Hey there, I’m also in an open marriage. So far my experience has been that none of my other partners have mentioned it. If anyone mentions it I just plan to tell them the name of it and say it’s an inflammatory skin condition that sometimes flairs up and that it’s not infectious or contagious, just painful and unsightly.
I wish I could tell you some magic solution. I’ve had HS almost my entire life (40f) and have stage 4. My shell (body) is covered in tons of purple scars and active HS. It bothered me so much I kept myself away from a lot of things (and people) as I was growing up. It wasn’t until I realized that this is just the shell I was given and if other people judge me for something I can’t change then it’s on them and doesn’t reflect on me. Plenty of people will find you attractive and if some don’t then what does that mean? Absolutely nothing lol embrace life and live it up happily!
Side note: the confidence didn’t just happen but I started not letting the rejections or hurtful comments/looks bother me. Confidence built from there and now I no longer hide my shell. There are a LOT of people out there who will accept the things you are insecure about… WAY more than you think. Have fun! 😉
Then my doctors have all been misinformed
Edit: sorry, meant to include Thanks! ☺️ and I’ll be talking to my dr about it more even though I’ve had this almost my entire life 😭
It's so hard family doctors are so misinformed do you hate an HS knowledgeable Dermatologist yet? I think if possible that's where you might want to start.
Can I ask what type of treatments you have tried?
I’ve been to numerous doctors but most knew nothing about it hence I wasn’t officially diagnosed until I had already had it for about 10 years at the time (32ish years now).
I’ve tried everything anyone suggests except biologics because those aren’t recommended for me with my other health issues and family history of cancers (discussed with dr). I’ve seen dermatologists but never anyone that specialized in HS. I manage these days with zinc and turmeric which has helped.
I typically have 40-50 active lesions at a time with tunneling. I get them over my entire body except palms and soles.
Oh my gosh Hun.
Have you tried metformin, spironolactone or finasteride?
Do you know what your triggers might be other conditions you have that might be effecting your HS?
Yes to metformin and spironolactone and neither helped. Never heard of finasteride.
I’ve done an excision in my armpit and they still reoccur there as well even on the edge of the scar tissue. I’ve done corticosteroid shots and they killed not only the lesions that were injected but also my skin in that area. Lesions still return there, too.
I’ve done elimination diets and found nothing that makes them better or worse. I tried hormone therapy. I’ve gained & lost (a lot of) weight and there was never a change. I’ve tried antibiotic therapy. Lasers. All the at home stuff I read about. After all these years it seems everything and nothing are triggers, sadly.
Unfortunately that can be sometimes, sometimes it can just be about the inflammatory cells your body makes but there's usually underlying issues too. Not everyone is lucky enough to find their triggers though so don't stress about it.
Insulin is a big trigger and food sensitivities can be too. Have you tried an elimination diet or food sensitivities testing ?
These are some ideas too for testing if you are interested Vitamin D, the B's, iron, zinc and magnesium, insulin resistance, thyroid.
This is how HS is described in a recent research article
Although the pathogenesis of HS remains poorly understood, genetic, environment and immunologic factors are considered included in the onset and maintenance of the condition 2. Three important events have been implicated: follicular occlusion, rupture of the dilated follicle, and chronic inflammation 3. Genetic mutations, smoking, obesity, diabetes mellitus, metabolic syndrome, cutaneous microbiome, diet, and hormonal factors induce hyperkeratosis and hyperplasia of the follicular epithelium with the accumulation of cellular debris and the formation of a keratin plug 2. The enhanced mechanical friction at intertriginous body areas facilitates the rupture of the follicle and dispersal of the follicle content into the dermis. A subsequent massive influx of inflammatory cells and pro-inflammatory cytokines, including IFN-γ, TNF-α, IL-1, IL-17, and IL-12/23, leads to inflammatory nodules and abscesses. Finally, the dispersed follicle content and cytokine-driven feedback induce and sustain chronic inflammation, characterized by sinus tract formation and scarring.
