Season 5 | Episode 4: Real Talk Q&A: Pain, Providers & Living with HS

In Episode 4 of SuppuraDivas, Brin and Cyd sit down for a real, unfiltered Q&A straight from the HS community—tackling the questions that don’t always get talked about, but absolutely should.

From navigating the daily reality of HS pain and the challenges of finding effective relief, to understanding when it’s time to seek a diagnosis, this episode dives into the lived experience behind the condition. The conversation explores the balance between managing symptoms, advocating for yourself in medical spaces, and confronting the emotional weight that often comes with HS. 

They also break down what to look for if you think you may have HS, how to approach providers (and when to get a second opinion), and the truth about where things stand today—yes, there’s still no cure, but there are evolving options for management, support, and hope. 

This episode also opens up an important conversation around trust in healthcare, representation, and why showing up—especially in clinical trials and research—matters for the future of the HS community.

Whether you’re newly diagnosed, still searching for answers, or supporting someone on their journey, this episode is a reminder: your pain is real, your voice matters, and you deserve care that meets you where you are.

Resources & Community

Find support groups, teen resources, advocacy tools, and educational materials at:
👉 HSConnect.org

Follow the conversation:
📲 Instagram: @hsconnectorg
📲 Instagram: @socialcydd

If this episode resonated with you, share it with another HS Warrior and help us continue amplifying patient voices. You are not alone — and your story matters. 💜

This podcast was made possible by our sponsor Moonlake, and past sponsors UCB and Sanofi.

Transcript

SPEAKER_00 0:00

We're the hydratonite of Superedivas in the HS you'll want to meet us. It's not your fault with the shade you a hulk. HSD you know how to have a bottle of the hydratonitis Superedivas. The shade you a hogs.

SPEAKER_01 0:14

It's not your fault. Hi everyone and welcome to this episode of the Hydratonite of Superedivas. I'm here with Sid, of course. Um, and today we're gonna go through some of the QA that you guys have had for us lately. Um I think we've got a couple of questions that we can excuse me that we can talk about. Take her breath away. Yeah. Jeez. Um, all right, you I think you had the questions.

SPEAKER_00 0:42

Shoot, sister. Alright, so we'll start with the first question is commonly asked, not commonly talked about though. So it says, What do you take for the pain? Um, and I know we've talked before on an episode with a medical professional who was telling us like if it was a hormone thing, with the periods, like I used to take ibuprofen, um, but I was taking it so often that now I'm like, I probably shouldn't take it more. I can reach my lifetime maximum. So now I mean personally, for me, if my age I mean, before I was talking about my HS journey, I had never once considered, even though I'm in some immeasurable amount of pain, like, what can I take for this pain? You know what I mean? I never thought like that, and I think also my my um perception of that is skewed because I am a recovering addict of harder drugs, and so now like getting addicted to anything else terrifies me, and so I'm like, I don't know what people are taking for the pain. What are you taking for the pain?

SPEAKER_01 1:51

Um, I typically, like most of us, you go to the ibuprofen and tylenol. I think one of the things that most patients don't know is that you can alternate those because they don't process through the same organ, one goes through the liver, one goes through the kidneys. So it is safe to alternate those medications like every six hours.

SPEAKER_00 2:09

Wow, I always wondered why they did that for kids at the hospital. Wow, that's the more you freaking know.

SPEAKER_01 2:15

So, in that way, you're kind of being covered the entire time. Um, you do want to pay attention to the limits on the bottle about how many you can take. So this isn't to go take a ton, um, but it is something that you can use to help manage that pain, it just kind of helps take the edge off. Um, that's pretty much the number one thing that I know how to do. And I feel in some ways, like because we haven't had much in the way of pain control for our HS, um that we don't even ask about it anymore because you kind of just know that you're gonna be met with a no, or you look like a drug seeker. Um because people are like, well, it's just your skin, it can't be that big of a deal. It's fine. Oh, that thing looks like a mosquito bite, and you're like, no, it's like a freaking volcano that's going to erupt and at that point, hopefully all over your face for being such a dick about the pain. Um, so I think that you know, a lot of us take ibuprofen and tylenol, but have lost almost like the faith or the belief that it will work anymore. And then I'm constantly surprised by like, oh yeah, it actually does. But because we take it so frequently with HS, you're kind of just like, mm-hmm, sure, pop and you know, it's like candy.

