Video Q&A about Pelvic Congestion Syndrome

Hi, @techi, @largetree80, @mrsno, @xtinapear30, @caligodgirl, @kl2013, @mommymaggie, @dannyblues99, @lz5b00, @ineptninja, @d3marieh, @cluelessnj, @pamv, @sacrifice2121, @kariulrich, @michellecrcrn, @susiequ, @Gray, @ladytakash, and @darlia. I’d like to invite you to join us on Tuesday, March 27 at 5:30 p.m. CT for a video Q&A with Dr. Grace Knuttinen, interventional radiologist, and a Mayo Clinic patient about how physicians and patients can partner in their care and understanding of pelvic congestion syndrome.

You'll learn more about:
- Pelvic congestion syndrome -- why it is so underdiagnosed and misdiagnosed
- How pelvic congestion syndrome causes chronic pelvic pain and the symptoms
- The role an interventional radiologist plays in the treatment of pelvic congestion syndrome

Simply click View & Reply in the email notification to see all the details and to sign-up.Dr. Knuttinen and the patient will answer questions live. You can participate in the Video Q&A right here on Connect by returning to this page and the video will be shown at the top of the page. Feel free to post your question here before or during the presentation.

How do you get to watch the video it’s September now.
I saw tgis under the chronic pain. I have
Chronic body pain all over body. Many drs. Trying to figure out what symptoms are for chronic pelvic pain are.

Hi, @12061948, very sorry to hear about your chronic pain all over your body. I can imagine that would be very difficult.

If you go to the top of this page talking about the video q&a (please click on view & reply from the email notification) and click on the play button, the triangle, you can watch it anytime.

If you have any specific questions you'd like to discuss after watching it, please be sure to post them here or as a new discussion in the Women's Health group.

Ok I watched the video. But does this symptom effect the bowels. Slow motility
Pain in the rectum. I’ve gone to an Uro gynecologist. She’s never mentioned this syndrome. She told me it might help to have pelvic floor therapy. I was told I had knots in the vaginal area. It was very very painful therapy. What kind of
Radiologist’s I winder you should go to to look for this symptom
I did go to vein clinic was told I only had one vein in the right leg that
Was not right. Don’t know what the term is.
That is the leg that use to jump a lot at night. But it’s quit. After using magnesium.
I even went to Er. Because one day it jumped all day long. Chronic abdominal pain and leg jumping. That was several months ago.
It’s not doing it anymore. But my legs hurt tingle when I walk. Just can’t do a lot of walking
I don’t have external sight of varicose veins. Etc.
So now I guess I need to find a dr that can diagnose this and eliminate this possibility Of my leg pain. Can this cause low lumbar pain. Constipation.?? Etc.
I guess I need to watch video again.
Thank you.

Hi, @12061948 - glad you got to watch the pelvic congestion video. Hope it was helpful. Might be a condition you could run past your urogynecologist to see if she thinks this condition is a possibility for you, if you think it fits your situation.

I think members who'd mentioned slow motility like @jenblalock @tdrell @upartist @kate93, along with @jakedduck1 and @garysgirl who have talked about rectal pain in themselves or loved ones might have some insights for you on the rectal pain and slow motility.

You mentioned the pelvic floor therapy your doctor suggested was very painful. Wondering how things went after the treatment? Did you see any benefits?

No it did not help.
Dr has put me on estradiol. I’m 69.
It’s my first week.
Use twice a week.
She said may help with
My rectal pain. Etc.
Used it last night.
Suppose to take 2 months to notice results. Funny thing today I’ve had several BM I’m. Usually having issues. So not sure if it was because of the estradiol.

I meant several BM today.

@12061948 - I'm sorry to hear the pelvic floor therapy didn't help. Hoping the estradiol will be helpful with the rectal pain.

Since you mentioned estradiol, I'm also tagging a couple of other members who have mentioned it or other hormonal therapy. I'm hoping they may have some ideas for you on the rectal pain and any experiences they can share with taking hormones, like @lorena1egas @mortimer37 @seanlroop @woolfklynn @jenniferhunter.

Encouraging that you may have already seen some effects of the medication, though I know you don't know if it's from the estradiol. What type of estradiol are you taking, then (e.g., vaginal)?

I am wondering if anyone here has tried a V2 Supporter for relief from vulvovaginal varicosities. I have heard this compression garment can alleviate the burning and pressure felt with PCS

Hi @lisalucier - Is there any way to view this webinar now, or 5 years after the fact, is it considered too late and possibly outdated? >_<

I have POTS, hypermobility spectrum disorder, and chronic pelvic pain (as well as other chronic pain conditions) and recently the question has been raised about whether or not I might have pelvic congestion syndrome. I was looking to find out more about the condition, because there can be so many causes of pelvic pain, and while I have some indications of varices on imaging, I'm not sure if this is sometimes an incidental finding.

I've also read that some women with POTS, HSD/hEDS who are treated for pelvic congestion experience improvement in their POTS symptoms. Is there anyone who has experience with this? I don't have a provider well-versed in POTS and hEDS who can weigh in about if pelvic congestion could fit within the context of my issues. It's really frustrating to feel like I'm just guessing based on my best interpretation of the literature since there isn't an EDS expert I can turn to, and I haven't gotten much insight from Interventional Radiology or Women's Health, other than: "Well, you might have it, and we could do surgery."

I'm very uncomfortable considering surgery or even hormone therapy without being able to have at least a little more confidence that this could be a contributing factor to my pain, but the answer to that question may be unknowable without just going ahead with treatment...

Or is there anyone with HSD/hEDS out there who's been treated for pelvic congestion, and if so what was your experience like?

I did a not-too-deep-dive into the search to see if I could find any other conversations, but didn't come across anything, or anything more recent than this. Thanks so much.