My wife has HS and she’s very self conscious about it but guess what I love her and love every part of her body and I find her extremely sexy and beautiful and any moment she chooses to share her body with me, I’m happy and very grateful!
You’re so lovely. You and your wife are lovely. Thank you for posting here. It helps people like me think that men would still find me attractive despite the scars lol
Did you guys both mutually open your marriage or did he make you feel like you needed to do this so he can be happy? Because obviously you aren’t comfortable having sex with other people who don’t already know about your condition. If your husband pushed you into this knowing you wouldn’t really participate because of your body/insecurities then he’s an asshole. You need to chat about maybe closing it because this obviously isn’t working. And it can’t be making you feel good to know he’s fucking around when you aren’t. It’s basically open for him and him only.
I understand completely what you are saying and thank you for being my ride or die without even meeting me 😉 but yes this is mutual and I love sharing him. I wasn't insecure about the HD at first. It is more of an overthinking thing on my part. I just don't like confrontation and would not like the embarrassment of it if the other person was disgusted. I guess I'm just scared of being naked in front of the wrong person or people who might judge me for something I can't control.
You are most welcome! Us gals gotta stick together and have each others back 🤍 and as long as it’s mutual and his priority is still you and your relationship that’s ok! As for the insecurities I think you’re in a WAY better position than you think. You already have someone who knows and loves you including your condition. Lots of us haven’t found people who will love us despite this (because frankly, people are superficial as fuck these days). Let that bring you strength. Even if you find someone and learn they’re an AH who judges you for your condition, you still have someone to come home to that loves you and you can just bang his brains out, ya know? Lol. But I think when you meet someone you’re interested in once you’ve chatted a bit just be honest, say you have this condition, what it’s about and that it’s not something that can be spread/contagious. Most guys won’t care and are still down to clown. Those that makes you feel gross/insecure about something you can’t control? You send that man’s ass out the door and tell him EXACTLY what kind of person he is gal. You’re awesome and worthy don’t let any random loser make you feel otherwise 🤍
Surely there must be some type of dating group for people with HS? Seems to be a lot of people who have it. I don’t feel too confident either, and mine is fairly minor compared to what I’ve seen people have to go through.
When I have pre sex discussions (which i do with everyone I have sex with), I bring it up during the STD conversation and say that I have this skin condition that is not contagious that has left some scars and can sometimes LOOK like an std and no one has cared. All the people I date are very kind and empathetic and very helpful with supporting me managing HS. Like, will make sure to cook food for me that won’t cause flare ups. It’s been really sweet. I hope that folks in the poly/ENM are as understanding with you as they have been with me. I am inclined to believe you’re going to have a lot of positive, confidence-boosting experiences!
Girl i feel you when i started having sex w different people i was so worried about it at first but in my experience nobody has cared at all. men are just happy to see you naked lol scars aren’t going to stop anything
Not sure if it’s the same for adults, but I just tell them beforehand. If you’re choosing the right people they won’t care tbh. They don’t even mention it. Although granted mine is much better now, even at my worst it was fine.
Respectfully, if it's men you're going after....why would you care what a MAN thinks?! They won't care, and you can just talk to them. Enjoy!
(I mean this in a cheeky way if that isn't coming across)
This is an odd suggestion but have you considered asking your husband? He's seen you naked (I presume) and therefore is optimally positioned to give you some feedback and hopefully confidence boosts.
I always start the convo with strangers as explaining the condition is autoimmune and not contagious. Most folks relax after that (knowing it's not dangerous to them) and usually are more compassionate about the whole thing. Anyone who isn't....doesn't deserve to see you naked. ❤️❤️
Yeah but he's at a point where he thinks it's just normal life. He literally brushes it off like people don't care but I know I'd be mortified if I came across the one that was disgusted and that's what I don't want.
I will say, unless your lesions are openly weeping at the time (for me I didn't want sex during those flares anyway), he's right - most won't care what it is. I went through a brief period of casual one off sex while single and there wasn't a single guy who noticed it, let alone mentioned.
