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Old 12-02-2010, 11:09 AM
5 posts, read 48,167 times
Reputation: 15


You are very lucky to have a mand that is supportive. I do not have one becasue of the fact of this disease. What really stinks is that when you are attracted to someone, and I turn them down, they want to know why. Men are so visual, if these guys got one glimpse of what it looks like, they would bolt. Good luck with your surgery. The next one I have is for the groin area, so I can start dating again, and I hope and pray to god that it goes as well as the surgery did on my arms.
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Old 12-08-2010, 03:25 PM
2 posts, read 18,344 times
Reputation: 10
I know I am very lucky, he is the best man ever, although he saw me before this had taken over my body, he still praises me on how beautiful I am even though my underarms and groin look like something out of a scary movie. So you did have good luck with the arm pit surgery? I will pray that your surgery goes awesome as well! No one deserves this hell especially going at it alone. I just got a appt. with the Cleveland Clinic on Monday....so if they suggest something new or I get any good, new advice I will let you know. I decided I would see this one last derm. before I see the surgeon. Good Luck! And my husband and I will both send lots of prayers your way.
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Old 12-17-2010, 10:36 AM
5 posts, read 48,167 times
Reputation: 15
Thank you, and yes if the Derm you are going to see has somethign to make it tolerable or at least maintain it. Let me know.
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Old 02-22-2011, 03:58 PM
1 posts, read 7,016 times
Reputation: 11
I am so sad and discouraged that there is no cure for this. I'm 38 and have had it for the past 20 years, exclusively on my groin and inner thighs. For a long time I had considered myself lucky that it hadn't appeared on my armpits or breast area, but now I'd almost rather that, because now they're invading my privates. My inner and outer labia are covered in them, some small, but most quite large and swollen. Some days I can't walk, it always hurts to wipe after going to the washroom, and I haven't let a man anywhere near me for over 3 years. I've tried everything, and my doctor says surgery won't work because there are too many areas affected down there, they'd pretty much have to remove everything, and they won't do that. (not that I'd want them to!) It's impossible to keep them dry and keep air circulating, short of propping myself up naked in stirrups all day, and it's too sensitive an area for stuff like foot powder and tea tree oil (I tried both and omg the pain was unbearable) I feel like I'm being punished, and have thought so many times about suicide. Counseling has not helped, because there's no way to fix what's wrong, so how can I move past it emotionally when it's with me every day and will never go away? I was not able to get disability because they refused to believe it was as debilitating as I claimed, so I suffer daily at a desk job where I have to sit on my sores for 8 hours a day. I'm cranky and miserable with my co-workers, and can't even tell them why. I hate what this disease has done to my life, I have nothing to look forward to but more of the same pain, loneliness and self-loathing. I really wish things could be different.
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Old 02-23-2011, 06:55 AM
1 posts, read 7,010 times
Reputation: 10
@uglybumps.....I too suffer from this terrible disease,and have had it for 9 years.It's really bad...I feel my life is over at 29....and it is very debilitating.I have it under arms,groin,and my private area...and being a lady,I know how embarassing it is and stay secluded at home.I think the majority of the problem is is that not many doctors know about this disease or don't know how to handle it.When I lived in Florida....I had FINALLY found a great surgeon(he ended up removing my ENTIRE right armpit and doing a skin graft.....and I had to spend 2 weeks in the hospital....but that was 3 years ago...and no bumps have come back in that area.!!He really knew this disease..and told me unless he did a radical surgery and took out ALL sweat glands that it would come back.The bad part is I had to move to West Virginia....and I can't find any doctors up here to help me!I have went to the ER numerous times..only to be sent home on antibiotics....which you probably know...has very little effect.I am a true believer the only answer is surgery.....but what are you to do when you can't find a surgeon?I wish I would have stayed in Florida so that surgeon could have helped me....he was going to do the same procedure on each infected area as soon as the previous surgery healed.I hate to hear that you are suicidal....I know this makes you miserable...but hopefully one day you will find the right doctor.I would appeal your disability thing....because this disease does put you down..and is very painful.Good Luck to you
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Old 02-26-2011, 03:33 PM
Location: Halifax, Nova Scotia, Canada
1 posts, read 6,988 times
Reputation: 11
Hi everyone, I'm new to this forum. I have been suffering from HS since I was a teenager but never knew it had a name. I was formally diagnosed about 8 years ago by a new family doctor. I have moved quite often and it was just something that I had and I dealt with it the best I could. At the time I had them mostly in my armpits. She suggested she removed the ones under one armpit and see how this would work. She did and according to everything I've been reading so far, I was very lucky because they never reappeared on that side. I got them under my other armpit and met with a surgeon this time. At my preoop appointment with herm, she told me she would do the operation but she had little faith it would be a definite solution. Circumstances did that I had to move yet again to another city and had to cancel the surgery. At the time, I was working in a garden center so it was very difficult to do anything when an abcess appeared...it was in fact impossible to lift anything ...everyone knows how it is. I had to take time off work often because of it and had very little support from my employer, of course, he wanted someone that could "do the work" and not someone he had to pay sick days for. I decided to go back to university in order to better myself and get a job that would have no physical work involved. Going back to school brought a lot of anxieties and stress and I developped psoriasis. In the meantime, I started getting abcesses on my pubis and in my groins. I was in a relationship at the time and he could not handle the fact that I was under a tremedous amount of stress from school, the psoriasis that was covering my feet and hands and the abcesses that were making me even more edgy. He decided I was not the "one" and terminated the relationship. I then fell in a major depression that lead to hospitalization, which at the time seemed totally out of nature for me but it was the thing to do. I was seen by a psychiatrist that prescibed me some antidepressants so I could at least function emotionally and with help from a really good friend, I was able to go back to school and graduate last year. This is four years ago. Fastforward and I had to move for a first job in my field. I now see a dermatologist for my psoriasis and she's put me on Soriatane saying that we might be able to kill two birds at once. I have been on it for 4 weeks now, I see some small improvements on my plaques. My abcesses under my other arm are drying up a bit. Not sure if it's because of Soriatane, but we'll see. I still have the ones on my pubis and now on my labias (twice on one side and once on the other). I know exactly how you feel uglybumps. If there's anything I can suggest is to see someone that works in mental health and get help. If it means taking antidepressant (they are not the cure but will make life bearable) then so be it. Then you can start seeing life and the future in a better way and find ways to cope with your HS.
This disease is not only a skin condition. It is an emotional rollercoaster that can make your life miserable. I don't pretend it's easy all the time. I too am single, not by choice, living in a new city, starting a new job and trying to lead a relatively happy life. I will keep you posted on how I'm doing with Soriatane and if it helps my HS. I'm on a cruisade, not to cure the thing but to live with it, in least pain possible, both physically and emotionally. I did not mean to be so long winded but I when I read your post, I felt you are now where I was and it really hit home.
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Old 03-02-2011, 03:55 PM
1 posts, read 6,974 times
Reputation: 10
teebopop..Very quickly..I am sure all people with HS has aomething in common--intestinal parasites/IP/Because of that nothing works..Antibiotics attack 1--cell animals but IP are full body animals ..They do not care living theyr inner live--coupling,fighting intruders,dying and produsing kind of toxins..
Go to the gastro MD, take test to define what type of IP you have, take 2 pills..Relief almost immediate, after 2 weeks you will be HS free, for 5-10 yers/periodically flushing IP in toilet..
we both with my wife have IP but she has HS, severe condition and we have 2 new cats which use to drink from our glasses...how sweet..
Right now got another message..Terpentine/i am not sure if this word i wrote right/..Few drops on cube sugar..That,s how slaves centuries ago get rid of IP...Good luck...marek
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Old 03-18-2011, 10:50 PM
2 posts, read 12,921 times
Reputation: 10
Default There is a lot of remission with diet changes

