Ehlers Danlos Vascular Form?

[cardiactec]

Hello all!!

It's been awhile since I have been on here! It's been a crazy road! I am now out on disability so I am hoping to catch up with some of you more often now.

I had a question for you EDS'ers (specifically anyone who has been diagnosed with vascular form). I had a laparoscopy a month ago for endometriosis and the doctor said she saw "varicose veins" on or around my uterus. She said that is a very odd finding in someone who has never had children and then went on to question whether or not I could potentially have the vascular form of EDS. I PRAY I don't. I will find out in a few weeks as I just got back from mayo clinic and they ran all the blood work for it.....Anyone have this? been questioned of a connective tissue component because of such a finding?

Hope you all are hanging in there!

Angela.

[juliegee]

Hi Angela-

Something similar came up recently with chatter about pelvic congestion, which has been linked to dysautonomia. It occurs when blood pools in veins in/on your uterus. Maybe THAT's what the doc saw. Google it to learn more.

Julie

[kerrilyn]

Hi,

I posted about pelvic congestion syndrome (varicose veins of the pelvis) last week http://dinet.ipbhost.com/index.php?showtopic=14921

I have endometriosis too, and have not had children either. While multiple pregnancies is more common with PCS, it's not the only time it can occur. It's something I've been reading about lately as a possible connection to my pelvic pain. I have a CT scan at the end of the month. Not sure if it will show anything because if you are in a supine position the veins will not be as swollen. My pain could also be nerve related and I did have an dx of degenerative disc disease in my early 20's.

I don't know a lot about EDS. I didn't think it's something I could have, but now I'm not so sure. Hope you get some answers.

[cardiactec]

mayo clinic wanted to do some sort of "rectal manometry" on me as i have problems with constipation and they mentioned pelvic floor dysfunction. i never had the test done though.....

[juliegee]

Hi Angela-

I guess it wouldn't hurt to have the test- it seems pretty do-able. My son had it when he was really young- 2 or 3 y/o. They were looking for Hirshsprung's Disease (another cause for chronic constipation) and didn't find it. They put a balloon in his rectum and filled it. He had the sensation of "having to go." Hence, he was considered OK. Obviously, he wasn't- but this test didn't show anything.

Coincidentally, I saw on "The Doctors," the same test for PFD yesterday. After learning about PFD, it sounds very much like something "we'd" have, BUT I am very doubtful that biofeedback (the treatment of choice) would fix us . In other words, I suspect your problem is more complex. In PFD, the nerves in the rectum don't work together in a coordinated fashion to effectively produce a bowel movement. Well, duh . I suspect the nerves throughout your WHOLE GI tract aren't working in conjunction with one another.

The motility specialist at Hopkins described the GI tract as working like a squeeze pop. (You really feel it when you swallow food a bit too large .) The coordinated pushing of food, directed by nerves, moves the food from the esophagus, to the tum, small bowel, colon, and eventually the rectum. If those nerves aren't working well together ANYWHERE in the GI tract, a problem occurs.

This is nothing you don't know. I just don't think the PFD treatment will work, but it's worth a try.

Julie

[cardiactec]

Hi Angela-

I guess it wouldn't hurt to have the test- it seems pretty do-able. My son had it when he was really young- 2 or 3 y/o. They were looking for Hirshsprung's Disease (another cause for chronic constipation) and didn't find it. They put a balloon in his rectum and filled it. He had the sensation of "having to go." Hence, he was considered OK. Obviously, he wasn't- but this test didn't show anything.

Coincidentally, I saw on "The Doctors," the same test for PFD yesterday. After learning about PFD, it sounds very much like something "we'd" have, BUT I am very doubtful that biofeedback (the treatment of choice) would fix us . In other words, I suspect your problem is more complex. In PFD, the nerves in the rectum don't work together in a coordinated fashion to effectively produce a bowel movement. Well, duh . I suspect the nerves throughout your WHOLE GI tract aren't working in conjunction with one another.

The motility specialist at Hopkins described the GI tract as working like a squeeze pop. (You really feel it when you swallow food a bit too large .) The coordinated pushing of food, directed by nerves, moves the food from the esophagus, to the tum, small bowel, colon, and eventually the rectum. If those nerves aren't working well together ANYWHERE in the GI tract, a problem occurs.

This is nothing you don't know. I just don't think the PFD treatment will work, but it's worth a try.

Julie

I have had problems since infancy with constipation. not to get too grotesque here, but my parent's had to use vaseline on me when I was still an infant and help "manually". I also ended up at the age of 5 or 6 having impacted bowel and was vomiting bile, which led me into the hospital. it's weird though because through junior high/high school those things weren't an issue anymore, neither was eating/stomach issue/nausea,etc.....then 9 months or so after graduating high school i started getting the constipation issue again.....then the stomach stuff.....ick. not fun.

I would have had the test, as embarrassing as some might think it is, but I have had worse....so it really wasn't an issue of embarrassment as to why I didn't have the test, but more out of frustration of what they ended up telling me about my tum (their test was "normal" but that the small bowel was the issue). I thought I had started to piece the puzzle together as i was diagnosed with gastroparesis (moderate case) in maine and the POTS stuff, so I was hoping for ONE answer/diagnosis to all this and instead the picture became even more skewed......

sometimes I wonder the more you investigate your symptoms with tests and such (especially if their repeat tests like my gastric emptying) you become more confused about what is going on and thus, treatment options don't end up treating a specific diagnosable UNDERSTOOD problem, but the approach then becomes throw a medicine at the person now that there isn't a definitive concrete NAME for their problem and see if it "sticks". I don't care for that mentality, so it might be stubborn of me to have not gone through the manometry test, but I didn't want the picture to be skewed anymore. last thing we all need is contradictions in our medical files! I like to keep things straight and this last trip to mayo didn't solidify the straight line but instead got me feeling like I'm walking in circles again!

I agree also with what you said about biofeedback ....I highly doubt that would solve the problems I have had literally since I was in diapers ....