SPEAKER_00 3:30

It's like routine.

SPEAKER_01 3:31

Yeah, you've got it in every, you know, it's on your nightstand, it's in your medicine cabinet, it's in your purse, it's it's everywhere. Um, so I think that's the number one thing. And then we are, you know, we're working with some pain specialists uh to try and figure out if we can come up with some kind of a plan for pain with patients because we know this is you know, pain is our number one unmet need next to mental health, and we know that this is an issue, an ongoing issue. So as a patient, I look at things differently than a provider, obviously, because I don't have that liability piece of addiction and all of those kinds of things, but I feel like the pendulum has swung a little bit too far the other direction now to preventing people from getting pain relief that they need because people chose to abuse that. So I'm kind of working on like can we find a middle ground that we have to do.

SPEAKER_00 4:28

What system can be created to show that our pain is serious and we need treatment?

SPEAKER_01 4:33

Right, and also like what do you do? Is it possible to give someone um like five opioid medication, like a prescription for five? And if you have somebody who's coming in every week and needs a refill, well then we may have a bigger problem or we may need to go, you know, move to a pain um management specialist. But if somebody's coming in every six months and saying, like, okay, I had to use my my stash, can I get a refill? That seems very reasonable for someone who has active HS.

SPEAKER_00 5:02

Yeah.

SPEAKER_01 5:02

You know? So really trying to say, is there a middle ground that makes everybody happy and feel comfortable? Because you're not creating an addict off of five pain pills unless there was a pre-existing issue, you know, that could be.

SPEAKER_00 5:15

So do you see in the future like pills will be the way for pain management, or do you think that like, like, how does lidocaine truthfully work? Like, there's not lidocaine patches that you think are beneficial. I've never used one personally, but I don't know the like medical feedback.

SPEAKER_01 5:30

Um, I think most of I think right now for what we have for pain, it's mostly in the the opioids that would be able to help. But we've also found through people like doing this that we tend to hoard our medication. And in some cases, just knowing that that's available to you if you need it is like enough. It's like the safety net of being able to say, I have this if I need this, like the break in case of emergency kind of thing. You know, like if I got to the point where I needed really, really to control my pain, then I have that ability. Yeah. And I think in some cases, just the mental load of that being like off of you, it's like I have some control here. I have some agency over what's going on. I'm not gonna have a bad day actually. Right. I have what I need to get through this if I need it. Um, and we're finding that a lot of patients don't actually end up needing to use it, but it's this it's the knowledge that it's there if they needed it that makes them feel empowered to manage their own pain and not have to call in for an uh steroid injection or go in for an IMD, which is super unad not advised, um, you know, or try and get in for like a deroofing procedure to ease that pain.

SPEAKER_00 6:50

So that's good. We definitely need it is an unmet need in the community, and I know um it's because a lot of us aren't comfortable talking about it because we don't think we're gonna get taken seriously.

SPEAKER_01 7:03

Yes. Hey guys, sorry to interrupt. I just want to talk about something that I think a lot of us in the AJS community overlook, which is clinical trials. I know, I know. When you hear clinical trial, your brain probably goes to a lab coat and a clipboard situation. But honestly, it's not like that. Being in a clinical trial is just going to the doctor's office. You're seen by a care team, you have appointments, they're checking in on you. It genuinely feels like some of the best, most attentive medical care you will ever get. And here's what a lot of people don't realize it's completely covered. You're not paying out of pocket for any of it. And many trials actually help with travel costs too. So getting there isn't on you either. For those of us who've dealt with HS and know how expensive and exhausting this condition can be, that's actually a huge deal. Beyond the personal stuff, every person who enrolls helps us get closer to better treatment options for everyone living with HS, and that matters because we all know how much we need more treatment options. A big thank you to Moon Link for sponsoring today's episode and for supporting the HS community in a real and meaningful way. We'll drop a link in the show notes if you want to learn more. Alright, alright, now back to it.

