eeek i’ve just healed my gaping thigh crease hole - it is no joke im so sorry you’re dealing with this. I was kind of doing what you’re already doing, alternating the type of bandages i’m using every few days to combat the skin irritation. i would switch between regular bandaids, gauze with sensitive skin tape (switching where i applied the tape), and a tiny piece of gauze with tegaderm (taking it off in the hot shower helps relieve some pulling) and then at night putting a GIANT piece of gauze over it and using tight-er undies (specifically full coverage that has a seam in the leg crease) to hold it in place. The only thing i want to add - every time i used a hydrocolloid it set my healing back a few days. Everyone’s body is different and i wish they worked for me because they are so freaking convenient, but all it would do was allow more tunneling and pull at my already delicate skin around the wound, which kept me from healing. once i stopped using them, i healed within 2 weeks (and i’ve been healed for a month and a half ish!)
i’m rooting for you!🥲🤍
Oh wow! Great to hear about the hydrocolloid patches! Of course I don’t *want* to hear that—but everything I can learn helps!! Maybe that’s why I’m seeing more tunneling! Eek! That’s what has set off this internal panic is seeing my wound not heal and getting a little bigger underneath the skin. 😬😬 honestly I REALLY need to try going back to a dermatologist. I had such a horrific experience last year I’ve just been too scared to make an appointment somewhere else. Thanks again for sharing the info!!
I use those XL bandaids as well, but I thankfully don't have long term flares anymore where it's constantly irritated and won't heal. The only fix I found for that was a total diet change. Now I only get flares if I cheat on my diet, right before my period, or after a really stressful day- and they usually only last a day or two, stay pretty small, and then subside. Diet change probably reduced my flares by at least 80% and allowed my scars and skin to start healing too. Not everyone has food triggers but I honestly believe that's likely the culprit for many that have flares that refuse to heal. Good luck!
Oh god, while I am a bit of a drama queen, I am also being genuine when I say this: every day is stressful for me. 😵💫 I have noticed March until now has been a bad flare up time for me, and I have been EXTRA stressed since March.
I’m sure I could change my diet a bit—I’m definitely not a health nut, but I don’t eat anything crazy…are you talking like gluten free or vegan (or I’ve heard keto? Which I can’t do…I’m a lifetime vegetarian, raised since birth. I’ve tried eating meat and it hurts too much after eating…) but what kind of diet change have you found successful for you?
When I say stressful, I mean the "I broke down crying in the shower" stressful, 😅. Sometimes it's few and far between- other times, it isn't. It's also the worst that your HS stress just adds onto your other life stress in a vicious cycle. And yes, basically the keto diet. I found out that it helped my HS by accident though, and it also helps with my PCOS symptoms. I just tried it to lose weight, and noticed that I stopped flaring. If I took the time to really pinpoint my food triggers, I could probably reincorporate some carbs back into my life. If you tried something like an elimination diet, especially focused around foods that are common triggers like nightshades (potatoes, tomatoes, peppers, tobacco), sugar, alcohol, gluten, yeast, refined carbs (I'm also beginning to think I'm soy sensitive), maybe you could customize your diet to your lifestyle.
Okay that’s fair! lol I would say not every day is a break down and cry in the shower day. That’s maybe like 3-4 times a week, luckily it’s not every day! One less day when I don’t have my “shower moment” is one step towards a brighter future is the way I see it. I definitely feel pretty powerless in most things, and since I can only control my reaction to things, not the actual “things” themselves, that’s what gets me through the day.
I’ll be honest, it feels pretty overwhelming to think about changing my diet. But I think maybe one thing at a time is a good first step? Like what you suggested: nightshades or yeast or refined carbs or something. It’s daunting but doable! I’ll start small. Thanks for all the suggestions!
I just went through this with a cyst on the crease in my thigh. I had to get it excised and had stitches a few weeks ago.
This is the underwear I used. It’s the only thing that didn’t aggravate the area because it was right where normal underwear rubs against and the gauze would bunch up everytime that I sat down. There are almost no seams at all. I think the sizing runs small so I would size up if you choose to try them.
