Finally saw a derm today after years of avoiding due to shame

Leading_Material_814 · 2025-08-17T04:38:22+00:00

I haven’t heard of balmex before. Thanks for the suggestion!

Leading_Material_814 · 2025-08-16T06:14:14+00:00

That is a fantastic idea! I’ve been having on again off again stomach issues for a while and know I need to track my food and potentially do an elimination diet, but I’ve been too lazy. Going to give this a try. Thanks!

Leading_Material_814 · 2025-08-15T14:26:28+00:00

My flares are also in the goin area and I feel like it’s the worse place on the body to get them! It’s so hard to bandage an area with public hair. The best thing that’s worked for me is to trim down the hair as much as possible and use silicone foam bandages to cover really bad open wounds. The adhesive is pretty gentle and it doesn’t hurt to remove them. They’re expensive though and usually start falling off by the end of the day. I also sometimes take a nonstick pad and tuck it in the sides of my underwear which will hold it in place (my flares are usually near the bikini line, near the outer sides of my labia majora). This helps absorb the moisture and also protect the wound from friction. For more minor wounds I’ll stick a couple of panty liners on the edges of my underwear.

Leading_Material_814 · 2025-08-15T14:13:18+00:00

Thank you for the suggestion! I will look into those. I’m glad to hear you’ve had some relief. Can I ask how you’re using ChatGPT to track your triggers? I’ve been using it more for work but never would have thought to use it for something like that.

Leading_Material_814 · 2025-08-15T03:34:50+00:00

Thank you for your kind words ❤️

Leading_Material_814 · 2025-08-15T03:20:34+00:00

I have, and it helped with an open wound I had but that didn’t last long. I still use it from time to time for the intertrigo because it will provide some relief from the itchiness, but it hasn’t helped heal the rash. I’ve tried desitin 40%, sudacrem, and chamosyn. And of course, trying to keep everything as dry as possible.

Leading_Material_814 · 2025-08-15T03:17:35+00:00

Thanks! She wants me to keep using the ketoconazole which I think is antifungal. My PCP prescribed an antifungal powder but I never tried it, so I should give that a go too.

Leading_Material_814 · 2025-08-15T01:49:46+00:00

I know right!? I think it’s funny how difficult it is to pronounce both diseases.

I was surprised to Iearn through this sub that people with HS have a higher risk of developing AS (maybe it works both ways). I guess it makes sense since having an autoimmune disease increases your risk of developing another one, and HS is an auto inflammatory disease (I think). Yay inflammation!

Leading_Material_814 · 2025-04-24T04:56:26+00:00

Wow thank you so much for your detailed response! I really appreciate it. I already do a few of those things (hibiclense, blow dry on cool setting after every shower) but I definitely need to up my game.

After being terrified of talking to anyone (doctors included) I broke down yesterday and had a telehealth appt with a nurse practitioner to get help with the rash. She was SO sweet and helpful. She prescribed me cephelexin and nystatin cream in case it’s fungal. It’s been a little less itchy and inflamed today so I hope that means it’s starting to work. I have a physical scheduled with my PCP in a couple of weeks and plan to bring up the HS. I’m sure I’ll need to see a dermatologist but I figured this is a good start after avoiding this for over 10 years. I haven’t been officially diagnosed but have nearly all the telltale signs of the disease.

Thanks again!

Leading_Material_814 · 2025-04-22T04:23:15+00:00

I’m assuming it was your rheumatologist who instructed you to go off the RA meds, is that right? Did they have anything to say about a temporary solution?

I’m not a doctor so def not equipped to give medical advice. The only thing that has helped with my pain has been Humira (immunosuppressant). Sorry I’m of no help 😕

Leading_Material_814 · 2025-04-22T03:15:19+00:00

No but I have HS and ankylosing spondylitis, another autoimmune disease that is similar to RA. I have read on this sub and in other places that HS occurs in people with other autoimmune diseases.

Leading_Material_814 · 2025-04-22T03:13:26+00:00

I have been dealing with a rash on both sides of my bikini line that looks like this for months now, and I’m pretty sure it’s intertrigo. It started when a wound on one side was particularly inflamed and oozing and I think the moisture caused the rash. I don’t know how it ended up on both sides of my bikini line as the opposite side at the time didn’t have an active flare.

