The Mysteries of Lipoedema: A Journey Through Pain and Misdiagnosis with Wendy Milligan

Wendy Milligan, a seasoned Naturopath and Metabolic Balance practitioner, and valued part of The Perimenopause Naturopath team, joins us this episode, bringing with her a wealth of knowledge and personal insight into the little known condition of lipedema. Wendy's journey with lipedema began with her own struggle against stubborn, unshiftable weight. Her experience, coupled with her battles against breast cancer and an autoimmune thyroid disease, lends a deeply personal touch and empathy to her expertise in holistic healthcare and "food as medicine." 

In this discussion, Wendy unravels the complexities of lipidema, a condition often misunderstood and misdiagnosed. She shares her insights into the symptoms, diagnosis, and treatment of lipedema, highlighting its distinct characteristics from typical obesity fat.

The episode is a must-listen for those dealing with unexplained weight issues, particularly in perimenopause. Wendy and Sarah delve into both the physical and emotional challenges of lipedema, offering practical management strategies and a holistic perspective on health and well-being.

Tune in to gain a deeper understanding of lipedema and empower yourself on your health journey!

ABOUT WENDY:
Find out more about Wendy here: https://sageandginger.com.au
and work with Wendy as part of The Chaos to Calm Method

Find out more about Sarah, her services and the Freebies mentioned in this episode at https://www.ThePerimenopauseNaturopath.com.au

• COMING SOON: Discover how to use food as your most powerful medicine, smoothing hormonal fluctuations and easing perimenopause symptoms naturally. (Yes, you have more options than hormone therapy!) Say goodbye to feeling out of control and hello to feeling more like your old self every day, with PerimenoGO (because who wants to pause anyway?!)
• The Perimenopause Decoder is the ultimate guide to understanding if perimenopause hormone fluctuations are behind your changing mood, metabolism and energy after 40, what phase of perimenopause you're in and how much longer you may be on this roller coaster for.
• Been told your blood test results are "normal" or "fine" while you feel far from your best? Discover the power of optimal blood test analysis with The Blood Test Decoder: Optimal Ranges for Women Over 40.
• For more, follow on Instagram at @theperimenopausenaturopath.

Transcript

Sarah McLachlan: 0:03

Hey there, I'm Sarah McLachlan. Thanks for joining me on the Chaos to Calm podcast, a podcast designed for women over 40 who think that changing hormones might be messing with their mood, metabolism and energy and want to change that in a healthy, sustainable and permanent way. Each episode will explore topics related to health and wellness for women in their 40s, like what the heck is happening to your hormones, what to do about it with nutrition, lifestyle and stress management, and inspiring conversations with guests sharing their insights and tips on how to live your best life in your 40s and beyond. So if you're feeling like you're in the midst of a hormonal storm and don't want perimenopause to be horrific, then join me on Chaos to Calm, as I share with you how to make it to menopause without it wrecking your relationships and life. Hello and welcome to Chaos to Calm podcast. I am your host, sarah McLachlan.

Sarah McLachlan: 1:04

Joining me today for episode 31 is Wendy Milligan, and we're going to be talking all about lipidemia. Now, if you have watched my free masterclass, you might already know Wendy's name, because she is the most amazing naturopathic detective who works with me in the Chaos to Calm method, helping women over 40 master the chaos of their changing mood, metabolism and energy that comes in perimenopause, so they can feel calmer and more in control, less stressed and more comfortable in their clothes and body again. So without any further delay, let's dive into the topic of lipidema with Wendy. So welcome, wendy. Thanks again for joining us here today. Your journey has given you first hand experience with lipidema, which is what we're here talking about today. Can you tell our listeners a bit more about what lipidema is and how it tends to appear or manifest in women?

Wendy Milligan: 2:05

Yeah, so it's a buildup of subcutaneous adipose tissue or fat, and it mainly forms on the legs and arms. So it's a different type of fat to normal obesity fat. It feels different, it looks different. The one thing we don't know about is exactly why it happens, but it seems to happen more around those kind of hormonal challenging times in women's lives. It's mostly affecting women. Only Very few men have it, but I actually have had a male client who was diagnosed with it. So it does happen in men, but it mostly affects women.

Sarah McLachlan: 2:49

Okay, and so when you said before that it feels different to regular fat, is it harder or what makes it different?

