# Medical Incompetence



## bigmac (Aug 17, 2011)

Sometimes I'm really amazed at the incompetence of the medical profession. On Monday my wife was diagnosed with Lipedema (not to be confused with the more widely know and diagnosed Lymphedema). Lipedema affects between 6 and 12 million Americans (almost all are women) making it much more common than such high profile diseases as AIDS and breast cancer. The disease has also been known to medical science for over 70 years.

_From Wikipedia: Lipedema is a disorder of adipose tissue distinguished by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the seriously underweight to the morbidly obese; 4) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern  bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 5) unlike the normal fat of obesity, *lipedemic fat cannot be lost through diet and exercise. Surgery is highly controversial, and in many cases, can make the condition worse.*
Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.
Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. Even if the number were only 5%, that would mean more than 6 million women in the United States alone._

My wife has a textbook case: she was a normal size preteen; she started to gain weight in the characteristic pattern after puberty; she has the characteristic cankles but thin feet; WLS almost killed her but didn't decrease the size of the lower half of her body. Despite exhibiting such textbook symptoms no doctor (until Monday) diagnosed her -- not even the bariatric hotshots at UCLA. 

Because of the medical professions failure to make what in retrospect was an incredibly easy diagnosis my wife was subjected to years of abuse by both family and medical practitioners:

-- Since the lower body fat of Lipodema is not the result of over eating her mother had no reason to tell her to "stop crying its your own fault no one asked you to the prom."

-- Likewise the torture of three months in an inpatient locked down eating disorder clinic was all for not.

-- Her WLS surgery was not only botched but it was guaranteed to fail even it the surgeon had been competent.

*SO RIGHT NOW I"M TOTALLY PISSED AT THE MEDICAL ESTABLISHMENT FOR SUBJECTING THE PERSON I LOVE THE MOST TO DECADES OF SUFFERING.*

http://www.bigfatlegs.com/

http://www.bigfatlegs.com/Facts-N-Symptoms.php

http://fatdisorders.org/what-are-fat-disorders/lipedema/


----------



## CarlaSixx (Aug 17, 2011)

My doctor had mentioned this to my mother a long time ago. I was actually just hitting puberty when he mentioned this. So he did know. He said it was "completely genetic" and kept reassuring us that we had nothing to be ashamed of for our fat because he's sure as hell that it'S genetic. After all, he's the doctor for pretty much everyone in my family, so he knows them well. 

I'm not sure this is what I have, but I think at least some of my family members do. I have no "clear and distinct" weight distribution, so...

It does suck that basically nothing can be done about it, though.


----------



## Webmaster (Aug 18, 2011)

I am not surprised, bigmac. It has always seemed to me that most physicians lose about 50 IQ points the moment they find themselves in the presence of a fat person. Any prior ability to analyze and diagnose intelligently vanishes, they start wagging fingers, and then sternly urge diets.

Maybe the giant deductible and endless list of not-included items and tests in my thousand bucks a month Kaiser health insurance that makes my wife and I shy away from going to Kaiser for things we probably should go to them is a good thing after all. This way at least they can't misdiagnose and make things worse.

Anyway, with the diagnosis, at least you and your wife now know what you're up against. That's something.


----------



## Miss Vickie (Aug 18, 2011)

Mac, thank you so much for sharing this information. I'm so sorry about the treatment your wife has received. I've never heard of lipedema, though obviously I know about lymphedema from being here and my own study. Sadly, these diseases are seldom mentioned, if at all, in at least the program I'm in, although lymphedema after cancer surgery is mentioned briefly. I'm only halfway through so maybe this year it'll be a subject for a lecture but so far (and I've taken pathophysiology), nothing. I sometimes care for patients with what I suspect is undiagnosed lymphedema and often am the one to point it out to the doctors who I work with. They just don't know about it.

I'm trying, from within the system, to educate the providers I work with, and it's important for us as patients to educate our providers as well. Medical school, while trying to be comprehensive, can't cover every illness. I don't think they mean to be fat phobic but unless you have one of those doctors who looks for "zebras", the rest will see "horses" and miss the more nuanced diagnoses. I was lucky to work with one doctor, briefly, who saw zebras. The other nurses hated him because he created extra work for them but he was the guy who found an early pulmonary embolus in a patient with shortness of breath that everyone else was calling an asthma exacerbation.

