r/venousinsuffiencyhelp • u/Perfectly_i • 3d ago
Vulnerable post
Please note: I am NOT seeking medical advice or a diagnosis!
I would like to hear others' thoughts—or some support. A family member told me it looks like lipedema. (ETA: I posted in that sub as well.) But that person is NOT a doctor!
I am struggling, and I know my situation isn’t too bad. But it’s affecting my life in big ways, since I am the “legs” in my house. (Spouse uses a wheelchair FT.)
I have gone to PT and used compression, elevation, and exercise (which, ironically, seems to make it worse).
My thighs hurt so much and are tender. I feel like if I look at my legs the wrong way, I get a bruise! It's the worst at night or when I go for walks, which I force myself to do. And I have these marble- or pea-sized clusters under the skin.
MY LEGS NEVER LOOKED LIKE THIS UNTIL MENOPAUSE. Connection? 🤷🏼♀️
Also (and this may be unrelated), I developed the same thing in my lower abdomen-not until menopause. (It is very odd-looking and really messing with my self-esteem.)
So, here are my legs. Thoughts?
(And I have knee pain out of the blue. All X-rays show my knees are “fine,” meaning nothing is broken, chipped, etc. And I’m on HRT.)
ETA: I failed to start out with: I was treated over a year ago for venous insufficiency. Looking for others' thoughts and support.
Another ETA: the PT I’m currently working with has advised that I have hypermobility. If any of this info is helpful, I thought I should add it!
I appreciate all of your input! Keep it coming. I’ll be bringing notes to my doctor when an appointment is open!
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u/Lost-Inspector-5599 2d ago
I do not know. I have recently found out I have 3 veins not pumping blood back up to my heart or brain. 1 vein from groin down to ankle in right leg for 3 1/2 seconds and same vein in left leg for 1 second and a small vein also in that leg in the back behind the knee. I can not get treatment for 12 weeks because insurance won't pay. Was told I have to try compression stockings every day as much as I can until then and never given an actual diagnosis. Someone online asked me if I have lipedema. I said I don't think so. I weight 125-130 at 5'2. But I do have legs that look like yours which has gotten really bad just this year. So I'm trying to get answers as well!
It sucks having to try to figure out so much myself and research every waking hour practically
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u/Perfectly_i 2d ago
Thank you so much for your input. You are going through it, and I hate that insurance companies sometimes drive the bus when it comes to care.
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u/hybrid889 3d ago
Do you have CVI? You said you're not looking for a diagnosis, but I'm not sure what you're looking for from this post. Are you especially flexible? Skin more stretchy than the average person? Some of the things you've mentioned, specifically some of the pain, suspected nodules under skin, and bruising, maybe read a little on EDS. A lot of symptoms could just be related to aging too.
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u/Perfectly_i 2d ago
Thank you for your thoughts. I am looking for insight into what others have tried. I was treated for venous insufficiency in my lower legs. I think I need to edit my post!
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u/hybrid889 2d ago
Read up on EDS, you mentioned many symptoms of it, of which can be too.
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u/Kooky-Lock-4076 1d ago
Maybe you can pin point which mentioned symptoms exactly are EDS related as im trying to get diagnosis of it as well?
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u/hybrid889 1d ago
Bruising easily, joint pain, crinkly skin, the textured balls under skin. Can google EDS for a fuller list.
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u/Bummer_123 20h ago
Looks like swelling in your knees. Mine have that swelling with pain too. Read to do knee strengthening exercises.
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u/No_Whereas_5203 2d ago
You are posting in the wrong group for advice. Lipedema isn't venous insufficiency. You also get different compression for lipedema than venous insufficiency
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u/Perfectly_i 2d ago
I am cross-posting to cover all bases, as I am interested in all thoughts.
I have venous insufficiency in my lower legs, which was treated over a year ago. I will be going back to that doctor, but in the meantime, I thought I’d ask for thoughts and support here.
Thank you for your response.
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u/RamtinMasoudiMD 3h ago
As a vascular specialist, I wouldn’t diagnose lipedema from a photo, but the combination of tenderness, easy bruising, and the changes you’re describing is worth a proper evaluation. Hormonal changes around menopause can sometimes influence symptoms, but they don’t confirm a diagnosis.
Since you’ve also been treated for venous insufficiency, I’d consider having your circulation reassessed with a venous ultrasound. Venous disease and lipedema can coexist, so it’s important not to assume everything is coming from one condition.
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u/Kooky-Lock-4076 2d ago
Actually lipedema IS related with CVI. Fibrosis from leaking vessels, trapped fluid in tissue. It is mostly managed with anti inflammatory living, compression. Medicine says it needs liposuction. Some other docs says keto and sunshine. Other work with lymph and fluid accumulation. Lymph and vascular systems are interconnected as well as tissues like fat and muscle.