Wendy Milligan: 3:01

It can be hard and it becomes fibrotic. But you can feel under the skin sort of little lumps, little. They can be like the size of a piece of rice or up to like a bean sort of size, some both even bigger, and it just the actual texture feels a bit different as well. I don't notice it because I've only ever had my skin, but I have a manual lymphatic drainage therapist and she says she can tell by just the texture of the skin whether someone has lipidema and the lumpy bits beneath.

Sarah McLachlan: 3:34

Okay, so it might come up for someone say if they're thinking, oh, I need to lose weight, or they want to lose weight, they're not happy with the shape or size of their body, does it come? It doesn't come away, though, like a regular fat loss or no, no, you can't lose it.

Wendy Milligan: 3:52

It's and that's often when people find it like you know, especially Well. I find it mostly because I work, like you, in menopause that women will go on diets, lose their weight, but they've still got these really larger legs or arms and nothing they do will fix it. And you can't lose it naturally. There is a liposuction technique that is used, but it's very expensive and it's not available for everyone. And yeah, you just can't lose it by natural dieting or exercise. That's never going to do it.

Sarah McLachlan: 4:28

Yeah, and is that how it came up for you? Or is that how you first learned that you had lipidema was through your own weight loss journey?

Wendy Milligan: 4:37

Yeah, partly, and just the pain. I was in a lot of pain in my legs, bruising, and I started seeing more lipidema clients in clinic, and when I was looking at their legs I was thinking, oh, that's what I've got. And so that was. That's the start of my journey.

Sarah McLachlan: 4:57

So they were diagnosed already? Yes, yeah, and is it something you know like? Often for women, say, struggling with endometriosis or something like that, it can take 10 years to get diagnosed. Is lipidema like that? Does it take us a long time to get diagnosed?

Wendy Milligan: 5:14

Yes, because a lot of GPs don't know it. They don't know what the condition is. They might mistakenly diagnose it as lymphedema. Yeah, although just fat. Shame women, which is just appalling, and just tell them you know, here's a diet pill, or exercise more, eat less. Yeah, that's not going to work. You know, sometimes I see women coming who are eating virtually nothing and they're going. Why can't I lose this weight?

Sarah McLachlan: 5:41

Yeah, yeah. Well, we both know that eating less and moving more isn't the solution for weight loss, especially in perimenopause and menopause, but definitely not, from what you're saying, with lipidema there. So sometimes it gets confused with lymphedema, which is the swelling in your lymph glands. But lipidema doesn't necessarily happen just around your lymph nodes or lymph glands, does it? Can it be anywhere on the body, or does it tend to form more in one place or yeah, so lymphedema can occur in a whole limb, but it's generally not bilateral.

Wendy Milligan: 6:24

It'll affect one limb or the other, it can affect both, but it also has a different picture in that say, for example, like me, I have lymphedema in my arm. My whole arm swells, including my hand and fingers not as much as the rest of my arm, and I've got slight lymphedema on one of my legs. But with lymphedema it's bilateral, so it happens mostly evenly on both sides.

Wendy Milligan: 6:49

And it happens around the hips, the thighs, sometimes the lower legs. It doesn't affect the hands and feet. So while someone might come in with really obvious lymph lymphedema in their legs, they may still have lipidema as well. But if their feet are involved, you know that that main presentation there is affecting the lymph system, not just the buildup of fat. So it can be a quite complex thing to diagnose.

Sarah McLachlan: 7:21

And, as you were saying, and sometimes the two can go together as well, which I guess, adds another layer of complexity or contributes to it being a delay in diagnosis or resolution, I suppose as well. So you mentioned before that One of the solutions is liposuction. Do people tend to get prescribed? Or, and you mentioned, often weight loss medications or things like that are tried, but that's not going to resolve that underlying issue. Are there any other medications or things that people will get prescribed, or is it just something that is going to get worse over?

Wendy Milligan: 8:03

time. If it's left untreated, it more than likely will progress. Just from my own journey I didn't do anything about it for years and I probably had this. Probably had it since I went into menopause unexpectedly after I had to have a hysterectomy in my ovaries removed, so I was putting on weight then I just assumed it was because I was in menopause.

Wendy Milligan: 8:28

But the pick that when I look back now the way my skin was acting. It was getting all dimpled and I was bruising. I probably had it back then, but I didn't do anything about it because I didn't know.

Sarah McLachlan: 8:39

Then when.

Wendy Milligan: 8:40

I realized that that's what I had. I started to use management techniques. I wear compression, I try to have an anti inflammatory diet. There's things like that. I've just been doing a lot more research recently about supplements that are really effective. Make sure you've got adequate selenium levels and vitamin D All the things that we think about anyway now work. Using herbs as well, like butchers, brim and things like that. There's some really good research around that now too.