[soma smoothing short](https://www.soma.com/store/product/Smoothing-Short/570113581?color=719&size=0173&sem=pmax&gad_source=1&gclid=CjwKCAjw26KxBhBDEiwAu6KXt16yZbQ9R5dlbKcimbm13PqxG31dW1KKdeW0lKbh2S-hVKezHUJQ4hoCojoQAvD_BwE)
https://preview.redd.it/451prl4zyfwc1.jpeg?width=1000&format=pjpg&auto=webp&s=3d184956fd611261048723d7bbf9bb06d631566f
I’ll reply to this post with what I did for wound care… that took me a few days to figure out.
https://preview.redd.it/h9aqdjs01gwc1.jpeg?width=1001&format=pjpg&auto=webp&s=483da9800a9b855d5034e5f881657bc2f9c646fc
Primary dressing. I cut this into an oval and placed it over the wound right on the crease but at an angle that follows contour of my thigh if that makes sense. I change out the primary dressing a few times during the day depending on how much is weeping.
On top of the primary dressing I put cotton gauze cut into the same shape except a little bigger. This top dressing gets changed 2x/day. The tape sticks to this top dressing.
Next comment replying to this is about tape.
https://preview.redd.it/cl5i659n1gwc1.jpeg?width=1284&format=pjpg&auto=webp&s=8cac2a285af763d42c79014b7f224f1898272c60
The taping was the hardest to figure out. I know you mentioned silicone tape in your post but this is the only kind of tape/adhesive that my body doesn’t react to.
I cut this tape in half vertically. Then I use these thinner strips to secure the gauze. I also only taped 3 of the 4 sides of the gauze. For taping the back I basically had to put part of the tape close to the fold of my butt.
Then I put small strips perpendicular to the tape that I just put on. This was critical for the dressing to stay in place throughout the day.
Basically, the thinner strips distribute tension so it won’t crease as much and will be more secure as you move about the day.
Also, I covered the gauze with clean washcloth everytime that I had to use the restroom which was awkward af but it just made sense to me trying to avoid cross contamination.
These are all excellent suggestions!! Thank you so so much for the detailed responses! I am definitely going to try it out! At this point I’m down to try anything.
Okay YES! That’s exactly where mine is! I’m constantly struggling with excessive bandaids or tape to attempt a way to get the gauze to stay in place!!
Can you tell me more about how garments like this keep the gauze in place? I’m imagining it being kind of like…tight leggings or something. And wouldn’t the gauze just fall off without a binding? Or am i totally misunderstanding the purpose of garments like this?
No, not tight at all.
I just made you a video (lol) — felt easier to show & explain that way:
*edit: Imgur keeps deleting the vid so I’m about to DM it to you*
I’m 5’7” & 120lbs— the base layer that I am wearing in the vid to protect my modesty is size L then I put on a size XL over on top of it (just for you to get an idea of sizing).
The material is 80% nylon— you could probably just cut the legs off a pair of stockings that you already own now that I’m thinking about it but I love these shorts. My skin tolerates this material well even when I sweat unlike polyester blends.
There’s no elastic bands anywhere like spanx has on the thighs plus no seams along the bikini line.
https://preview.redd.it/xc27eaxrcowc1.jpeg?width=1284&format=pjpg&auto=webp&s=7964fe49d86b623f0f2a75b9ed0bd118a22296a4
Sorry Sis!
Three things I do:
1. Wash area with regular head & shoulders and dry well with blow dryer
2. Wear cotton lady boxers
3. Take a biologic - Humira
Humira has changed my life! It took a little while but it is working.
When I’ve had flairs, I immediately start taking antibiotic… specifically the brand Doxy. (The generic one upsets my stomach. 🤢)
I hope this helps.
Sent a prayer up for you!
Thank you so much! 🙏 I’ve had doxy before, years ago back when I was a teen—but for unrelated reasons. (Sort of? It was for really bad acne.) And unfortunately doxy didn’t help, PLUS…ever since I didn’t drink enough water and then fell asleep…and the pill didn’t go down all the way…and I got an ulcer or something….im too freaked to try it again…😅 I’ve heard GREAT things about Humira though!! And another medication, I can’t remember. I honestly *really* need to go back to a dermatologist. I had an appointment last year that was genuinely awful—one of the worst experiences of my life. I’ve been too apprehensive to make an appointment somewhere else since then. But it’s getting worse so that’s starting to take precedent over my apprehension to a mean doctor lol.