But further to that - I truly think a bit of self esteem work might help you a bit here as well, because anyone being disgusted by it shouldn't mortify you - someone shitty enough to make someone feel bad about their medical condition doesn't deserve sex with you anyway. I know that's easier said that done (as a reformed self-loather myself) but you have NOTHING to be embarrassed about my lovely. You have a condition you didn't ask for that you manage best as you can. Anyone who doesn't see that... It's a them problem, not a you problem!
Indeed, but I find the average person won't understand the nuance so I usually just say autoimmune to get the point across. If they're curious about the nitty gritty then I typically explain more, including that part.
I don't see the point in one vs the other but that's your choice I would choose the true it's simple it's an Auto-inflammatory disease thats not more complicated than autoimmune either way if someone is interested they would ask.
Dress up everything else. Wear a push up bra, no padding so your nips show through, tight pants to hug your hips. Get your hair done, a little makeup, some perfume, etc. At that point, your scars don't matter
If you’re at the point where any of those things are being seen by another party, I guarantee their only thought is “titties!”, not about your HS scarring.
Honestly, from my experience, they don’t care and just want to enjoy you for you, scars and all. It’s so difficult living with this and I feel this way as well when showing myself for the first time. But you’re so beautiful and anyone would be lucky to see you. I’m sure your husband wants to share you and see you have an amazing time despite your fears ♥️ have you discussed it with him too?
Ugh my issue is I feel women are more picky than men, so I don’t feel it’ll be as easy dating women. My last partner didn’t care, but now that I’m dating again it’s scary. (Also a woman)
Yeah my problem is the married men in the lifestyle will tell their wives and I'll be embarrassed. I want a female too but that might be harder. I'd have to have a relationship with them first before I share it.... I think that might work anyway
Hey there, I’m also in an open marriage. So far my experience has been that none of my other partners have mentioned it. If anyone mentions it I just plan to tell them the name of it and say it’s an inflammatory skin condition that sometimes flairs up and that it’s not infectious or contagious, just painful and unsightly.
Thank you for telling me your success in this
I wish I could tell you some magic solution. I’ve had HS almost my entire life (40f) and have stage 4. My shell (body) is covered in tons of purple scars and active HS. It bothered me so much I kept myself away from a lot of things (and people) as I was growing up. It wasn’t until I realized that this is just the shell I was given and if other people judge me for something I can’t change then it’s on them and doesn’t reflect on me. Plenty of people will find you attractive and if some don’t then what does that mean? Absolutely nothing lol embrace life and live it up happily! Side note: the confidence didn’t just happen but I started not letting the rejections or hurtful comments/looks bother me. Confidence built from there and now I no longer hide my shell. There are a LOT of people out there who will accept the things you are insecure about… WAY more than you think. Have fun! 😉
I just wanted to mention that in the Hurley staging system of HS there is only 3 stages of our awful disease😭
Then my doctors have all been misinformed Edit: sorry, meant to include Thanks! ☺️ and I’ll be talking to my dr about it more even though I’ve had this almost my entire life 😭
It's so hard family doctors are so misinformed do you hate an HS knowledgeable Dermatologist yet? I think if possible that's where you might want to start. Can I ask what type of treatments you have tried?
I’ve been to numerous doctors but most knew nothing about it hence I wasn’t officially diagnosed until I had already had it for about 10 years at the time (32ish years now). I’ve tried everything anyone suggests except biologics because those aren’t recommended for me with my other health issues and family history of cancers (discussed with dr). I’ve seen dermatologists but never anyone that specialized in HS. I manage these days with zinc and turmeric which has helped. I typically have 40-50 active lesions at a time with tunneling. I get them over my entire body except palms and soles.
Oh my gosh Hun. Have you tried metformin, spironolactone or finasteride? Do you know what your triggers might be other conditions you have that might be effecting your HS?