Sarah McLachlan: 9:10

Oh, that's exciting. Research on herbs is always exciting, isn't it? It doesn't happen so often.

Wendy Milligan: 9:18

Exactly Because we don't know for a definitive reason how it starts. It's difficult then to know which way to go. There's a couple of doctors who've released some new studies this year and they call it a subclinical chronic compartment syndrome. Oh right, but like you know, in your legs there's like you have different compartments like where there's almost like it's fascia related then.

Wendy Milligan: 9:47

They think it is yeah wow, how interesting. Yeah, exactly, it's a way that it's not really lymphatic system, it's more the way the vascular system works. So that's a bit exciting. So I'm going to be doing a bit more research around that, you're going to go down the rabbit hole there.

Sarah McLachlan: 10:05

For that You'll have to come back and give us an update another time then. So that's really interesting as well. So yeah, not knowing the underlying driver or it makes it difficult to address. But there are still things people can do, and it sounds like for lots of people they might get it confused with, say, cellulite or something like that.

Wendy Milligan: 10:27

Oh, yeah, definitely.

Sarah McLachlan: 10:29

Yeah, and that can delay your diagnosis there as well. So, yeah, it'd be good if they can know more about it. I think there's so much research going on with the fascia at the moment. It's really interesting in how it impacts lots of different conditions. Excited to see more about it come in the future there as well.

Sarah McLachlan: 10:50

So we've talked about how it might get confused with regular weight gain and and definitely moving into perimenopause and then postmenopause would definitely be confusing or people would just write it off as oh well, I'm just gaining weight because menopause. And you've touched on a couple of the differentiating factors. How, what would they be feeling? You mentioned bruising before. If that comes up, it's sort of indicating maybe lipidema and the texture of it or the patterning of it and the locations. Are there any other symptoms? Or, oh, you've touched on pain. Can you tell us a bit more about the quality of the pain or how it would feel for someone?

Wendy Milligan: 11:41

Yeah, it is quite painful at times. I've recently just had a bit of a flare and the pains in my calf muscles and around my knees have been quite intense. And then you get a bit more swelling as well because everything's sort of so inflamed. But some people don't have any pain. But most people that I've spoken to anyway report some pain, and some people have it constantly and others have it periodically. It's so variable how it affects people.

Sarah McLachlan: 12:12

And again, not knowing why, makes it difficult to predict it, doesn't it as well? And so when it does come up, is it more likely to be, say, like a consistent, dull kind of pain, or is it more like sharp, or does that vary as well for people?

Wendy Milligan: 12:29

I'm just trying to think about how my pain has been these last few weeks. It's been a dull pain but quite intense. So, like you know, it's been impacting my walking and I walk every day and it's been impacting that the knee pains. You know, I think a lot of women have knee pain that have a good schema. You know, bending things like that, like I can't, couldn't, squat down on my you know haunches or anything like that. That's just no, no, no. So I think there's a lot of people that have issues with their knees. One lady I was talking to a couple of weeks ago she said that for her it feels like almost like her legs are on fire. They're not hot to touch or anything, but that's the kind of how she could describe the pain that was happening in her legs at that time.

Sarah McLachlan: 13:13

And again, that would be something you might write off as flushes or something like that as well.

Wendy Milligan: 13:18

Yeah, so, yeah, I think it's unfortunate that it just takes has so many. You know it affects people in different ways.

Sarah McLachlan: 13:28

Yeah, which again contributes to making it harder to get it diagnosed, because it's not that consistent pattern Exactly, it's hard to get it to people.

Wendy Milligan: 13:37

You know, I just try and encourage people to try and lose as much of the you know obesity, fat as possible and then you can see what's what was left you know to deal with. So you know, try compression and that can help with the pain as well.

Sarah McLachlan: 13:53

Yeah, so staying connected with a health professional and perhaps you know something about lipidema as well is is good, or start the conversation with your GP and if there's that stubborn weight or you can't lose it and it fits in with those patterns that you've talked about in terms of the texture and and where it is on the body and pain and bruising, they're all things to start considering.

Sarah McLachlan: 14:20

I think it's important to remind people not to self-diagnose but to talk with a health professional about it, and you've mentioned that there is. You know, anti-inflammatory diet has helped you and you use your personalised nutrition plan, which is what our clients all get because it's naturally anti-inflammatory for them as well. You've talked about some of the things that you did in terms of nutrients and herbs or nutrient levels. Again, they're all things that we test with our clients, but encouraging people to do that as well regularly, particularly vitamin D, which can be tricky to get Medicare subsidised, but you can always request yourself or pay for to get it updated because we know how important it is for so many aspects of health.