I have personal experience with this as well. My Sarcoidosis was misdiagnosed by an ER doc, a DO, and a pulmonologist as, in turn, lymphoma, pneumonia, and (you'll love this) enlarged lymph nodes because I was fat. This last one, by the way, was from a fat pulmonologist who told me fat people have enlarged lymph nodes and not to worry, despite blood work that pointed pretty directly to Sarcoidosis. I went years without treatment which no doubt caused permanent lung damage. This is common with chronic illnesses like RA, Lupus, Sarcoid and Fibromyalgia. Sad to say, but true.

I encourage each of you to be your own advocate. Research what you can, ask your provider questions, and if something doesn't feel right, question it. If your provider doesn't welcome this, find another one. There is no way that we can know everything about every disease and new studies come to light each and every day which clarify differences between syndromes. Add to that the scheduling dilemmas facing most providers where they are given 15 minutes for a visit. If they seem rushed, it's because they are, and if they work in a managed clinic it's because that's how the place is set up and they have no choice. But that doesn't mean that you can't ask for a longer visit. 

My new provider, the same nurse practitioner who taught my patho class in my undergraduate studies, spent almost two HOURS with me during my first visit taking my history (personally), taking my vital signs (herself), and doing a full head to toe exam. There are providers out there, but sometimes you have to seek out nurse practitioners, not doctors. The nursing training we have lends itself to longer visits with more education, and we can provide the same kind of care that a family practice doctor can provide. I think they are an underutilized resource but it's something to think about.

In the meantime, Mac, I'm sorry about your wife's diagnosis and I hope she is able to get good treatment to minimize worsening of her symptoms. Does the same wrapping that works for lymphedema work for lipedema as well? And do you have plans to either discuss this with her previous providers, to let them know how righteously angry you are about the misdiagnosis? 

Again, thank you for sharing this important information. I know that it will benefit many people.


----------



## bigmac (Aug 18, 2011)

Miss Vickie said:


> Mac, thank you so much for sharing this information. I'm so sorry about the treatment your wife has received. *I've never heard of lipedema*, ...



I'd never even heard of Lipedema before Monday either. *But medical science has know about this for 70 years!!! *

So basically its gotten zero publicity and of course it follows that its gotten pretty much zero research dollars. This despite the fact that far more people (most undiagnosed) have Lipedema than have AIDS or breast cancer. Kind of shows you how important fat women are to many people.

As a result of this lack of publicity (I'm not going to say lack of knowledge because the information to diagnose this is out there) everyday -- today -- tomorrow and the next ... doctors are going to recommend WLS that is contra-indicated for women with Lipodema. Women with Lipedema will start diets that are doomed to fail. Women with Lipedema will spend useless hours on treadmills and elliptical machines trying to make their legs thin. Girls whose legs ballooned with puberty will continue to be taunted by classmates and belittled by family members for a condition over which they have no control (as a father of two young daughters this last one really scares me -- luckily my two oldest seem to have dodged the bullet). 

I'm still trying to get my head around how the entire medical field can advocate treatments that they should know are going to be ineffective (and are likely also dangerous) for a very substantial portion of their female patients.


----------



## Fat Brian (Aug 18, 2011)

Because nothing is worse than being fat, a fat person could go to the hospital with gunshot wounds or missing a limb and at least one of the doctors would say something about their weight. Its as much bigotry as lack of awareness, fat people have become so stigmatized and being fat has become so feared and scorned that any means necessary are called for to end the plague.

People don't look for any other causes because we've all been told what "causes" being fat thousands of times, fat people eat too much junk food! When you think you know all the answers you never look for something else. Mac, I've been through some of the same things with Crystal and I know where you are coming from. To see your wife suffering because some labcoat wearing jackass won't do his job is one of the most infuriating things I've ever experienced. At least you know now, but I know thats very small consolation indeed.


----------



## NurseVicki (Aug 18, 2011)

bigmac said:


> Sometimes I'm really amazed at the incompetence of the medical profession. On Monday my wife was diagnosed with Lipedema (not to be confused with the more widely know and diagnosed Lymphedema). Lipedema affects between 6 and 12 million Americans (almost all are women) making it much more common than such high profile diseases as AIDS and breast cancer. The disease has also been known to medical science for over 70 years.
> 
> _From Wikipedia: Lipedema is a disorder of adipose tissue distinguished by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the seriously underweight to the morbidly obese; 4) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern  bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 5) unlike the normal fat of obesity, *lipedemic fat cannot be lost through diet and exercise. Surgery is highly controversial, and in many cases, can make the condition worse.*
> Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.
> ...