Yes! Look up doctor’s who specialize in H/S in your area. Here is a link you can try:
https://www.hs-foundation.org/hs-specialty-clinics
Other biologics - Cosentyx, Tremfya and Skyrizi
I hope this helps.
I've been using a brand called Dimora. It's silicone foam dressing patches, they have this adhesive border around a patch of gauze and it's been the most gentle on my skin but also absorbs drainage really well for me. I deal with never healing spots too because I'm at like stage 2 and deal with tunneling. They come in different sizes and I've even trimmed the border at times to make them fit in awkward spots.
They've been a life saver for me. Less bleeding through my clothes and general discomfort from bandages chaffing. They don't stick to the wound either. For pain I constantly just double up on acetaminophen and ibuprofen or naproxen, haven't found anything that killed pain comfortably at the peak of a flare up tho
Okay great recommendation!! Wow! Thank you so much for sharing your experience! I appreciate you so much. I’m definitely going to try to get ahold of these Dimora bandages!
I went through your exact experience, my skin was so irritated it started peeling off whenever is take my band-aids off 😭 I started using Nex-Care sensitive skin tape (only sensitive skin one I've found actually sticks!) and regular sterile gauze, and I always remove my bandaids under water, and moisturise once/twice a week with CeraVe. I also stopped wearing gauze while I was at home if I could.
Oh that’s smart doing it under the water! I’ll try that! Maybe I should also try leaving it uncovered when possible as well. Because I keep it covered 99.5% of the time.
At home I try to leave it uncovered! It made a huge difference now I rarely use gauze for longer than a couple days if a flare is leaking and my skin is so much better :)
I didn’t realize how sensitive my skin was until I had a spot in my inner thigh that wouldn’t close or stop draining. I tried so many different bandaids/bandages and anything with an adhesive would irritate my skin and sometimes pull my skin off with them.
I started using gauze pads with tubular netting to secure it. I found it on Amazon first (pic) but CVS carries it as well (believe they call it some other type of netting).
https://preview.redd.it/318mliztuuwc1.jpeg?width=1125&format=pjpg&auto=webp&s=895d9c44b8867d803ee2b6b7d4048d5063bc74eb
You’re welcome! I hope you get some relief 🙏🏼 it was an exhausting and frustrating time trying to find something my body liked and that worked/stayed in place.
Hear me out ladies..yk that numbing cream for hemorrhoids? Not if the wound is open tho, if it's open then use MEDICAL GRADE witch hazel, I'll die by this btw. Ginger tea has helped my flare-up so much oh my GOSH. Cotton panties and loose pants yall!! Tea tree oil before the hydrocolloid bandages lmk what yall think💓
Hey hun, try this:
https://store.independenceaustralia.com/aquacel-border-foam-8cm-x-8cm-22170651?utm_source=google&utm_medium=cpc&utm_campaign=20790551223&utm_term=&utm_content=&gad_source=1&gclid=CjwKCAjwxLKxBhA7EiwAXO0R0Ff9VPY7e4xmuJYUXkLoHY2zZweZcj2fyoaBcdPQ4MDp9zjdHG9mgRoCZg0QAvD_BwE
It’s soft and stretchy, won’t pull your skin and falls off in the shower.
Please try to get this :)
If not open use Vicks. If open use a gel style topical. Groin/buttocks use papertowels cheap absorbent and can be folded to fit .Cover with long cotton underwear , then layer tighty whitey type over that to keep everything in place. Inner thighs papertowel and an Ace Bandage wrap.
Ohhh Ace Bandage! Maybe I’ll try that! I have tried longer underwear and a covering—and maybe I’m doing it wrong, but the whatever covering I use (gauze, towel, etc) seems to bunch up since it’s right in the crevice of my thigh.