SPEAKER_00 8:15

Another question is how to tell if you possibly have it and when to know to get checked. Do I see my regular provider?

SPEAKER_01 8:24

So if you think you have HS, you likely have HS. Um, if you've had two or more boilike abscesses in the last six months anywhere on your body, other than the palms of your hands, the soles of your feet, and your lips, you most likely have HS. So I would take my little booty and go straight to uh I would recommend starting off with a dermatologist. Obviously, it depends on your insurance. If you have an HMO, you would have to have a referral to a dermatologist. So you would see your primary care first and then move on to a dermatologist. Um, we recommend seeing someone who's well versed in HS because especially when you're in stage one, it's harder to diagnose because you don't have the as much tissue damage yet. So you don't have the tunneling, um, you don't have you know multiple widespread abscesses in most in most cases. So in those situations, we would highly recommend that you get into a derm who is fluent in HS. Um, there's a derm finder on our website at hsconnect.org. The HS Foundation has one, ours includes theirs and patient recommendations. So ours is gonna have more derms than theirs are theirs will. Um but absolutely, and I would go in and say, I've researched this, I've looked it up, I've had two or more boil-like abscesses in the last six months. I, you know, that is the main criteria for HS. And then, you know, if you think that this is what you have going on, then be emphatic about it. Make sure that you don't back down if they're like, oh no, that's not it. We just had an episode with Ashley where she they told her there's no way possible that she could have HS. Seven years later, sure as shit, she's diagnosed with HS.

SPEAKER_00 10:10

So, like, you know, it's gotten way worse from when she was at that initial appointment, but it's like if we can't, just because they have the coat on doesn't mean we take what they say as Bible. Absolutely advocating for yourself even when you're not hearing what like you want to hear, um, and making sure that you're fighting it's at the end of the day, you guys, it's it's it's your skin you have to live in, you know, so fight for that.

SPEAKER_01 10:35

Yeah, and go get a second opinion if you're not happy. If you don't like your dorm, if you think like no, this is absolutely, you know, I'm fairly certain this is what I have, go get a second opinion.

SPEAKER_00 10:45

It's sometimes it's just like energies. I remember like meeting one of when we moved to Aurora, having I went to take the kids to a doctor's appointment and just like me and his energy wasn't aligning. You're not vibey. I was like, we're gonna find a new doctor, and it's like maybe he maybe that's his energy was great for somebody else. But it wasn't for me and my kids, so we were out the door, you know. But I wasn't afraid, and y'all, full disclosure, he was being black, and I was so happy to see a brother, and you were gonna be vibing, and we were not, so you you gotta go where you know where you feel comfortable as the patient. Absolutely, absolutely. It's like, is it seriously not curable?

SPEAKER_01 11:25

Seriously not curable right now. Um listen, you know, we haven't even figured out exactly how it happens yet, so we gotta figure that part out first, and then um, you know, hopefully one day there will be a cure in the interim. There are definitely ways to medically manage your HS. So while we don't have a cure, there is a lot of different medications on the market that can help manage the condition. Um, so that's as close as we have right now. And like I said, I mean, hopefully one day there are some really freaking smart people working on HS. Like so smart. Yeah, I've never felt more stupid in a room full of people than like an SHSA when they're getting the medical room doing all of this fancy stuff.

SPEAKER_00 12:14

Yeah, like um, I know what gut health means.