I am sorry For your wifes Pain but I thank you for this information I have a friend who i think this may be what is wrong with her as well I look at my legs and wonder my self with the pain I have but my legs aren't big. So I will keep looking for what cause my pain! I agree Medical professionals seem to think eating less will cure every thing, I try to lose but have a lot of pain and I fight every day to move more then I consume! some times my back hips and legs hurt t much to do what i want ! It is depressing to only hear you need to lose weight and you do so much better from every one ! Don't you think I know that I want to scream!


----------



## butch (Aug 19, 2011)

bigmac said:


> I'd never even heard of Lipedema before Monday either. *But medical science has know about this for 70 years!!! *
> 
> So basically its gotten zero publicity and of course it follows that its gotten pretty much zero research dollars. This despite the fact that far more people (most undiagnosed) have Lipedema than have AIDS or breast cancer. Kind of shows you how important fat women are to many people.
> 
> ...



I'm so sorry to hear that your wife has had to suffer in this way, and wish her the best. I get that you're angry, and I would be, too, but some of the things you say in this post rub me the wrong way.

Since you're hurt and angry right now, I'll leave it at that. However, I will point out that all fat people, not just women, or women with this condition, are often pushed into treatments and surgeries that are ineffective and dangerous, and that is worth more outrage than we often see on the behalf of all fat people.


----------



## Lamia (Aug 19, 2011)

I would say that the main reason medical doctors aren't able to properly diagnose is that until recent history there haven't been as many people our size around. It's going to take medical science a while to catch up and learn how to treat larger people properly. Even for something as simple as blood pressure. 

I have lone atrial fibrillation and when I went to see this cardiologist after one of my attacks he asked me if how I was doing and I said I was fine except my arm hurt because the bp cuff was so small. He left the room and brought the nurse in with a huge cuff and he chastised her in front of me which I didn't think was too professional, but he said "You can't use a small cuff on large patient because you get a false reading of high blood pressure". 

So he took my BP with the large cuff and my bp was normal. It showed high with the other cuff. 

This makes me wonder how many big people out there are being treated for hypertension when they don't actually have it.

Here is some info about it.

http://www.plus-size-pregnancy.org/lgbpcuffs.htm#Why a Large Blood Pressure Cuff Is Needed


----------



## Fat Brian (Aug 19, 2011)

This happens to Crystal and I all the time. Also, one of the offices we go to on occasions uses and automated bp machine that only has one cuff size, needless to say they always remark on our high bp there. Another issue for her is that one component of her fibromyalgia is that her body reacts too slowly to its bp needs. When she starts an activity where she needs more pressure it takes a while to get it and when shes resting it takes a few minutes to go back to normal. We've tried to explain this to her gp but apparently this concept is too complex for a doctor to understand, on a recent appointment the nurse took her bp as they always do and we explained it will be somewhat high due to this condition. When the gp saw her bp we went through the whole thing again he commented on how he'd never heard of that before and proceeded to berate her about her bp while he got a cuff and took it himself, and it was normal :doh:.


----------



## BigBeautifulMe (Aug 19, 2011)

I was diagnosed with lipedema a few years ago, bigmac, so I understand what you and your wife are going through right now. I'm so sorry.


----------



## Miss Vickie (Aug 20, 2011)

There are just so many complex reasons why doctors miss things, focus on the wrong stuff, and misdiagnose disease. Too many specialists, too little time with patients, too much focus on medications and less on educating patients. I mean, the list goes on. And then there's the bias -- against fat, against race, against social situations. I admit I work with people like this and just cringe (and speak up) at the things they say.

I know it doesn't make it any better when it's you (and it's been me, even recently) but I think it is why we have to educate ourselves and our providers, about our symptoms, about our bodies, and what we suspect is going on. Since we live in our skin, we are the expert. And if you see a provider who gives you attitude, then they just lost a patient. 