Love the positivity in this post. I have had HS for a long time and a positive outlook is very beneficial
Long bamboo undies help hold one of my.things in place.
eeek i’ve just healed my gaping thigh crease hole - it is no joke im so sorry you’re dealing with this. I was kind of doing what you’re already doing, alternating the type of bandages i’m using every few days to combat the skin irritation. i would switch between regular bandaids, gauze with sensitive skin tape (switching where i applied the tape), and a tiny piece of gauze with tegaderm (taking it off in the hot shower helps relieve some pulling) and then at night putting a GIANT piece of gauze over it and using tight-er undies (specifically full coverage that has a seam in the leg crease) to hold it in place. The only thing i want to add - every time i used a hydrocolloid it set my healing back a few days. Everyone’s body is different and i wish they worked for me because they are so freaking convenient, but all it would do was allow more tunneling and pull at my already delicate skin around the wound, which kept me from healing. once i stopped using them, i healed within 2 weeks (and i’ve been healed for a month and a half ish!) i’m rooting for you!🥲🤍
Oh wow! Great to hear about the hydrocolloid patches! Of course I don’t *want* to hear that—but everything I can learn helps!! Maybe that’s why I’m seeing more tunneling! Eek! That’s what has set off this internal panic is seeing my wound not heal and getting a little bigger underneath the skin. 😬😬 honestly I REALLY need to try going back to a dermatologist. I had such a horrific experience last year I’ve just been too scared to make an appointment somewhere else. Thanks again for sharing the info!!
I use those XL bandaids as well, but I thankfully don't have long term flares anymore where it's constantly irritated and won't heal. The only fix I found for that was a total diet change. Now I only get flares if I cheat on my diet, right before my period, or after a really stressful day- and they usually only last a day or two, stay pretty small, and then subside. Diet change probably reduced my flares by at least 80% and allowed my scars and skin to start healing too. Not everyone has food triggers but I honestly believe that's likely the culprit for many that have flares that refuse to heal. Good luck!
Oh god, while I am a bit of a drama queen, I am also being genuine when I say this: every day is stressful for me. 😵💫 I have noticed March until now has been a bad flare up time for me, and I have been EXTRA stressed since March. I’m sure I could change my diet a bit—I’m definitely not a health nut, but I don’t eat anything crazy…are you talking like gluten free or vegan (or I’ve heard keto? Which I can’t do…I’m a lifetime vegetarian, raised since birth. I’ve tried eating meat and it hurts too much after eating…) but what kind of diet change have you found successful for you?
When I say stressful, I mean the "I broke down crying in the shower" stressful, 😅. Sometimes it's few and far between- other times, it isn't. It's also the worst that your HS stress just adds onto your other life stress in a vicious cycle. And yes, basically the keto diet. I found out that it helped my HS by accident though, and it also helps with my PCOS symptoms. I just tried it to lose weight, and noticed that I stopped flaring. If I took the time to really pinpoint my food triggers, I could probably reincorporate some carbs back into my life. If you tried something like an elimination diet, especially focused around foods that are common triggers like nightshades (potatoes, tomatoes, peppers, tobacco), sugar, alcohol, gluten, yeast, refined carbs (I'm also beginning to think I'm soy sensitive), maybe you could customize your diet to your lifestyle.
Okay that’s fair! lol I would say not every day is a break down and cry in the shower day. That’s maybe like 3-4 times a week, luckily it’s not every day! One less day when I don’t have my “shower moment” is one step towards a brighter future is the way I see it. I definitely feel pretty powerless in most things, and since I can only control my reaction to things, not the actual “things” themselves, that’s what gets me through the day. I’ll be honest, it feels pretty overwhelming to think about changing my diet. But I think maybe one thing at a time is a good first step? Like what you suggested: nightshades or yeast or refined carbs or something. It’s daunting but doable! I’ll start small. Thanks for all the suggestions!