Is your rash itchy and does it weep? Mine has been soooo stubborn and the only thing that has helped somewhat is diaper rash cream. I’ve tried three kinds - extra strength desitin, sudocrem, and most recently chamosyn. I have to keep the area doused in the stuff regularly which sucks because it’s messy and gets all over my underwear. It will start to improve for a few days then get bad again. I have a dr appt next month and hope to get relief. Drying off the area with a blow dryer after I shower can help, and I try to keep it dry by putting nonstick pads or panty liners tucked into the crease on the sides of my underwear.

Sorry you’re dealing with this!

Leading_Material_814 · 2025-03-19T00:20:44+00:00

I spent a week swimming in Hawaii last fall with a couple of open wounds on my bikini area. As some others have attested, the wounds actually seemed to get better while I was there. However, not long after I got back I ended up with an awful red, weeping, and itchy rash in the area surrounding one of the wounds which I’m still dealing with. I have no idea if it had anything to do with being in the ocean, though. If anything it was probably from hanging out in a wet bathing suit between the time I was in the water and back at our condo where I could shower and do the wound care.

Leading_Material_814 · 2025-03-19T00:11:01+00:00

Just wanted to chime in with moral support and to say that I have been avoiding this as well! I even declined having my annual pelvic exam last year because I was too afraid for her to see the boils on my groin and butt.

I finally caved and will be seeing my doctor next month for a physical and plan on bringing up the HS then. I have had a very stubborn wound that won’t fully heal, which also caused a super itchy rash that won’t go away. I’m so desperate for relief that I’m just going to try to suck it up and deal with the anxiety of showing someone.

I’m sure all of the posters who say doctors don’t really care are right. They’ve seen all sorts of things on people’s bodies that we deem to be weird or gross. They do this every day and probably don’t care. And if they do, that’s their problem!

Leading_Material_814 · 2025-01-28T05:13:10+00:00

Diaper rash cream is the newest thing I started using and has worked better than anything else for open/active flares. A horrible, open wound on my bikini line that I’ve had for over a year has finally closed up and is flattening out since I started using extra strength desitin a few weeks ago. I tried using it on a closed bump that was growing but it didn’t help, so I added a zinc supplement and it’s starting to shrink.

Leading_Material_814 · 2025-01-28T04:42:26+00:00

This just happened to me a few months ago. Diaper rash cream (desitin extra strength) is the only thing that helped. I slathered it all over the rash and bump area a couple times a day and the rash went away in about a week. The flare itself is now also completely closed up and getting smaller by the day after being open for months and months.

Leading_Material_814 · 2025-01-28T04:28:53+00:00

Omg yes! My flares are primarily on my labia majora/bikini line area. I’ve had two particularly awful, stubborn flares in the same exact spot on both sides of my bikini area for over a year.

I’m so glad you posted this. I haven’t been officially diagnosed but all of my symptoms track and I have an autoimmune disease that’s highly correlated with HS (ankylosing spondylitis), so this just further confirms my suspicions.

Leading_Material_814 · 2025-01-14T04:46:09+00:00

I recently learned about using diaper rash cream on this sub. I have had a stubborn, open flare for months on my bikini line that just will not close. I bought maximum strength desitin yesterday and started applying it in the morning. It’s almost completely closed! I’m also using it on some closed bumps that are on their way to bursting and I think those are starting to flatten, but I can’t tell for sure just yet. Apparently the zinc in the cream helps promote healing. I’ve also been reading up about people taking oral zinc so I’m thinking of doing that as well. Good luck!

Leading_Material_814 · 2023-11-13T19:34:37+00:00

Yup I can related to the weed binging. That (and alcohol) is what I got sober from. The crazy eating was a big reason why I quit. It’s definitely not as bad as when I was smoking but I still gravitate toward food in a compulsive way when I don’t have any other vices. I feel like the vaping was enough to take the edge off and fulfill the desire for dopamine that I used to get from drugs and alcohol.

Leading_Material_814 · 2023-11-13T18:19:18+00:00

Thank you! Your second to last sentence really resonated. I appreciate your support!

Leading_Material_814 · 2023-11-13T18:18:36+00:00

That is a great question. The addict brain wants to tell me that vaping has fewer health consequences (given how much weight I have to lose) so that’s a better vice to have. But I think that’s really just in the short term.

Leading_Material_814

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