck and abdomen, and in your case I would also do massage over both armpits and down your trunk to encourage some lymph fluid to move out of the abdomen and get cleared through the armpits. I don't think the massage would do any damage in the abdomen, although maybe your therapist was told differently by your MD? The only reason I can think is that perhaps there is a blockage in one of the veins and the MD thinks compression would damage it...I would definitely ask your therapist or the MD why no massage is being done on the abdomen and what the concerns are.

I am not sure if there is anything that can be done for the Pelvic Congestion Syndrome itself, but it probably wouldn't hurt to be seen by a vascular surgeon just to find out if there is anything they can offer you. You might also find that wearing compressive pantyhose, which would give some support to the veins in the pelvis and might help clear the edema from your legs faster.

All of this is obviously just my two cents, without having seen you and/or speaking to your doctor I am just guessing. But I do think you should pursue some answers from your health team so you can feel as if you're doing all you possibly can to manage the edema.

Thanks!
Christine

[jlk1973]

My therapist was massaging my neck, armpits and trunk as well as my legs. She is still doing all but my abdomen because of the veins.
Can I ask you your thoughts on The Jovi Pak? I have seen the web site and would like to know if it is an option for night time instead of wrapping? I handle the garments well during the day but everytime I have to round up the materials to wrap both legs everynight, I get depressed! I see my therapist today and am going to ask her but thought I'd get your opinion too! Here in Nebraska no one is open to change, so I'm pretty sure what her answer will be!

Thanks again for all your help!

[cpthomas]

I am a HUGE fan of the Jovi Pak. The most important thing is to get the proper fit so if your therapist isn't a fitter she may send you elsewhere to get fitted. I think you can search on the Jovi website to find a distributor near you if your therapist can't get one. I honestly feel that this device works BETTER than bandages when you get the proper fit because I find people tend to be more compliant with using it because it is easier than bandaging.

The device is much faster to put on/off than bandages and my patients report that it is more comfortable. Also, the foam inside the Jovi pak keeps your edema very soft which makes it easier to handle all around. I think it's an excellent tool and recommend it to most of my patients...they all tell me it feels like getting out of jail to be able to pull that on versus dealing with the bandages every night!

Good luck and please let me know if you need further info.

[jlk1973]

I just wanted to double check with you on the Jovi Pak. My therapist FINALLY got back with me and said that I would have to bandage underneath the Jovi Pak. Of course from your reply and what I have found on the internet, I am having a hard time believing her. But I wanted to double check before I found a certified fitter.

Also, now that this has been "called" Primary, by eliminating every other possible cause, does that make it hereditary?

Thank you again for all your help! Too bad you didn't practice in Nebraska!

Thanks!

[cpthomas]

Hi Jen,

I'm not sure that there is a definitive way to say that this is hereditary...it could run in the family but then again it could just have been an abnormality unique to your anatomy...if you have or want to have children it doesn't hurt to keep the info about lymphedema in the back of your mind for them but it absolutely does not guarantee that any of your kids would have lymphedema...in addition to lymphatic anatomy being very different in each person, artery and vein anatomy is as unique. I wouldn't let it be a huge concern.

As to the Jovi pak, you do not need to wear anything underneath it. Some people like to bandage OVER the Jovi Pak if they need a lot of compression or have a lot of fibrosis then wrapping over it is a very aggressive and effective technique. Jovi also sells something called a Power Sleeve (they may be calling it a Jovi Jacket now)...anyway, it is a lycra sleeve made to fit over the Jovi that provides extra compression...in most cases this or the Jovi Pak alone is sufficient compression for night time. If you are bandaging nightly now I think you will love the Jovi Pak because it is more comfortable and much quicker to put on/off. Please let me know if you have any other questions I can answer about it.

Take care,
Christine