I wish I could think of some way to magically fix our health care system and make our doctors smarter, more schooled in nutrition (my WLS doc's answer to vitamins post surgery? Flintstones chewables. I mean, REALLY??? Seriously????), with more time and patience. But it's such a complex problem that the thing I see that we have control over this point is ourselves because overhauling the medical system, while necessary, is so not going to happen in at least my lifetime. Maybe you young'uns will get lucky. But by being empowered and smart and holding our heads up high, knowing we can change providers if we're not happy, we put it out there that we won't take their crap. Demanding good service is a good start to GETTING good service. 

I can't answer to the doctors who misdiagnosed your loved ones. I can only answer for the patients I've cared for in the past, the ones I will care for tomorrow, and the ones who I'll care for in the near and distant future. But I can promise you that many of us are out there doing our very best, often in very difficult circumstances. Just try to keep that in mind when you're judging us. And I'll do my best to be open minded, caring and as smart as I can possibly be with all the people I'll take care of for as long as I am privileged to do so. And I love it when my patients come to me with thoughts and ideas, questions and concerns. Lists are even better! So bring it!


----------



## joswitch (Aug 20, 2011)

@Mod - as this is a condition which has received waaaaay inadaequate publicity, any chance of making this thread a "sticky"?? And maybe modifying the title to put "Lipedema" in it?


----------



## bigmac (Aug 20, 2011)

joswitch said:


> @Mod - as this is a condition which has received waaaaay inadaequate publicity, any chance of making this thread a "sticky"?? And maybe modifying the title to put "Lipedema" in it?



Good idea -- I'll second that.


----------



## bigmac (Aug 21, 2011)

butch said:


> I'm so sorry to hear that your wife has had to suffer in this way, and wish her the best. I get that you're angry, and I would be, too, but some of the things you say in this post rub me the wrong way.
> 
> Since you're hurt and angry right now, I'll leave it at that. However, I will point out that all fat people, not just women, or women with this condition, are often pushed into treatments and surgeries that are ineffective and dangerous, and that is worth more outrage than we often see on the behalf of all fat people.



You seem to think that publicizing the Lipedema issue will somehow undermine the solidarity of fat people. Or somehow minimize the issues of fat people how don't have Lipedema. However, the SA community has long know that fat people are fat for many different reasons -- or no reason other than that's the way they were supposed to be. Despite the multiple causations of fat the medical community has generally treated all fat people the same. I've always thought this was lazy approach -- but now we can see that it was outright malpractice. 

Getting the medical community to realize that not all fat people are fat for the same reasons is an essential step in in the struggle to obtain decent healthcare. When the only model of obesity the medical community has is the calorie in calorie out model millions of obese people with more complex metabolic and/or hormonal issues end up with ineffective treatment. 

Regarding WLS -- I generally think its a bad idea but can see how it can be a valid option in some cases. However, WLS is a great example of how the medical communities simplistic ideas regarding obesity hurt patient. A healthy patient without any hormonal or metabolic issues is likely to have a much more successful outcome (assuming weight loss equals success) than someone with Lipodema, Madelung's disease or other such issues. At the very least WLS patients need to get warnings (like the drug adds on TV); some thing like this:

*WLS may not be contraindicated if you suffer from a hormonal or metabolic syndrome such has Lipedema. Ask your doctor about Lipodema and other hormonal and metabolic syndromes when considering WLS.*

A "normal" person subjects him/herself to the risks of WLS in return for a good chance of substantial weight loss. A person with Lipodema is subjecting themselves to the same risks for nothing. This needs to be publicized.

I really don't see how making both doctors and patients aware of the fact that not all fat people are the same is a bad thing.


----------



## butch (Aug 21, 2011)

bigmac said:


> You seem to think that publicizing the Lipedema issue will somehow undermine the solidarity of fat people. Or somehow minimize the issues of fat people how don't have Lipedema. However, the SA community has long know that fat people are fat for many different reasons -- or no reason other than that's the way they were supposed to be. Despite the multiple causations of fat the medical community has generally treated all fat people the same. I've always thought this was lazy approach -- but now we can see that it was outright malpractice.
> 
> Getting the medical community to realize that not all fat people are fat for the same reasons is an essential step in in the struggle to obtain decent healthcare. When the only model of obesity the medical community has is the calorie in calorie out model millions of obese people with more complex metabolic and/or hormonal issues end up with ineffective treatment.
> 
> ...



That actually wasn't what really bugged me about your post, but it seemed to be something worth pointing out that wouldn't create needless drama in the thread. I wasn't even thinking what you've laid out, but it is food for thought.