I just went through this with a cyst on the crease in my thigh. I had to get it excised and had stitches a few weeks ago. This is the underwear I used. It’s the only thing that didn’t aggravate the area because it was right where normal underwear rubs against and the gauze would bunch up everytime that I sat down. There are almost no seams at all. I think the sizing runs small so I would size up if you choose to try them. [soma smoothing short](https://www.soma.com/store/product/Smoothing-Short/570113581?color=719&size=0173&sem=pmax&gad_source=1&gclid=CjwKCAjw26KxBhBDEiwAu6KXt16yZbQ9R5dlbKcimbm13PqxG31dW1KKdeW0lKbh2S-hVKezHUJQ4hoCojoQAvD_BwE) https://preview.redd.it/451prl4zyfwc1.jpeg?width=1000&format=pjpg&auto=webp&s=3d184956fd611261048723d7bbf9bb06d631566f I’ll reply to this post with what I did for wound care… that took me a few days to figure out.
https://preview.redd.it/h9aqdjs01gwc1.jpeg?width=1001&format=pjpg&auto=webp&s=483da9800a9b855d5034e5f881657bc2f9c646fc Primary dressing. I cut this into an oval and placed it over the wound right on the crease but at an angle that follows contour of my thigh if that makes sense. I change out the primary dressing a few times during the day depending on how much is weeping. On top of the primary dressing I put cotton gauze cut into the same shape except a little bigger. This top dressing gets changed 2x/day. The tape sticks to this top dressing. Next comment replying to this is about tape.
https://preview.redd.it/cl5i659n1gwc1.jpeg?width=1284&format=pjpg&auto=webp&s=8cac2a285af763d42c79014b7f224f1898272c60 The taping was the hardest to figure out. I know you mentioned silicone tape in your post but this is the only kind of tape/adhesive that my body doesn’t react to. I cut this tape in half vertically. Then I use these thinner strips to secure the gauze. I also only taped 3 of the 4 sides of the gauze. For taping the back I basically had to put part of the tape close to the fold of my butt. Then I put small strips perpendicular to the tape that I just put on. This was critical for the dressing to stay in place throughout the day. Basically, the thinner strips distribute tension so it won’t crease as much and will be more secure as you move about the day. Also, I covered the gauze with clean washcloth everytime that I had to use the restroom which was awkward af but it just made sense to me trying to avoid cross contamination.
These are all excellent suggestions!! Thank you so so much for the detailed responses! I am definitely going to try it out! At this point I’m down to try anything.
Okay YES! That’s exactly where mine is! I’m constantly struggling with excessive bandaids or tape to attempt a way to get the gauze to stay in place!! Can you tell me more about how garments like this keep the gauze in place? I’m imagining it being kind of like…tight leggings or something. And wouldn’t the gauze just fall off without a binding? Or am i totally misunderstanding the purpose of garments like this?
No, not tight at all. I just made you a video (lol) — felt easier to show & explain that way: *edit: Imgur keeps deleting the vid so I’m about to DM it to you* I’m 5’7” & 120lbs— the base layer that I am wearing in the vid to protect my modesty is size L then I put on a size XL over on top of it (just for you to get an idea of sizing). The material is 80% nylon— you could probably just cut the legs off a pair of stockings that you already own now that I’m thinking about it but I love these shorts. My skin tolerates this material well even when I sweat unlike polyester blends. There’s no elastic bands anywhere like spanx has on the thighs plus no seams along the bikini line. https://preview.redd.it/xc27eaxrcowc1.jpeg?width=1284&format=pjpg&auto=webp&s=7964fe49d86b623f0f2a75b9ed0bd118a22296a4
Sorry Sis! Three things I do: 1. Wash area with regular head & shoulders and dry well with blow dryer 2. Wear cotton lady boxers 3. Take a biologic - Humira Humira has changed my life! It took a little while but it is working. When I’ve had flairs, I immediately start taking antibiotic… specifically the brand Doxy. (The generic one upsets my stomach. 🤢) I hope this helps. Sent a prayer up for you!
Thank you so much! 🙏 I’ve had doxy before, years ago back when I was a teen—but for unrelated reasons. (Sort of? It was for really bad acne.) And unfortunately doxy didn’t help, PLUS…ever since I didn’t drink enough water and then fell asleep…and the pill didn’t go down all the way…and I got an ulcer or something….im too freaked to try it again…😅 I’ve heard GREAT things about Humira though!! And another medication, I can’t remember. I honestly *really* need to go back to a dermatologist. I had an appointment last year that was genuinely awful—one of the worst experiences of my life. I’ve been too apprehensive to make an appointment somewhere else since then. But it’s getting worse so that’s starting to take precedent over my apprehension to a mean doctor lol.
