Hi friends,

This week’s issue addresses topics that can be difficult. There's a study on a part of lipedema that almost never gets talked about, and an essay about the feelings we tend to hurry past.

There's lighter fare too, including some swimsuit finds so you can actually enjoy the water this season. Enjoy, and don’t forget to hit reply and give me your thoughts, suggestions, or feedback. I read them all.

Lipedema Awareness Month continues. Here are some highlights from this week:

The Ehlers Danlos Society welcomed The Lipedema Foundation as a sponsor of their 2026 Global Learning Conference. The theme is “Connecting The Stripes": Exploring Comorbidities in EDS and HSD”. This is a great opportunity to continue to spread awareness about lipedema.

The American Lipedema Association announced the winner of the first annual “All or Something” Award that honors the amazing Pattie Cornute, the founder of Lipedema Fitness. You can watch the award ceremony on the American Lipedema Association YouTube channel. Also, consider becoming a member of the Association. They are working hard to advocate for lipedema patients. Learn more HERE.

A PubMed article posted this week looked at a study published this year on something most of us never see addressed in a doctor's office: how lipedema affects sexual health and intimacy. Women with lipedema reported significantly lower sexual function and 76% scored in the range for sexual difficulties, compared to 36% of the other group. The struggle wasn't just physical. The biggest factors tied to it were depression, how women rated their own overall health, and lower-body function and pain. The pain, the mobility limits, and the emotional weight of living with lipedema all show up in this part of life too. The article calls for care teams to actually ask about intimacy and treat it as part of comprehensive lipedema care.

The next Lipedema Roundtable is June 17th. You can register HERE. It’s a wonderful time spent with others who understand.

A few years ago, after avoiding it for a long time, I finally went back to the gynecologist.

My lipedema had exploded after my second child was born. I knew it was going to be hard. I'd had enough appointments with doctors who didn't know what lipedema was and didn't seem to want to. But I went anyway.

Before he sat down, and before he even looked at me, he said: "You're a lot bigger than you were the last time I saw you."

After the initial sting of those words and the cold way he delivered them, I took it as an opening. I told him I'd been diagnosed with lipedema since we'd last seen each other, gave him the short version of what it is and why my body had changed.

He could not have been less interested.

There's a feeling that came over me right then that I still don't have a good word for. Not shame. I knew shame. I'd brought plenty of it into the room with me already.

And not anger, either. Anger I can do something with.

This was more subtle and quieter than that. It was the feeling of explaining yourself to someone who'd already decided not to listen. And then what came after wasn't really a feeling at all. It was something turning off.

That's one of the feelings nobody names.

There are others.

The feeling of slowly disappearing from photographs and not being able to say exactly when it started.

Being in a room with people you love and feeling like the largest thing in it.

Rage that has nowhere to go, because the person who hurt you didn't mean to. And now you're supposed to be grateful that they didn't mean to.

The exhaustion of explaining lipedema and advocating for yourself, but also knowing that if you stop, no one else will do it for you.

These feelings don't always make it into the lipedema conversation. We jump to solutions, to protocols, products, what to try next. And solutions matter, but you can't keep skipping what's underneath them and expect to feel okay.

Naming a feeling isn't the same as staying stuck in it. Some women worry that if they let themselves say this is hard, they won't be able to climb back out. What I've found is the opposite. The feelings I refused to name stuck with me the longest. The ones I finally said out loud, even quietly, to myself, in the car, or while journaling, were the ones that seemed to be less painful.

You don't have to do anything with these feelings today. You don't have to fix them or share them or even understand them.

Just knowing they are real and that you’re not the only one carrying them can be helpful.

That's where it starts.

If you struggle with getting shoes that fit, Pandere has a lipedema page with recommendations for lipedema patients. They are having a pretty good sale right now. I really like the Tango Slide.

Please don’t let lipedema keep you from enjoying the summer at the beach or pool. There are so many great swimsuit options now that don’t require you to show every lump and bump on your body. I love my swim capris, and it’s becoming more and more common to see people of all sizes sporting swimsuits that cover more of their body…sometimes for vanity reasons and sometimes for the extra protection from the sun. You can check out options up to size 5x at Calypsa. I also love this skirted swim capri at Catherine’s that goes up to size 40. JunoActive also has some great options. Yes, they are more expensive, but they are also high quality and will last a long time. Also, check out Super Fit Hero, with sizes up to 7x. I was excited to see that they shared an awareness post about lipedema on their Facebook page.

Just so you know: none of these are affiliate links, and nothing here is sponsored. I only share what I find that I think you might like. If that ever changes, I'll tell you.

Thanks for reading.

Hit reply and tell me one thing you'd like to see in future issues. A topic, a question, a resource you wish more women knew about. Anything.

I read every reply.

See you next Friday. 💜

April

P.S.

If you’d like to share some of your lipedema journey in a future Lippy Notes, let me know by clicking reply.