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Thu, Feb 28 9:59pm · Hidradenitis suppurativa in Skin Health

I had a thick cyst on my neck that broke open like the sores and got bigger and bigger till it was the size of a lemon. I'm not completely sure if it was part of the HS or just a huge cyst but I did have that surgically removed from the dermatologist and he promised me that he was good at it and no one had gotten a cyst like that back again that he had removed and so far so good … it hasn't returned. But I really think it wasn't in the HS family but just a sebaceous cyst. The only surgery that is out there to remove all the sores is to remove the sweat glands. But the dermatologist refused to do that because it opens you up to cancer. So I ruled out surgery for the HS. I have to say though that by the time I knew what it was that I had … I was in stage 3 of the disease … way past the time when much at all can help. I have tunnels under the skin and places where I've had sores on top of sores and my groin area and arm pits are a disaster area. I can't wear tops without sleeves … but short sleeves do cover it. No tank tops or anything like that and I can't stand layering because it just makes me more hot.

Thu, Feb 28 11:22am · Hidradenitis suppurativa in Skin Health

I have them on my vagina as well and you can't even cover them when they happen. I live in North Carolina and all the specialists and my own wonderful family doctor can't fix it. It's an incurable disease and nothing that I've found over all my years takes it away and trust me I've tried everything under the sun that they proposed. Nothing cures it. I wish I could help you but have suffered with HS for over 45 years now and I'm here to listen or tell you something that kinda helps me deal with it and your family doctor can prescribe it. My heart goes out to you because I really do understand.

Thu, Feb 28 11:16am · Hidradenitis suppurativa in Skin Health

Midnight (@midnight) if you look at the posts above and read those written by me, you'll see that I've had this disease since puberty and was unaware of it till about 20 years ago when a OBGYN pointed out to me what it was and showed me in the book that I was a classic case of it. Read through my posts and if you have any questions, I'd be glad to talk to you about it. I've had every treatment that i know of out there and some might appear to give relief but it onlu comes back. I refuse to get surgery because my dermatologist refuses to start that process because it just leads to other surgeries. There is no cure if you have HS and not just adult acne, and no matter what is done, it comes back somewhere else. The best you can do is learn to deal with it unfortunately and there is an antibiotic cream I use that helps heal the sores and takes the pain away as best it can. I get the sores everywhere, and I mean everywhere. And the depression and pity parties just happen …. when you have this disease because it's so limiting. Send me a post with any questions and I'd be glad to tell you all that I've been through … I'm 63 now and it's a constant battle.

Nov 2, 2018 · Hidradenitis suppurativa in Skin Health

@contentandwell None that don't cost an outrageous amount to go to and aren't covered by my insurance and I only know of one. I also know of a few that have gone to her and their treatments aren't helping at all. My dermatologist told me that it would require me to have my sweat glands removed and he said he would not perform that surgery because of the dangers it opened me up to. And then he wanted to put me back on the pill (post menopausal/husband had prostate cancer twice, surgery and radiation) … can we say it would be the immaculate conception if I were to get pregnant ……. in order to do a new treatment and in researching that treatment and women in my age bracket, it was scary what was happening to these women in other organs as a result of the treatment so I decided I'd rather deal with a disease at least I know something about than to head into the unknown with poor results. 🙁

Oct 31, 2018 · Hidradenitis suppurativa in Skin Health

@contentandwell Thanks so much for your compassion and encouragement. I looked up the percentage on those suffering from HS and the only percentage I found was put out in 2007 ~ HS affects at least 1% possibly 4% of the global population. I'm sure that has changed since 2007 but still don't think it's a large percentage. And I noticed that it said it rarely affects people past 55 and I'm 63 and it's alive and well in me. But I tend to be in the "rare" stage … haha I tried Dreft and wasn't able to use it. The only soap I've found that I can use on my skin is Unscented Dove, and then Arm and Hammer's Oxi Clean on my clothes. I'm post menopausal but the PCOS still plays a part in it which surprised me. My primary care doctor feels so badly for me because he can't help me but occasionally he puts me on an antibiotic that helps clear up obstinate ones and it does help, just doesn't always work on the more invasive ones. So basically when you have a disease like this with no cure, you learn to live with it and press forward and thank God that it's not worse. I choose the high road, but not to say that there aren't days when it gets the best of me and I do feel sorry for myself. Thanks for responding and caring!! 🙂

Oct 30, 2018 · Hidradenitis suppurativa in Skin Health

Hi @peabody88 and JK, Volunteer Mentor:

The thing about HS is that it is like acute acne, and has other names because it's misdiagnosed a lot. That was my problem, because for years the doctors called it (and even dermatologists) so many other things and I didn't know what I really had until I was already in stage 3 of the skin disease. I wish I had known so much sooner because then I might have found more solutions sooner to make it less painful to deal with. I was told that I was born with HS and that it probably came down through the genes from someone in the family (my mom) and there was really no cure, just things that could help me deal with it and make myself more comfortable. Sometimes the sores don't even come to a head, they just go away. Other times they fester and break and either bleed, have pus, or both and they always take a while to heal. Over the years I've gotten tunnels under the skin because I've gotten them over and over again in the same places, and it's just the nature of the disease to run tunnels under the skin. I have diabetes (but I'm under control without insulin and just pills and a shot weekly) and I didn't have diabetes till recently. I actually was hypoglycemic for many years. I do have PCOS, had difficulty with periods and getting pregnant and sustaining the pregnancy (had 2 miscarriages but 2 successful pregnancies), and I had hormonal imbalances. I was told that HS does contribute to the other health issues and they affect the HS as well. All I know is what I've learned over the years that helps the painfulness of the sores and how to hopefully keep from getting staph infection along the way. It's a difficult disease to even talk about because it's embarrassing, has an odor to it at times, and can very easily keep you home and not want to go anywhere. So you have to look for that silver lining every day so you don't become a hermit. I'm always around if any of you just need to talk. I've been told it all, tried it all, and pray daily that they'll find a cure. 🙂

Oct 14, 2018 · Hidradenitis suppurativa in Skin Health

I haven't written in a while and I apologize for that. Sometimes talking about it makes it more depressing for me since it's a daily battle in my life and I'm never clear of it and always in pain with the sores. If any of you haven't read my initial post, it's back on November 7, 2012 and I've had Hidradenitis Suppurativa since puberty but did not know what it was till about 20 some years ago. Doctors called it acute acne or some other names that really don't matter now. I've had the sores lanced, had surgery on them, and then just let them run their course and in every case, the sores come back because they have a tendency to create tunnels under the skin and they pop up every where and even where you've just had a sore so you get those, "what I call", ungodly bumped up purple scars. I'm 63 now and I have to say that the older you get, the more you get of them and in areas that cannot be bandaged or even antibiotic ointment put on. I'm post menopausal and I was hoping they would get better but I'm here to tell you they have not. The ointment that I've been prescribed by my family doctor who is wonderful an empathizes with me and this disease, is Mupirocin Ointment USP, 2% and it really does help and takes a good bit of the pain out of the sore as it goes through the process of either healing or opening up and draining and healing. I HIGHLY recommend it if you can get your doctor to prescribe it for you. This isn't a condition that is going to go away. If you are born with it, you are stuck with it because it's genetic and I got it by way of my mother. I have a daughter who has had just a few over the years and hers have cleared up nicely and I got her to use the cream for getting rid of scars and they've made them almost invisible. She doesn't have it like I did at her age and I doubt she ever will because hers isn't progressing like mine did. You'll get some that just come and go without rupturing and draining and then you'll get those that don't leave until they've ruptured and drain and I've had them all sizes from a "pea" size to the size of a "lemon" and I'm not exaggerating in the slightest and when that one festered up, I had layers of skin to slough off from the fever that was in it. I've had staph infection to set into some of them but never mrsa so do be very careful with them. If you get any that are very large, it's best to go to the doctor and get on an antibiotic to prevent it. I try not to use antibiotics too often because I don't want them to stop working. Right now I'm on Doxycycline because I've had so many that I felt my body needed to be flushed out. I'm also allergic to sulfur so that eliminates a lot of antibiotics that I cannot take that would hep the sores as well. There's no easy fix, you just have to find what works best for you. I've done all the soaps, creams, even did shots that were supposed to help and finally was told that removing the sweat glands was the best option and the dermatologist wouldn't do that because it opens you up to the possibilities of cancer developing. I do my best to stay out of the heat so I am inside a lot in air conditioning because the more I sweat, the more sores I get even if skin isn't touching other skin … they just come out of nowhere it seems. There's no other way to say it but to say, it's a never ending battle, and I really do empathize with any of you that suffer from this disease, because it's no fun whatsoever. Do look into the ointment I mentioned above because it really does help me. AND if you have difficulty with bandaids or bandages like I do, I can recommend 3M Medipore +Pad Soft Cloth Adhesive Wound Dressings 3.5" x 4" and I also use the 3 1/2 x 8 size as well. My skin is very sensitive and they don't irritate the skin around the sores or pull or tear at the healthy skin. They are the only bandages that I can use. I also quit using Tide detergent because it's very abrasive (was told to stop using it by the dermatologist) and I use Dove soap in the bathroom and Arm and Hammer Oxi Clean laundry detergent. If ANY OF THIS helps you, I'll be so happy, or if any of this information helps in the least. I've had HS for over 50 years now so I have 50 years of experience that I'd be glad to share in any way I can. Happy days to you folks with less days with sores rather than more days.

Jan 9, 2017 · Hidradenitis suppurativa in Skin Health

Hoping that you get the results you desire from the surgery and that Dr. Otley is able to give you relief. I think all of us that have HS, all we really want is relief and just not as many sores, or none at all. I’ll be watching your progress throughout your surgeries to see how it works for you and wish you the best!!! 🙂