Nervous! Vein Embolism Procedure!

[aunie]

Okay, well I have POTS and I am currently untreated. My doctor wanted to wait and do more testing before we try another treatment, but he finally put two in two together! A few years ago I was diagnosed with Pelvic Congestion, none of my doc's put PCS together with POTS. Now I am kinda excited because he is pretty sure that this is what is causing my POTS, but I'm feeling a little nervous, almost like I don't want to get my hopes up that embolizing them is going to fix everything. I just don't want to be dissapointed. I have suffered a long time without proper medical attention, it took four years to finally get a POTS diagnosis. So I guess I'm just skeptical to think that it will make the POTS dissapear. I was wondering if anyone out there has had this treatment and if it significantly helped them. I have multiple large varicose veins on my uterus and those are the ones they can see on Ultrasound, they say it may be much worse. I guess I just want to know if I should have a reason to hope for some improvement.

[sue1234]

Aunie, well go right ahead and get them fixed so you can let us know if it helps!!! The reason I say that is we have talked about pelvic congestion as a possibility off and on for the last year. I just brought it up again yesterday in the "high b/p" thread. I'm thinking it could be a cause or even just a contributor to POTS, so I would be curious to know if it helps you. Who diagnosed it for you? Did you have other symptoms? Did your gyn diagnose them and then send you to who? Sorry for the questions--I was going to ask my gyn to get the ball rolling on me. I had AWFUL varicose veins in the vulvar area while pregnant, and am assuming that once stretched out so much, that they don't go back. I'm sure that indicated varicose veins within the pelvis also.

One key note in my history, waaay before POTS hit me, was when I was pregnant with the varicose veins so bad. I remember shopping and getting lightheaded. I never got lightheaded again until POTS hit, and I remember thinking that that was how I felt when I was pregnant.

[juliegee]

Hey Aunie-

I had this procedure done- for a different reason though. I had an enormous uterine fibroid- 10 cm that had grown very rapidly. The veins feeding my uterus & on my uterus were enormous and engorged. In retrospect, I wonder if this is similar to PCS, with a fibroid? An interventional radiologist worked on me for hours- shooting "pellets" into my veins to cut off the blood supply to the fibroid. My before & after photos are remarkable. The veins returned to a normal size after the procedure & my fibroid shrunk to 4 cm at last check.

I never thought about it, but my autonomic symptoms DID improve after.... although that wasn't the reason for the surgery

As far as discomfort- it was easily tolerated. I had read that this can be very painful. Literature likens the death of the fibroid to the pain experienced by heart attack patients- the death of heart tissue, etc. You aren't even dealing with that aspect. You will be awake, given minimal sedation. you can even watch the procedure on a screen as they work on you- like a video game- very cool. I spent the night as i had to be given VERY heavy pain meds to help me deal with the pain of the tumor dying. I suspect you may even be able to go home the same day...

Best of luck. PLEASE let us know how it goes & most importantly, if it helps!

Julie

[aunie]

Hey Sue, well we kind of found them on accident about two years ago. I was having a lot of flank pain with severe menstrual cramping. My family practice thought I just had an ovarian cyst, so we did an unltrasound and found them then. This was about two years after having dysautonomia, but I didn't know then that that was what I had. I followed up with an OB/GYN and he wasn't very worried about it, he gave me a script for yaz and sent me along my way(didn't take the yaz because I don't tolerate medications well). So I kinda ignored it and time went on. So I kinda put it on the back burner for the last two years because I've been so busy trying to figure out the POTS.

SO about 8 months ago I moved to Northwestern Louisiana from Utah and had to change all my doc's, but in doing so I finally got diagnosed for POTS, my cardiologist decided I should see a specialist because he knew what POTS was but didn't treat patients very often with it. So I actually looked up on the physician's list and found a doctor close to me. I'm still on a waiting list to see Dr. Levine, but in the mean time I have been seeing Dr. Amer Suleman in Dallas. He went through all my labs, x-rays and histories and put the two together. He is currently finding the right surgeon to do the procedure for me, he doesn't want to mess around. I find him to be very thorough and investigative. I'm really glad I have been able to see him, plus his office staff is super nice!