SPEAKER_01 12:16

Yeah, microbiome, yeah! But yeah, there's a lot of really, really smart people who really care about this condition working on it. So um there's a ton of clinical trials happening right now. So if you're interested in participating in clinical trials, we need everyone's participation. Everyone. Because if we don't participate, then they're not gonna keep coming back to our community.

SPEAKER_00 12:43

And we know we live in a really super scary world where like super rude people are trying to like be cutting funding and stuff, so we gotta we gotta show up in the spaces that were meant for us to show up. And I know that I'm speaking directly to the black community right now. We were grown up in a world that we were create, we were ex we were exposed to our parents and our grandparents who the system wasn't built for them. Yes, and so they created a fear to grow inside of our family lines to be afraid of doctors and afraid of change and afraid of things like clinical trials and afraid of medication, you know, but it's like some smart people really are just smart and they want to just really help you. And so I've learned that that like the medical community is not what it's always portrayed to be, that it's not a bunch of people who are just fear or money hungry people who just want to get you poison in your veins, like some medication is created right to be good, and in a condition like hydrogen superativa, I think we had some really smart people see really unfortunate lives being changed from their skin and said, Let's figure out all we can do to help them, and so that's exactly what's happening. I've met some of the most outstanding dermatologists and doctors and surgeons who not only are creating change but they're on social media, they see people sharing their journey, they see the skin, they're studying it, so that way they can keep being on the right positive side of the change and helping us. Um, and I know that for me as a black person in America, seeing that firsthand is what's helping me change my perspective on what medication is best for me, what treatment is best for me, how do I want what do I want my life to look like? Um, and and how can I start gaining that trust back with the medical professionals on my team, um, and not always thinking that it's a negative thing and that that there I'm just a client or a paycheck. And so um I encourage you to look out there and see if there is a clinical trial that is you know something that you would be interested in, and and don't write it off because I've met some people who have been a part of clinical trials, and the drug was amazing for them, and and it it changed their lives while they were a part of that. And so everybody deserves at the end of the day whatever can bring you relief, do that, yeah, do that unapologetically, and I think that's the beautiful thing about what we're doing in the HS community is there's some people who have found relief through lifestyle change and working out and and uh maybe losing weight. Maybe some skinnier people had to gain weight because they were losing weight because they were stressed, and some people like there's just so many different ways to try to manage your HS, it's not always gonna be so medically, but if it is, like there's nothing wrong with that. There's nothing wrong if you need to be on a medication or if you need to go to therapy or if you need to just get in a support group and start talking and sharing your story and saying what you need so that way that need could be met.

SPEAKER_01 16:03

Yeah, absolutely. And and to your point, you know, history is not something that most of us had a part in to create this fear, but I can tell you that there has been a lot of work done to make sure that that never, ever, ever happens again, and that's why there are so many rules and so many regulations surrounding clinical trials and medications and all of that is built to protect the patients now, and that's a huge change. And I think that it's good to spread that information because while you know we weren't necessarily a part of what happened, it it impacts today, and to make sure that patients know that these all of this was built to protect them, yeah. Um, and that's why it is now you know, it's such a process, and that's good because that's exactly what patients deserve.

SPEAKER_00 16:59

Yeah, absolutely.

SPEAKER_01 17:00

Yeah.

SPEAKER_00 17:01

Well, thank you guys so much. We always love having the QA episode or just hearing what it is you guys want to know. We know that you know it's cool because we're patients too, but at the end of the day, we want to know what is the what is the community logging for. And sometimes it's it's wondering how can we simply manage some symptoms and manage our HS or what product what are you using? Or honestly, it's just about being real and asking those hard questions. Is there a cure and there's not? Um, and so we hope that that resonated with you and it kind of gives you a little piece in your journey today. Um, and if you know somebody who's dealing with HS, we hope that you share this with them. Yes, please do. Thank you for tuning in with us, and we'll see you guys on the next one. Bye!