u/Bulky-Run-6144

I’m just wondering if anyone has experiences with getting iliac stents placed. Both of my iliac veins are compressed. This is mainly for varicosed and pelvic refluxing veins, but I also have bad leg pains and varicosed veins that affect my right leg mostly. I’ve been suffering with bad pelvic pain for about 10 years now. I’ve never had a clot or anything of that nature that I know of, but I’m just wondering about the long term issues with getting a stent.

I’ve been experiencing pelvic pain for about 10 years which has worsened since having children. I was diagnosed with PCS finally as the cause. I had one hospital system that only said my right ovarian vein was enlarged an refluxing and was going to do an embolization, however crickets from them and it’s been 5 months now. I went to a vein surgeon and PCS specialist recently and after a more thorough ultrasound (going higher up and lower down) he said I have compressions in both of my iliacs which is causing the PCS. My iliacs in general are very large, 20mm and the compress down to about 2-3mm.

He is suggesting stents in both of my iliacs. I’m reading that this is more of a fad type procedure lately and to make lifestyle changes instead. The only problem is I already make those lifestyle choices. I was a gymnast and college athlete in my youth, I currently still exercise, lifting weights and running. I also have a very healthy diet and actually always have and I still have these compressions and varicosed veins internally and on my legs.

I’m just wondering if he is suggesting for me to get the stents because there’s no other lifestyle changes for me to make?

I’m 36f 5’6” 130lbs.
Epilepsy at 18 (haven’t had seizures since then)
GERD
Migraines more recently
Recently diagnosed with EDS clinically(but whatever)
Pelvic pain (PCS)

I was recently diagnosed with varicosed uterus and an enlarged refluxing right ovarian vein at a hospital system and was supposed to get my ovarian vein embolized. Well it didn’t work out there and they don’t know when I can get in for the procedure, maybe a year from now. So I went to a vascular surgeon who specializes in pelvic congestion and he just told me I have compressions on both my right and left iliacs along with the enlarged right ovarian vein. He said I need to get stents in both of my iliacs two weeks apart. I’ve been reading about long recoveries and more pain than doctors are saying.

Has anyone had easy and quick recoveries with stenting their iliacs? My doctor said I could get the procedure done on a Thursday and potentially be back to work on Monday. (I sit at a computer mainly)

Time off isn’t something I get right now.

I was recently diagnosed with EDS in a clinical setting by a primary care doctor. Subtype is unknown obviously. I am very hyper mobile, but that was more the deciding factor for this doctor to say I have it. I went to the doctors because I was having a week long migraine and I told him about my history and family history.

My history official Diagnosis

Epilepsy- unknown cause

Some enlarged refluxing veins internally (PCS)

Raynauds

GERD

Migraines

Family History (I think is relevant)

Maternal Grandfather- 3 heart attacks and aortic aneurism

Maternal grandmother-major stroke in late 40’s, paralyzed on left side

About 6 months ago I woke up with excruciating neck pain, on the back right and side of my neck. The pain was intense and lasted for about 2 months. I couldn’t move my neck. I went to the doctors and they gave me muscle relaxers and offered PT. It also sent burning sensations that I still have to my right ear and jaw. I’ve also had a lingering low level headache behind my right eye as well. This pain flares up again sometimes but not as bad. I experienced this once when I was very young, maybe 8-9. I remember being in so much pain and couldn’t turn my head. I slept on the couch for a week upright. My parents never took me to see a doctor they assumed I pulled a muscle from gymnastics.

My whole right side is feeling off. Ive had really bad arm pain starting in my shoulder and running down to my hand. I have the burning sensation on the back right of my neck and now in the front right also by my clavicle sort of. My right eye is droopy and I have a low level headache behind it. (My right eye has always been more closed than my left) I’m right handed but left eye dominate. My right side is the side that has the enlarged refluxing veins and varicose veins in my right leg.

I’m just trying to make a connection with all of this. Do you think my neck pain was actually a Cervical artery dissection or something? Just the persistence of symptoms in my neck that won’t heal.

I was changing my 4 year old daughter after she went number 2. (She didn’t wipe very well) while I was cleaning her up she kept saying she had a hair down there, I wasn’t paying attention really until she really started digging at it. I went to help her and check it out when I realized it was attached to her. It was a dark 1-2 inch pubic hair. Is this normal?

I’m getting kind of worried because she frequently gets very red and irritated down there and she always says it hurts or itchy. I’ve taken her to the doctors countless times to get her looked at and they say nothing is wrong, wipe better.

I’ve been diagnosed with PCS through a venous ultrasound showing my right ovarian vein enlarged and refluxing. Unfortunately, that hospital system is going through insurance nonsense and are really busy, so I haven’t been able to get ahold of them or talk to my doctors again. I was supposed to get an embolization in the vein but they haven’t called me for that procedure and it been 4 months since my appointment with the IR. Anyway, I gave up and went to a new vein clinic that deals with PCS. Of course they had to redo the ultrasound, but I was able to talk to the doctor after briefly. I have a follow-up appt with him next week to discuss all the results and treatment plans but he said he glanced at some measurements of my veins and said the majority of them were over 20mm. He didn’t specify which ones, but was kind of concerned. He talked about me potentially having a compression in my iliac vein and probably having MTS or something of that nature.

I guess I’m just filling in my own research while I wait for the follow-up appt with him, but has anyone had very enlarged veins? I assume he meant my iliac and ovarian veins, but I’m not sure.

I mean it says normal iliac vein size for a female is like 7-8mm, so over 20mm seems pretty enlarged. However, I assume there’s variations and many people are different and maybe it’s my normal?

I’m just curious why one of the best hospital systems I went to only diagnosed me with one vein having issues, while the doctor is saying I potentially have MTS and other severely enlarged veins?