When I was pregnant with my second child I remember having poor circulation in my arms and getting dizzy on a few occasions, but I just attributed it to being pregnant. After having my daughter everything kinda fell apart, that's when the dysautonoma starting setting in, I don't think the POTS got severe until 2009. Dr. Suleman thinks that my veins got stretched during pregnancy and have been gradually getting worse over the years, thus causing a worsening of symptoms.

As of now my PCS symptoms include vaginal pain, abd/flank pain. I can feel blood in the vaginal area almost all the time. If I have been standing too long the blood pooling worsens, then dizziness and fog worsen as well. I think I also have varicose veins in my left leg and all over my pelvic region because I can even feel it in my behind! Pain during sex, and atrocious menstrual cycles. Heavy bleeding and cramping. During menstruation I literally lay flat for 3-4 days, to much pooling to stand. Plus all the other POTS symptoms as well.

I am for sure going to do the procedure, I'm not sure of the date yet, I go back in a few days and hopefully I will know when for sure. I hope this helps alleviate at least some of the symptoms! I encourage everyone to at least have it checked, I mean I already had the exam done and it was dismissed as nothing important! I'm really glad that I had that little piece of evidence from a few years back to help piece the puzzle together. I will definitely let everyone know if it helps or not!

Thanks Mack's mom, I feel lots better about going through with it, it doesn't sound so bad now!

BTW I haven't been a member for long, but I have been reading the forum for quite sometime, I just want everyone to know how much I appreciate every single person on this site! You helped a lonely, scared, wife and mom not feel so scared and alone anymore!

[nunntrio]

Okay, well I have POTS and I am currently untreated. My doctor wanted to wait and do more testing before we try another treatment, but he finally put two in two together! A few years ago I was diagnosed with Pelvic Congestion, none of my doc's put PCS together with POTS. Now I am kinda excited because he is pretty sure that this is what is causing my POTS, but I'm feeling a little nervous, almost like I don't want to get my hopes up that embolizing them is going to fix everything. I just don't want to be dissapointed. I have suffered a long time without proper medical attention, it took four years to finally get a POTS diagnosis. So I guess I'm just skeptical to think that it will make the POTS dissapear. I was wondering if anyone out there has had this treatment and if it significantly helped them. I have multiple large varicose veins on my uterus and those are the ones they can see on Ultrasound, they say it may be much worse. I guess I just want to know if I should have a reason to hope for some improvement.

I have both PCS and POTS. I have had mulitple venograms and one embolizations (with both alcohol and coils). I am very impressed that you have a Dr. that put these two conditions together (POTS & PCS). I have had many Dr.'s and none of them ever connected the two until I asked about it. Do you mind me asking who your Dr. is?

The venograms and embolizations are both very easy procedures to tolerate. I was basically recovered and functional within 48 hours.

I completely understand you about you being to afraid to get your hopes up. I really do not have a good answer for you regarding if I was helped. I still have POTS symptoms however, I know that I still have vein problems. I have heard that it can take multiple procedures for them to get all the veins coiled or embolized and in my case that seems to be the case.

I initially had PCS and was treated before my POTS became so bad. I had a repeat venogram done in December and it detected I still have some reflux in the veins in my left ovaries and my legs (based on ultra sound). I still struggle with the pain of PCS. The MD said that he didn't think that these remaining reflux issues were significant enough to cause all my POTS symptoms. He felt they were a contributing factor but he felt there was another mechanism contributing to my POTS. However, he is open to embolizating it if I want. I was very disappointed and I am still not sure what I am going to do. I can deal with the pain from PCS because tylenol can help. I would only do this procedure if I felt like it would help the POTS.I definitely do not want to discourage you from prusueing this. In my heart I sort of knew my vein problems were not going to be the answer because I had vein issues well before I had POTS problems. It is very frustrating because both of the conditioned are not very know in the medical community. I feel like I have been hit with a double wammy of diagnosis. Again, I do not want to discourage you everyone has a different experience.

[sue1234]

Aunie, I sent you a private message.