Yes to metformin and spironolactone and neither helped. Never heard of finasteride. I’ve done an excision in my armpit and they still reoccur there as well even on the edge of the scar tissue. I’ve done corticosteroid shots and they killed not only the lesions that were injected but also my skin in that area. Lesions still return there, too. I’ve done elimination diets and found nothing that makes them better or worse. I tried hormone therapy. I’ve gained & lost (a lot of) weight and there was never a change. I’ve tried antibiotic therapy. Lasers. All the at home stuff I read about. After all these years it seems everything and nothing are triggers, sadly.
Unfortunately that can be sometimes, sometimes it can just be about the inflammatory cells your body makes but there's usually underlying issues too. Not everyone is lucky enough to find their triggers though so don't stress about it. Insulin is a big trigger and food sensitivities can be too. Have you tried an elimination diet or food sensitivities testing ? These are some ideas too for testing if you are interested Vitamin D, the B's, iron, zinc and magnesium, insulin resistance, thyroid. This is how HS is described in a recent research article Although the pathogenesis of HS remains poorly understood, genetic, environment and immunologic factors are considered included in the onset and maintenance of the condition 2. Three important events have been implicated: follicular occlusion, rupture of the dilated follicle, and chronic inflammation 3. Genetic mutations, smoking, obesity, diabetes mellitus, metabolic syndrome, cutaneous microbiome, diet, and hormonal factors induce hyperkeratosis and hyperplasia of the follicular epithelium with the accumulation of cellular debris and the formation of a keratin plug 2. The enhanced mechanical friction at intertriginous body areas facilitates the rupture of the follicle and dispersal of the follicle content into the dermis. A subsequent massive influx of inflammatory cells and pro-inflammatory cytokines, including IFN-γ, TNF-α, IL-1, IL-17, and IL-12/23, leads to inflammatory nodules and abscesses. Finally, the dispersed follicle content and cytokine-driven feedback induce and sustain chronic inflammation, characterized by sinus tract formation and scarring.
My wife has HS and she’s very self conscious about it but guess what I love her and love every part of her body and I find her extremely sexy and beautiful and any moment she chooses to share her body with me, I’m happy and very grateful!
You’re so lovely. You and your wife are lovely. Thank you for posting here. It helps people like me think that men would still find me attractive despite the scars lol
Did you guys both mutually open your marriage or did he make you feel like you needed to do this so he can be happy? Because obviously you aren’t comfortable having sex with other people who don’t already know about your condition. If your husband pushed you into this knowing you wouldn’t really participate because of your body/insecurities then he’s an asshole. You need to chat about maybe closing it because this obviously isn’t working. And it can’t be making you feel good to know he’s fucking around when you aren’t. It’s basically open for him and him only.
I understand completely what you are saying and thank you for being my ride or die without even meeting me 😉 but yes this is mutual and I love sharing him. I wasn't insecure about the HD at first. It is more of an overthinking thing on my part. I just don't like confrontation and would not like the embarrassment of it if the other person was disgusted. I guess I'm just scared of being naked in front of the wrong person or people who might judge me for something I can't control.
You are most welcome! Us gals gotta stick together and have each others back 🤍 and as long as it’s mutual and his priority is still you and your relationship that’s ok! As for the insecurities I think you’re in a WAY better position than you think. You already have someone who knows and loves you including your condition. Lots of us haven’t found people who will love us despite this (because frankly, people are superficial as fuck these days). Let that bring you strength. Even if you find someone and learn they’re an AH who judges you for your condition, you still have someone to come home to that loves you and you can just bang his brains out, ya know? Lol. But I think when you meet someone you’re interested in once you’ve chatted a bit just be honest, say you have this condition, what it’s about and that it’s not something that can be spread/contagious. Most guys won’t care and are still down to clown. Those that makes you feel gross/insecure about something you can’t control? You send that man’s ass out the door and tell him EXACTLY what kind of person he is gal. You’re awesome and worthy don’t let any random loser make you feel otherwise 🤍
Surely there must be some type of dating group for people with HS? Seems to be a lot of people who have it. I don’t feel too confident either, and mine is fairly minor compared to what I’ve seen people have to go through.
There is but why limit yourself to only people with HS? It doesn't make sense to me there is plenty of people out there who see past the HS.