Sarah McLachlan: 15:05

Is there anything else that you wanna tell us about Lidipidema that we haven't talked about there today? We've covered quite a bit of ground there and how tricky it can be to get diagnosed as well.

Wendy Milligan: 15:17

I think some of the other things that people can think about is there are other associated things, like a lot of women have hypermobile, so EDS.

Sarah McLachlan: 15:27

Yes.

Wendy Milligan: 15:28

Thyroid dysfunction actually, because T3 regulates the formation of new adipocytes and the formation of trochocerides, those kinds of things. So you know, we've gotta make sure that the thyroid's functioning properly, which is often can see issues in perimenopausal women anyway, to make sure that we keep supporting the thyroid gland as well.

Sarah McLachlan: 15:50

So they might have a low T3.

Wendy Milligan: 15:53

T3, yeah, yeah.

Sarah McLachlan: 15:55

And higher triglycerides.

Wendy Milligan: 15:58

Yeah, and the other thing is like there's a condition called Durkheim's disease, which a lot of well, not a lot, because it's a rare condition, but things like lipomas, those kinds of you know, build up a facet, fatty tumors. They're quite common in women with lipodemum as well. So they're just a couple of other things that you can you know other things that might put you on that diagnosis path more quickly. Mm-hmm. A lot of them also have holes in their heart, so if you're gonna have this liposuction done, they'll always check for that.

Sarah McLachlan: 16:34

Okay, that's really interesting. Hopefully sometimes soon there's research that puts it all together, of why those things are connected in the way that they are or what genetically predisposes you to forming lipidema there as well, and that gives us opportunity for something to do something else to do about it there as well, yeah.

Sarah McLachlan: 16:55

Yeah, that's really useful. Thank you so much, Wendy, for sharing your knowledge and time with us today. I was going to add that in the show notes is the perimenopause the blood test decoder, so people can pop and download that and have a look at their blood tests and look at them from the optimal ranges rather than those normal ranges and see where they're sitting and that gives them the opportunity to help preventative care and get that back into balance and at least reduce maybe their risk of that developing. But yeah, thank you so much for talking us through lipidema and what it might look like and start that thought process for maybe some women who are having trouble losing weight or seeing a pattern to it and that stubborn weight gain there as well.

Wendy Milligan: 17:48

Yeah, that's nice.

Sarah McLachlan: 17:49

Yeah, yeah, I think it's not something, like I said was saying to you before we started recording. It wasn't something I'd really thought about, or actually I don't remember learning about it at uni when I was studying to be a naturopath.

Sarah McLachlan: 18:02

And so it's great to shine a light on something else that might be underlying what's going on, so that people don't feel like, oh well, it's just me and I'm no good at I can't lose weight, or any of those negative self-talk and those criticisms that people might have of themselves because they are having trouble losing what they just think is regular fat mass, Be following all the diet and eating well and exercising well and still have these stubborn areas of fat.

Wendy Milligan: 18:32

well, the whole mindset around that is huge and I often encourage people that you need that a team around you like people to help with the emotional support as well as the physical challenges that are there, because it can be pretty hard to deal with sometimes.

Sarah McLachlan: 18:51

Yeah, absolutely. And because we live in a society and the reality is that we're valued or women are valued mostly for their looks and their body size and shape, we're told it has to be a particular way to be acceptable, and menopause can present in that offer for challenge in terms of we're also moving from that phase of being valued for every productive capacity as well. So it's already all those things coming up, and then adding into having a body that doesn't fit into that norm is difficult there, and so, yeah, accepting it or loving it and accepting that this is how it is can be really difficult.

Sarah McLachlan: 19:30

So, support team is crucial for sure. So thank you so much, wendy, for your words of wisdom here today, and if people wanna contact you, I'll drop your details into the show notes there as well, so they can find you there. If they wanna talk more lipidema with you or work with you, they can do that there.

Wendy Milligan: 19:50

Great.

Sarah McLachlan: 19:58

It's really common for women over 40 to experience the chaos of changing hormones, mood, metabolism and energy. But I hope you know now that common doesn't have to equal normal for you or them. You can help others understand they aren't alone in feeling this way and that perimenopause doesn't have to be horrific by subscribing, leaving a review and sharing this podcast with other women in their 40s and beyond. Thanks so much for listening and sharing your time with me today in this chaos to calm conversation.