----------



## musicman (Aug 21, 2011)

My wife was diagnosed with lymphedema in both legs 10 years ago, or rather she diagnosed herself, because the doctors had no clue. To them, she was just fat. Once she convinced her doctor that this is what she had (because lymph fluid was leaking through her skin), she went through Manual Lymph Drainage (a type of massage accompanied by tightly wrapping the legs to drain the excess fluid), and now has to wear heavy compression stockings every day to keep the fluid from accumulating again.

But she also has the exact visual appearance of lipedema, i.e. very pear-shaped with huge hips and legs but small feet. Hence, I have read a lot over the years about both lymphedema and lipedema, and I don't think that many doctors understand either one. According to most references, lipedema is supposed to be accompanied by severe pain and hypersensitivity in the fat, all over the affected area (i.e. all over the hips and legs), but my wife does not have that. Other very pear-shaped women I have met do not have this type of pain either. They merely have a bottom-heavy distribution of fat.

I agree with BigMac that WLS for a bottom-heavy woman will not change her pear shape, whether we call it lipedema or not. I've never been to med school, and that's obvious even to me. If any doctor truly believes that, he's an idiot. And telling that to a woman is medical malpractice, IMHO.

I think I would go further and question a diagnosis of lipedema in many cases as well, unless the fat distribution is also accompanied by distributed pain. I do NOT want to see medical "science" start "diagnosing" a form of fat distribution as a disease or disorder, especially since they admit that lipedema has no treatment or cure. (To me, this is similar to the battle we are currently losing over whether simple obesity, by itself, should be classified as a "disease".)

Bottom line: Lymphedema is a real treatable medical condition. Lipedema, on the other hand, may just be a form of fat distribution.


----------



## petunia805 (Aug 22, 2011)

musicman said:


> My wife was diagnosed with lymphedema in both legs 10 years ago, or rather she diagnosed herself, because the doctors had no clue. To them, she was just fat. Once she convinced her doctor that this is what she had (because lymph fluid was leaking through her skin), she went through Manual Lymph Drainage (a type of massage accompanied by tightly wrapping the legs to drain the excess fluid), and now has to wear heavy compression stockings every day to keep the fluid from accumulating again.
> 
> But she also has the exact visual appearance of lipedema, i.e. very pear-shaped with huge hips and legs but small feet. Hence, I have read a lot over the years about both lymphedema and lipedema, and I don't think that many doctors understand either one. According to most references, lipedema is supposed to be accompanied by severe pain and hypersensitivity in the fat, all over the affected area (i.e. all over the hips and legs), but my wife does not have that. Other very pear-shaped women I have met do not have this type of pain either. They merely have a bottom-heavy distribution of fat.
> 
> ...




What? Wtf? Lipedema is every bit as real as lymphedema. The fat distribution is just ONE symptom, and OBVIOUSLY not every pear shaped woman has lipedema. What you've just done here is discount the suffering of every woman that does. The awful truth that there is no treatment and no cure doesn't diminish the reality of the disease either. 

The fact is that it IS painful. And you know what? It's difficult enough to explain to someone outside the SA community that the pain is IN my fat and not in my joints, or the result of carrying around so much extra weight. Who new I'd have to be trying to convince someone IN the SA community that what I feel is very real... I wonder if this is how your wife felt when she was trying to convince her doctors that she had Lymphedema.


----------



## musicman (Aug 22, 2011)

petunia805 said:


> What? Wtf? Lipedema is every bit as real as lymphedema. The fat distribution is just ONE symptom, and OBVIOUSLY not every pear shaped woman has lipedema. What you've just done here is discount the suffering of every woman that does. The awful truth that there is no treatment and no cure doesn't diminish the reality of the disease either.
> 
> The fact is that it IS painful. And you know what? It's difficult enough to explain to someone outside the SA community that the pain is IN my fat and not in my joints, or the result of carrying around so much extra weight. Who new I'd have to be trying to convince someone IN the SA community that what I feel is very real... I wonder if this is how your wife felt when she was trying to convince her doctors that she had Lymphedema.



Well, thank you for enlightening me. I was obviously wrong. Nonetheless, I look forward to future attacks from you and your husband, who obviously are the only intelligent people that ever post here. All others are not only wrong, but clearly enemies of the fat community, as you so cleverly imply.