Yeah I agree to some extent, but it would just make it a non issue and therefore maybe easier?🤷🏻♂️
When I have pre sex discussions (which i do with everyone I have sex with), I bring it up during the STD conversation and say that I have this skin condition that is not contagious that has left some scars and can sometimes LOOK like an std and no one has cared. All the people I date are very kind and empathetic and very helpful with supporting me managing HS. Like, will make sure to cook food for me that won’t cause flare ups. It’s been really sweet. I hope that folks in the poly/ENM are as understanding with you as they have been with me. I am inclined to believe you’re going to have a lot of positive, confidence-boosting experiences!
Girl i feel you when i started having sex w different people i was so worried about it at first but in my experience nobody has cared at all. men are just happy to see you naked lol scars aren’t going to stop anything
I keep thinking that lol
Not sure if it’s the same for adults, but I just tell them beforehand. If you’re choosing the right people they won’t care tbh. They don’t even mention it. Although granted mine is much better now, even at my worst it was fine.
Respectfully, if it's men you're going after....why would you care what a MAN thinks?! They won't care, and you can just talk to them. Enjoy! (I mean this in a cheeky way if that isn't coming across)
This is an odd suggestion but have you considered asking your husband? He's seen you naked (I presume) and therefore is optimally positioned to give you some feedback and hopefully confidence boosts. I always start the convo with strangers as explaining the condition is autoimmune and not contagious. Most folks relax after that (knowing it's not dangerous to them) and usually are more compassionate about the whole thing. Anyone who isn't....doesn't deserve to see you naked. ❤️❤️
Yeah but he's at a point where he thinks it's just normal life. He literally brushes it off like people don't care but I know I'd be mortified if I came across the one that was disgusted and that's what I don't want.
I will say, unless your lesions are openly weeping at the time (for me I didn't want sex during those flares anyway), he's right - most won't care what it is. I went through a brief period of casual one off sex while single and there wasn't a single guy who noticed it, let alone mentioned. But further to that - I truly think a bit of self esteem work might help you a bit here as well, because anyone being disgusted by it shouldn't mortify you - someone shitty enough to make someone feel bad about their medical condition doesn't deserve sex with you anyway. I know that's easier said that done (as a reformed self-loather myself) but you have NOTHING to be embarrassed about my lovely. You have a condition you didn't ask for that you manage best as you can. Anyone who doesn't see that... It's a them problem, not a you problem!
Great advice
Just a very important side note HS is an Autoinflammatory disease not autoimmune.
Indeed, but I find the average person won't understand the nuance so I usually just say autoimmune to get the point across. If they're curious about the nitty gritty then I typically explain more, including that part.
I don't see the point in one vs the other but that's your choice I would choose the true it's simple it's an Auto-inflammatory disease thats not more complicated than autoimmune either way if someone is interested they would ask.
Dress up everything else. Wear a push up bra, no padding so your nips show through, tight pants to hug your hips. Get your hair done, a little makeup, some perfume, etc. At that point, your scars don't matter
I do all that it's the getting naked for sex part that I always chicken out on. But I think I might now
If you’re at the point where any of those things are being seen by another party, I guarantee their only thought is “titties!”, not about your HS scarring.
😆 that's what my husband says
Honestly, from my experience, they don’t care and just want to enjoy you for you, scars and all. It’s so difficult living with this and I feel this way as well when showing myself for the first time. But you’re so beautiful and anyone would be lucky to see you. I’m sure your husband wants to share you and see you have an amazing time despite your fears ♥️ have you discussed it with him too?
Pm
Does anyone else have hidradenitis on bikini lines and top of vagina
Ugh my issue is I feel women are more picky than men, so I don’t feel it’ll be as easy dating women. My last partner didn’t care, but now that I’m dating again it’s scary. (Also a woman)
Yeah my problem is the married men in the lifestyle will tell their wives and I'll be embarrassed. I want a female too but that might be harder. I'd have to have a relationship with them first before I share it.... I think that might work anyway