Hello everyone, not sure if any of you have ever read any of my posts but I am on several HS forums with information about diet changes that helps the HS. We have a lot of people in remission.

Basically you need to make drastic changes to your diet. It is hard at first but you can do it.

You want to omit grains, even rice, no dairy, no sugar, no white potatoes, and very few legumes. In addition to that some of us have a problem with chocolate, nuts, seeds, and caffeine. & no artificial sugar. Be sure to drink plenty of water. Some of us have a problem with oranges.

You want to eat plenty of meat, seafood, veggies, fruits and eggs. Add in things like kale and coconut milk to your diet.

if you want more info please PM me or google my name "gfpaperdoll" & you will see my posts on other forums & I have a thread about HS and diet on a couple of forums.

There is hope - one plate at a time...
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Old 03-18-2011, 10:59 PM
Location: earth?
7,288 posts, read 10,364,337 times
Reputation: 8956
I don't know anything about this syndrome. I am sorry any of you have suffered. I am curious if any of you have anger, self-esteem, or shame issues.
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Old 03-24-2011, 08:03 AM
1 posts, read 6,863 times
Reputation: 10
I suffer from this disease as well and of course, you have to keep it dry and keep air on it. Something that works for me but you have to use it daily is Neutragena Sun Block. It happened by accident b/c my derm told me to use it going to the beach b/c i was on Accutane (which didn't work). It will not get rid of it completely but it will give you some relief for at least 2 months... When it gets too bad, I HAVE to go to the dermatologist and get Cortisone Shots...even in the groin. I'll take that 10 second sting to relieve me for a month... I have to go to the derm monthly but it's worth it.... Neutrogena Sun Block will dry it up and keep some of it off.
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