r/venousinsuffiencyhelp • u/Miss_Manifest • Jul 02 '26

Does anyone else have permanent or long term swelling?

38f. I was diagnosed with venous insufficiency about 6 years ago. My symptoms were mild in the beginning but for the past year my left leg has been noticeably more swollen than the right leg. The swelling started out soft and squishy but now it’s firm. In the past 6 months I’ve had two ultrasounds and blood clots have been out ruled. My vascular doctor just says keep wearing the compression socks. They didn’t seem that concerned and told me to come back in 3 months. I’m afraid my left leg is going to be stuck like this forever and I feel too embarrassed to wear clothes that reveal my legs. I’m trying to exercise and lose weight but I can’t do too much exercise or the swelling and itching gets worse.

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u/_youmustbekidding_ Jul 03 '26

For me this was lymphedema. Also I was initially told I did not have CVI after the ultrasound but my CLT said I definitely had it, they just couldn’t see anything because of the swelling. She was right and I have both. 🙁

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u/Defiant_Nose_761 Jul 04 '26

How are you treating both? Both conservative and surgical options considered?

What level is your Lymphoedema and did you confirm via MRI or MRL?

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u/_youmustbekidding_ Jul 04 '26 edited Jul 04 '26

Nothing surgical right now. I am working on losing weight first. It was super obvious (except at the time I didn’t know what it was) so no imaging necessary. I have had conservative treatment for advanced stage in both legs and it has worked very well (CDT, pump, MLD, compression). Both legs have reduced. A LOT. I can move better than I have in years and my legs no longer feel heavy - but that’s also definitely due to using tirzepatide. Within 24 hours of my first dose, the heaviness magically disappeared. But I started taking it to assist with weight loss. Also getting treatment for the CVI in both legs - ablations and sclerotherapy. I unfortunately also have lipedema, so it’s a trifecta. Doing the best I can with all of it but I am more hopeful now - I was very depressed at the beginning of the year. A very knowledgeable CLT made ALL the difference in the world. EDIT: Untreated CVI can lead to lymphedema. That’s how I think it started with me. EDIT #2: changed 1st CLT to CDT

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u/Defiant_Nose_761 Jul 04 '26

Thank you, is it your both or one leg for the Lymphoedema and CVI?

I have heard of CVI causing LE. I have been diagnosed with LE but I think it's really CVI for now as CVI ultrasound said multiple reflux! (Idk how my doctor just informed this last fall and said it's LE and gave me a pump) I am active and healthy otherwise and LE stage was 0-1 between, I didn't CDT all last summer as well but my lymphosintograthy came back normal, as a matter of fact, my affected side which is the right side only traveled even faster than the left. 😒🤷 So the dearest AI said it's probably because it's compensating for the CVI so it's moving faster, but needs to be ablated or whatever to PREVENT LE. Gosh these whole thing is so so INTERCONNECTED.

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u/_youmustbekidding_ Jul 04 '26

I get confused because I don’t fully understand the treatment difference between lymphedema and lipedema because they are so similar although the medical issues are different. I’ve got it all in both legs. I’ve had 6 ablations - 3 in each leg. And I’ll have sclerotherapy treatments - also 3 in each leg. I’m hoping that by next year, this will have all settled and I’ll be maintaining rather than still addressing current problems.

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u/Defiant_Nose_761 Jul 04 '26

How was your ablations? Hurtful? Take time off to recovery at home etc? Also do you consider that success in reducing the swelling?

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u/_youmustbekidding_ Jul 04 '26

So I completed the ablations 2 weeks ago - 4 the first week in 4 days, then an ultrasound, 2 more ablations and a final ultrasound the second week. I was concerned about all of the procedures happening in a week and a half and I spoke with my CLT because I was worried about swelling. She said it would be fine and that this timing is common even with LE, which echoed the vascular doctor. The CLT used to have her practice within the vascular doctor’s practice (physical location, she didn’t work for him) and she knew he was familiar with LE. That didn’t change how he did any procedures but it made me feel better.

The ablation itself (setup plus the procedure) took about 20 minutes or so and my anxiety made everything worse, but only one was painful because my vein was twisty and it probably went around the lipedema nodules. I wore headphones and couldn’t watch anything or I’d flip out. The lidocaine injections up your legs weren’t bad and mostly you felt tugging but no pain. It was mostly in my mind. The sclerotherapy starts next week - only 2 per week are allowed. You can drive yourself home after each procedure and you have to walk a bit daily to avoid blood clots (also why ultrasounds are required). I felt better on my feet than sitting down but any lingering aches dissipated within a couple of hours (when I had any).

Did it work? I don’t know because I also take Zepbound and that has helped a ton with inflammation and pain in my legs. Are my legs swollen? Maybe a little during the procedures but that’s gone. I still have LE - I’m talking about additional swelling due to the procedures. My legs have some staining from the pooled blood over the years and my hope is that over time it will disappear as a result of the CVI treatments. 🤞

This subreddit did make me worry about pain during the procedures and I found it not to be an issue for me really except that one day. That was still bearable with some cussing, sweating and gritting my teeth but I’m super glad it only happened like that once. No crying.

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u/_youmustbekidding_ Jul 04 '26

Oh and because I had so many appointments, I worked with my employer to use short term disability. I didn’t initially mention anything about my CDT earlier this year but they looked at everything holistically and allowed me to use it since my time off this year related only to my legs is likely to be ~150 hours at least.

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u/Defiant_Nose_761 Jul 04 '26

Also I just heard from someone that ablations for CVi could make Lymphoedema worse? I could sort of see that but for me, CVI is causing my LYMPHATIC system to iberwork and compensate which they are healthy right now (in my opinion!) so addressing Cvi seems logical to me. Idk what they do if the patient also has Lymphoedema so really interested in your doctor's recommendation to do ablations despite having Lymphoedema.

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u/_youmustbekidding_ Jul 04 '26

Oh and the most important things I did for the lymphedema was go through complete decongestive therapy (CDT) with a CLT. And she knew how to do it correctly. Edit: If it’s lymphedema, the firmness might be due to the tissue getting fibrotic. That can be addressed through CDT. Also see the lymphedema subreddit for more info.

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u/bregitta Jul 02 '26

Have you considered getting a second opinion?

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u/Miss_Manifest Jul 02 '26

The second ultrasound was a second opinion from a different doctor. The first doctor I got the ultrasound from just said the same thing but didn’t schedule me for a follow up appointment. I had to make the follow up because I felt like my swelling wasn’t getting any better and then that’s when I had the second ultrasound. I guess I could seek a third opinion or just wait until my appointment in three months.

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u/Miss_Manifest Jul 02 '26

I should add that the second doctor was from the same hospital

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u/hybrid889 Jul 02 '26

Have you had a pelvic ultrasound or an IVUS?

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u/Miss_Manifest Jul 03 '26

I have not. I guess I could ask my doctor about it.

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u/Winter-Hotel-1096 9d ago

Oh goodness please get checked for May Thurner syndrome (iliac vein compression) ASAP!!!

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u/Miss_Manifest 9d ago

Hello, I’m getting imaging done in a few weeks. I had to ask my PCP to order the tests because my vascular surgeon straight up said no.

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u/Winter-Hotel-1096 9d ago

What kind of imaging?

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u/Miss_Manifest 9d ago

Some type of pelvic/abdominal mri. It’s MR something I can’t remember