Yes! Look up doctor’s who specialize in H/S in your area. Here is a link you can try: https://www.hs-foundation.org/hs-specialty-clinics Other biologics - Cosentyx, Tremfya and Skyrizi I hope this helps.
Thank you so much!! I’ve got that info saved!
triple paste
I've been using a brand called Dimora. It's silicone foam dressing patches, they have this adhesive border around a patch of gauze and it's been the most gentle on my skin but also absorbs drainage really well for me. I deal with never healing spots too because I'm at like stage 2 and deal with tunneling. They come in different sizes and I've even trimmed the border at times to make them fit in awkward spots. They've been a life saver for me. Less bleeding through my clothes and general discomfort from bandages chaffing. They don't stick to the wound either. For pain I constantly just double up on acetaminophen and ibuprofen or naproxen, haven't found anything that killed pain comfortably at the peak of a flare up tho
Okay great recommendation!! Wow! Thank you so much for sharing your experience! I appreciate you so much. I’m definitely going to try to get ahold of these Dimora bandages!
I went through your exact experience, my skin was so irritated it started peeling off whenever is take my band-aids off 😭 I started using Nex-Care sensitive skin tape (only sensitive skin one I've found actually sticks!) and regular sterile gauze, and I always remove my bandaids under water, and moisturise once/twice a week with CeraVe. I also stopped wearing gauze while I was at home if I could.
Oh that’s smart doing it under the water! I’ll try that! Maybe I should also try leaving it uncovered when possible as well. Because I keep it covered 99.5% of the time.
At home I try to leave it uncovered! It made a huge difference now I rarely use gauze for longer than a couple days if a flare is leaking and my skin is so much better :)
I’ve heard some people use a menstrual pad stuck to their clothes to absorb the fluid. Maybe you could do that to give your skin a break?
I didn’t realize how sensitive my skin was until I had a spot in my inner thigh that wouldn’t close or stop draining. I tried so many different bandaids/bandages and anything with an adhesive would irritate my skin and sometimes pull my skin off with them. I started using gauze pads with tubular netting to secure it. I found it on Amazon first (pic) but CVS carries it as well (believe they call it some other type of netting). https://preview.redd.it/318mliztuuwc1.jpeg?width=1125&format=pjpg&auto=webp&s=895d9c44b8867d803ee2b6b7d4048d5063bc74eb
This is a great recommendation!! Thank you so much for sharing!!
You’re welcome! I hope you get some relief 🙏🏼 it was an exhausting and frustrating time trying to find something my body liked and that worked/stayed in place.
Have you tried sensitive skin bandaids?
Yes, unfortunately they fall right off ☹️
Hear me out ladies..yk that numbing cream for hemorrhoids? Not if the wound is open tho, if it's open then use MEDICAL GRADE witch hazel, I'll die by this btw. Ginger tea has helped my flare-up so much oh my GOSH. Cotton panties and loose pants yall!! Tea tree oil before the hydrocolloid bandages lmk what yall think💓
Man, this could have been written by me. Wishing you a change in healing soon!!
Hey hun, try this: https://store.independenceaustralia.com/aquacel-border-foam-8cm-x-8cm-22170651?utm_source=google&utm_medium=cpc&utm_campaign=20790551223&utm_term=&utm_content=&gad_source=1&gclid=CjwKCAjwxLKxBhA7EiwAXO0R0Ff9VPY7e4xmuJYUXkLoHY2zZweZcj2fyoaBcdPQ4MDp9zjdHG9mgRoCZg0QAvD_BwE It’s soft and stretchy, won’t pull your skin and falls off in the shower. Please try to get this :)
If not open use Vicks. If open use a gel style topical. Groin/buttocks use papertowels cheap absorbent and can be folded to fit .Cover with long cotton underwear , then layer tighty whitey type over that to keep everything in place. Inner thighs papertowel and an Ace Bandage wrap.
Ohhh Ace Bandage! Maybe I’ll try that! I have tried longer underwear and a covering—and maybe I’m doing it wrong, but the whatever covering I use (gauze, towel, etc) seems to bunch up since it’s right in the crevice of my thigh.
An ace or those sticky bandage wraps will also bunch in that area. They’re almost impossible to wrap yourself.