----------



## petunia805 (Aug 22, 2011)

musicman said:


> Well, thank you for enlightening me. I was obviously wrong. Nonetheless, I look forward to future attacks from you and your husband, who obviously are the only intelligent people that ever post here. All others are not only wrong, but clearly enemies of the fat community, as you so cleverly imply.




Attacks? I don't understand. But let me review.....

1. I was diagnoses with a condition after many MANY years of being in tremendous pain and having no help. 
2. My husband was angry that this particular condition wasn't diagnosed sooner and in fact gets NO attention whatsoever from the medical community.
3. You posted a comment questioning whether my condition is even real, and also mentioned that your wife had some challenges trying to educate her own medical providers
4. I defended the "realness" the condition and pointed out that you had just made me feel the same way that she had likely felt when pursuing help from her own doctors.

Please tell me, where is the attack from me or from Bigmac for that matter??


----------



## Diana_Prince245 (Aug 22, 2011)

Health conditions that affect mostly or only women have been ignored for years. The medical establishment, ie mostly male doctors, insisted fibromyalgia was merely hysteria on the part of women. We failed to study heart disease in women until the 1980s, because the medical establishment couldn't fathom that it would manifest differently than in men.

Discounting lipedemia because "it might be just normal fat distribution" is to discount the experience of tens of thousands of women.


----------



## joswitch (Aug 22, 2011)

Diana_Prince245 said:


> Health conditions that affect mostly or only women have been ignored for years.



That's a sweeping generality that is not borne out by the facts.

Two counter examples: 
- Breast cancer (which affects mostly women) receives about twice the funding as prostate cancer (which affects definitely mostly, and possibly only men). Most developed nations have a mass screening program for breast cancer. Not so prostate cancer.

- Further, modern medicine has radically reduced the fatality rate in childbirth in developed countries.




> *snip*
> 
> Discounting lipedemia because "it might be just normal fat distribution" is to discount the experience of tens of thousands of women.



I just want to sum up some key points mentioned in the thread so far, that I'm concerned might be lost in people's arguing with one another. We've got three things that externally look the same, but are physiologically different:

1) *Lymphedema* - accumulation of lymph fluid in the legs and lower body. Cuts may leak clear, lymph *fluid*. Treatable with massage & compression bandages. 

2) *Lipedema / Lipodema* - accumulation of fat in the legs and lower body, accompanied by *pain* in the adipose (fat) tissue itself, (as distinct from pain in the joints). Not treatable by WLS.

3) *Pear-shaped body fat distribution*. Absent fluid accumulation / pain in the adipose tissue itself, this is a natural, healthy body shape in many women, (and possibly? for some men). People carrying more weight in their legs, hips and butt may be less likely to suffer heart disease than people carrying weight around their midsection.


So, musicman's observation that *not all* pear-shaped women suffer from 1) and 2) is correct, (but that's pretty much common knowledge, yes?).

Equally, Petunia's suffering lipedema and the symptoms and diagnosis of lipedema not being common knowledge = also true.

@Petunia - I hope you can find an effective treatment for your pain.


----------



## Diana_Prince245 (Aug 22, 2011)

Take your woman-hating shit elsewhere, dude. I know more about how women are treated by the medical establishment then you can ever dream of knowing. 

The only reason breast cancer, which isn't even the biggest killer of women, gets the attention it does is because boobs are involved and boobs are way sexier than hearts.


----------



## LillyBBBW (Aug 22, 2011)

I don't have lipodema but I was given the fat girl run around for another disorder that nearly ended my life. This disorder has yet to be named but I'm being treated for it just the same and could die if left untreated. 20 years later with it and still no one has even bothered to go any further than to just hand me some pills and wish me the best of luck in whatever is left of my life. I remember how relieved I was to find out I had an actual disorder. It was like I'd reached home base and can now be treated for something. Then it occured to me how fucked up that was.

Poor treatment at the hands of the medical establishment is bad for everybody. It's never okay, never justified, never a good thing. It's not proven to do anything but prolong suffering and in some cases it kills people. Doctors continually practice this with immunity as long as we keep nodding along like maybe they might be on to something with this bullshit artistry. When I think of all the people who are dead now because they had an issue but assumptions were made or they wouldn't go to get checked out because they were AFRAID of the DOCTOR, it really makes me angry.


