Then there's me. I am all the subgroups you mention. I suffer from them all. I often wonder if I'm suffering the same disease as everyone else because the the pain is more, the fibrosis is more, the tightness & restriction is immobilizing, the swelling is more, yes I have veinous issues yet not the bruising, the insulin sensitivity almost seems unrealistic, joint issues are extreme yet I'm not overweight anymore tho I have been in the past, and I have none of the comorbidity diseases everyone else has besides some hypermobility but probably not bad enough to be hEDS, and yet I am only stage 2 and a year ago couldn't barely walk, stand, or use stairs. My day always ended with an hour soak in a hot tub of Epsom Salt just to be able to get up and do it again. Conservative measures have helped with diagnosis but my suffering seems so much worse than others of similar age & stage. I know why the standard of care in US was written the way it was and I fully support prevention but sometimes its frustrating because I feel like I suffer so much more than I feel other women who are stage 2 do yet we are in the same category.
Hi Melanie, and thank you for sharing all of that. It takes a lot to put into words, and I really recognise what you’re pointing to: being labelled “stage 2” can say very little about how much someone is actually suffering.
My own lipedema has also come in phases over time. Because I’ve known I have lipedema since 2012 (stage 1 back then), I’ve been able to follow the changes closely. There have been periods with intense pain, significant swelling, and a lot of fibrosis with large nodules — and other periods where symptoms were more manageable.
And even though lipedema is often described as symmetrical, mine isn’t. It has always been a bit worse on my right side. That asymmetry is actually part of why I was diagnosed so early: my GP wanted my right calf checked for a possible blood clot, so I was sent to a vascular department — and that workup led to the lipedema diagnosis.
What you wrote is exactly why I believe subgrouping matters. “Stage” alone doesn’t capture pain, fluid, fibrosis, venous issues, mobility limits, or how fast things can shift. Thank you again for adding your voice to this conversation 😍💛
thank you both for this exchange — it demonstrates exactly what i’ve been trying to document about lipoedema’s resistance to standardisation.
@melanie, what you’re describing is precisely the problem with current diagnostic frameworks. you’re experiencing severe symptoms that don’t correlate with your assigned stage, which exposes how inadequate the staging system is. the fact that you’re “only stage 2” but couldn’t walk a year ago reveals that stage classifications measure something, but not necessarily suffering or functional impact.
and @carina, your point about phases resonates deeply. my experience has also been cyclical rather than linear — periods of relative manageability followed by sudden deterioration that doesn’t match the expected progression pattern. the medical model assumes steady, predictable advancement through stages, but that’s not how many of us actually experience the condition.
this articulates something i’ve been trying to document — the fundamental disconnect between how lipoedema actually presents and how medical systems attempt to categorise it.
what strikes me most is the recognition that lipoedema might not be a singular disease entity at all. this matches what i’ve observed: the diagnostic criteria feel simultaneously too broad (catching people with very different experiences) and too narrow (missing presentations that don’t fit the textbook description).
your point about moving away from the lymphatic system hypothesis toward understanding this as potentially vascular or metabolic feels crucial.
it explains why so many treatments fail — they’re addressing the wrong underlying mechanism. my body has been telling me this for years through its refusal to respond to conventional approaches.
this is exactly why patient documentation matters. we’re living inside these diagnostic failures, experiencing directly how current frameworks don’t work. the medical establishment needs to stop forcing our experiences into inadequate categories and start building understanding from what we’re actually reporting.
Then there's me. I am all the subgroups you mention. I suffer from them all. I often wonder if I'm suffering the same disease as everyone else because the the pain is more, the fibrosis is more, the tightness & restriction is immobilizing, the swelling is more, yes I have veinous issues yet not the bruising, the insulin sensitivity almost seems unrealistic, joint issues are extreme yet I'm not overweight anymore tho I have been in the past, and I have none of the comorbidity diseases everyone else has besides some hypermobility but probably not bad enough to be hEDS, and yet I am only stage 2 and a year ago couldn't barely walk, stand, or use stairs. My day always ended with an hour soak in a hot tub of Epsom Salt just to be able to get up and do it again. Conservative measures have helped with diagnosis but my suffering seems so much worse than others of similar age & stage. I know why the standard of care in US was written the way it was and I fully support prevention but sometimes its frustrating because I feel like I suffer so much more than I feel other women who are stage 2 do yet we are in the same category.
Hi Melanie, and thank you for sharing all of that. It takes a lot to put into words, and I really recognise what you’re pointing to: being labelled “stage 2” can say very little about how much someone is actually suffering.
My own lipedema has also come in phases over time. Because I’ve known I have lipedema since 2012 (stage 1 back then), I’ve been able to follow the changes closely. There have been periods with intense pain, significant swelling, and a lot of fibrosis with large nodules — and other periods where symptoms were more manageable.
And even though lipedema is often described as symmetrical, mine isn’t. It has always been a bit worse on my right side. That asymmetry is actually part of why I was diagnosed so early: my GP wanted my right calf checked for a possible blood clot, so I was sent to a vascular department — and that workup led to the lipedema diagnosis.
What you wrote is exactly why I believe subgrouping matters. “Stage” alone doesn’t capture pain, fluid, fibrosis, venous issues, mobility limits, or how fast things can shift. Thank you again for adding your voice to this conversation 😍💛
thank you both for this exchange — it demonstrates exactly what i’ve been trying to document about lipoedema’s resistance to standardisation.
@melanie, what you’re describing is precisely the problem with current diagnostic frameworks. you’re experiencing severe symptoms that don’t correlate with your assigned stage, which exposes how inadequate the staging system is. the fact that you’re “only stage 2” but couldn’t walk a year ago reveals that stage classifications measure something, but not necessarily suffering or functional impact.
and @carina, your point about phases resonates deeply. my experience has also been cyclical rather than linear — periods of relative manageability followed by sudden deterioration that doesn’t match the expected progression pattern. the medical model assumes steady, predictable advancement through stages, but that’s not how many of us actually experience the condition.
i experience all these too
this articulates something i’ve been trying to document — the fundamental disconnect between how lipoedema actually presents and how medical systems attempt to categorise it.
what strikes me most is the recognition that lipoedema might not be a singular disease entity at all. this matches what i’ve observed: the diagnostic criteria feel simultaneously too broad (catching people with very different experiences) and too narrow (missing presentations that don’t fit the textbook description).
your point about moving away from the lymphatic system hypothesis toward understanding this as potentially vascular or metabolic feels crucial.
it explains why so many treatments fail — they’re addressing the wrong underlying mechanism. my body has been telling me this for years through its refusal to respond to conventional approaches.
this is exactly why patient documentation matters. we’re living inside these diagnostic failures, experiencing directly how current frameworks don’t work. the medical establishment needs to stop forcing our experiences into inadequate categories and start building understanding from what we’re actually reporting.