----------



## joswitch (Aug 22, 2011)

Diana_Prince245 said:


> Take your woman-hating shit elsewhere, dude. I know more about how women are treated by the medical establishment then you can ever dream of knowing.
> 
> The only reason breast cancer, which isn't even the biggest killer of women, gets the attention it does is because boobs are involved and boobs are way sexier than hearts.



Facts don't "hate". Here's the very first, serious source that came up on google - a study in Michigan:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361028/

"_Principal Findings
Per capita lifetime expenditure is $316,600, a third higher for females ($361,200) than males ($268,700)._"

^That's a fact. Maybe you feel that it's not enough. Maybe you feel that women deserve even more. 

BUT - Your original assertion is disproven, because - IF women's health problems were in fact ignored, then we would see LESS money spent on women (than men), not MORE.

Inconvenient for you, I'm sure, but that's reality.

Congrats, on going straight for the shaming tactic - when you knew you couldn't support your assertion with evidence. You'd make a terrific politician, I'm sure.


*
Now, let's continue with a thread that's raising awareness of disorder(s) that are inadaequately diagnosed and treated.*


----------



## bigmac (Aug 22, 2011)

Miss Vickie said:


> There are just so many complex reasons why doctors miss things, focus on the wrong stuff, and misdiagnose disease. Too many specialists, too little time with patients, too much focus on medications and less on educating patients. I mean, the list goes on. ...



I don't really blame individual doctors. If a disease like Lipodema is not taught in medical school you can't really expect primary care physicians to diagnose it. However, I would have hoped that a greater percentage of these smart people would have questioned the simplicity of the standard obesity model (calories in // calories out).

I'm not so forgiving with regard to the doctors at the UCLA Bariatric Clinic. These doctors are supposed to be obesity experts. Given what I've read its become apparent to me that one can hardly be considered an obesity expert without knowledge of Lipodema. It seems clear that these weight loss doctors had medical, ethical, and legal obligations to: (1) examine and evaluate all their female WLS for Lipodema, and; (2) counsel patients with Lipodema regarding the limits of WLS (i.e. that it's not going to get rid of their lower body weight).

Regarding the big picture: it becomes more clear with every revelation that obesity has many causes. It follows that lining patients up for a standard assembly line cure is malpractice plain and simple.


----------



## musicman (Aug 22, 2011)

petunia805 said:


> Please tell me, where is the attack from me



If you re-read my original post, you'll see that I was not accusing YOU of faking anything. My post was not directed at you or anyone else, and I don't understand why you personalized it. I was, in fact, agreeing with your husband on a very significant point, and before you posted, I was considering another post in which I was going to express my whole-hearted agreement with him on the larger issue of medical incompetence. You, on the other hand, presumed to read my mind and accused me of discounting the suffering of a large number of women. I consider that an unwarranted attack, especially in the context of the anger you expressed toward me in your post, and your crack about the SA movement.

As I said, I appreciate your enlightening me about the fact that you have pain in the fat of your lower extremities. That was not clear from BigMac's posts, and I was not personally familiar with cases like this. Re-read my 2nd post and you'll find the words "I was obviously wrong." You probably don't believe me, but I am genuinely sorry you suffer from this condition, and that you, like many others, had to go through WLS and everything else that BigMac described, before you were properly diagnosed. I do not know a single fat person who has not been mistreated and misdiagnosed by doctors, and that is a fight we should all be involved in.

I hope that more information and proper diagnosis of lipedema will prevent doctors from recommending useless treatments like WLS, and I hope that a cure for the pain is found.


----------



## Miss Vickie (Aug 23, 2011)

joswitch said:


> Facts don't "hate". Here's the very first, serious source that came up on google - a study in Michigan:
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361028/
> 
> "_Principal Findings
> ...



Just a couple o' things before we move on. First of all, I thought she was talking about research, not expenditure on health care. Secondly, women have babies, and obstetrical care, particularly as it's practiced in the US, is very spendy. I wonder how those numbers would look if they removed obstetrics (and birth control which is also expensive, and also largely the responsibility of women) from the picture. And you're right about breast cancer research. There is a LOT of funding toward treatment and cure, but I think it came about as a response to the dearth of research done on women. Most research prior to that time had been done on men and I think uppity women (and their lovely male doctors and partners) started rattling cages, which has stimulated a lot of research in "women's issues". 

I'd love it if there were more research about my diseases: Sarcoidosis and Pseudotumor cerebri, but they're not exotic enough and the only people who have suffered from Sarcoid who are public figures are non-famous black athletes and Bernie Mac. So pretty much, every time I ask my doctors anything, I'm told "We just don't know." Niiiiiiice. So I could lose my vision, I suffer daily headaches, and have permanent lung damage from the Sarcoidosis and they "just don't know". SUPER!



bigmac said:


> I don't really blame individual doctors. If a disease like Lipodema is not taught in medical school you can't really expect primary care physicians to diagnose it. However, I would have hoped that a greater percentage of these smart people would have questioned the simplicity of the standard obesity model (calories in // calories out).



I sometimes wonder about some of the doctors out there who care for patients or give advice on TV shows. I was cleaning up a patient's room while she was in the OR and the TV was on. It was one of those TV Dr show and they were talking about obesity and how bad it is. (Stop me if you've heard this before). One of the doctors said, "She was quite literally a ticking time bomb." Now, call me a nerd, but if this woman were ACTUALLY, LITERALLY a 'ticking time bomb' she would have had a countdown clock, wires coming out of her, and maybe some explosives attached to her. But she was "just" a moderately fat woman being routinely shamed on television -- same shit, different day. So these guys don't even understand what the word "literally" literally means. It makes me wonder about their ability to digest research.



> I'm not so forgiving with regard to the doctors at the UCLA Bariatric Clinic. These doctors are supposed to be obesity experts. Given what I've read its become apparent to me that one can hardly be considered an obesity expert without knowledge of Lipodema. It seems clear that these weight loss doctors had medical, ethical, and legal obligations to: (1) examine and evaluate all their female WLS for Lipodema, and; (2) counsel patients with Lipodema regarding the limits of WLS (i.e. that it's not going to get rid of their lower body weight).
> 
> Regarding the big picture: it becomes more clear with every revelation that obesity has many causes. It follows that lining patients up for a standard assembly line cure is malpractice plain and simple.



I agree with all of what you said. A so called bariatric specialist should understand not just how to surgically treat obesity but also have a good understanding about the condition he or she is treating. Obviously if they can't see the difference between lipedema and being a pear, they're missing something huge. 

Here, let me help them: Fat shouldn't HURT. Yes, it can make your joints hurt, but the fat itself? Doesn't hurt.


----------



## Tina (Aug 24, 2011)

Diana_Prince245 said:


> Health conditions that affect mostly or only women have been ignored for years. The medical establishment, ie mostly male doctors, insisted fibromyalgia was merely hysteria on the part of women. We failed to study heart disease in women until the 1980s, because the medical establishment couldn't fathom that it would manifest differently than in men.



Very true. Just in modern times, migraines, interstitial cystitis, chronic fatigue and fibromyalgia are four of them. All of these conditions occur far more with women than men, and all have been put in the category of "imaginary disorders" before they were finally recognized (migraines in particular; the rest are still, according to some doctors, all in our head) as being real.

I was told that my chronic fatigue was all in my head when I first went to my doctor for it. Too many diseases and syndromes that are suffered almost exclusively by women are often discounted by medicine, until they have to recognize it. Or it's profitable for them to.

I have lipedema, too, and was diagnosed by my lymphedema physical therapist. Like Musicman's wife, I had to diagnose myself and tell my doctor what I had (when it came to lymphedema). By that time I was already stage three/incurable.

It's a very painful condition, and between that and the fibromyalgia it made a test I had to get last week positively excruciating.


----------



## Diana_Prince245 (Aug 24, 2011)

I'm so sorry you had to go through all that, Tina


----------



## Tina (Aug 24, 2011)

Thank, Diana. I was living in California when diagnosed, but have been living in Quebec, Canada for the last few years. Here, I was made to get a test to see how my arteries were doing just in order to get a Rx for compression stockings. It's delayed things for months! And the tester said she wasn't sure why I was told I needed the test (because my doctor is a cunt and hates me, that's why). And in doing it, they had to put blood pressure cuffs on each ankle/lower calf and inflate it to excruciating degrees several times on each leg. I don't cry easily and I was crying a bit then. The fibro was so bad the next day I could hardly move.

Too many medical people do not have an understanding of lymphedema, let alone lipedema, and we pay for that, literally and figuratively.


----------

