Wellness

[nana59]

At my wit's end with this condition...can anyone offer me some advice....

[shaggygirl]

I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.

I just came back to add this. Maybe your situation isn't as serious as my friend. Her areas of issues were the armpits and then the worst were........how to say........the areas that your undies cover. It's been some time since I did any reading on it being she then was hospitalized and passed from the leukemia so can't remember now if those are the only areas that are affected or if the boils can erupt elsewhere on the body as well. By the way, to the best of my knowledge there was no connection between the hidradinitis supportiva and the leukemia.

[nana59]

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wrote:

I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3 years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You  have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.

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Thank you for your caring thoughts....i, too, have tried many many different treatments...no relief....and have done alot of research on the internet....spent 5 days in the hospital in sept......never healed....went to hospital this past monday for another infection in same spot.....i'm just so weary......thank you again...sorry about your friend...

[shaggygirl]

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wrote:

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wrote:

I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3 years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You  have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.

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Thank you for your caring thoughts....i, too, have tried many many different treatments...no relief....and have done alot of research on the internet....spent 5 days in the hospital in sept......never healed....went to hospital this past monday for another infection in same spot.....i'm just so weary......thank you again...sorry about your friend...

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I guess we were typing at the same time, I added to my previous post! Good Luck To You, I Wish You A Cure!

[spent2much]

@nana59I've never heard of this, but from the description it sounds SO unpleasant.  I live with chronic pain, so I'm very sensitive to other people's ailments.  I'm so sorry you have to live with this.  **HUGS**

[nana59]

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wrote:

@nana59I've never heard of this, but from the description it sounds SO unpleasant.  I live with chronic pain, so I'm very sensitive to other people's ailments.  I'm so sorry you have to live with this.  **HUGS**

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thank you...i, too, live with chronic arthritis pain....sometimes-most of the time-it's too much for me to handle...

[nana59]

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wrote:

I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.

I just came back to add this. Maybe your situation isn't as serious as my friend. Her areas of issues were the armpits and then the worst were........how to say........the areas that your undies cover. It's been some time since I did any reading on it being she then was hospitalized and passed from the leukemia so can't remember now if those are the only areas that are affected or if the boils can erupt elsewhere on the body as well. By the way, to the best of my knowledge there was no connection between the hidradinitis supportiva and the leukemia.

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Yup...armpits...and since sept my butt!  i'm a very private person, and am tired of doctors looking at my butt.....especially doctors that are younger than my children!!  just so demoralizing....

[OKPrincess]

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wrote:

At my wit's end with this condition...can anyone offer me some advice....

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@nana59 I have never heard of your condition but I'm sorry that you're living in pain. I doubt you're the only person that is suffering with your condition so maybe someone who has it or knows of someone who has it can offer you some great advice. Please.  These days we have to be our own "doctor." Bless you.

[fortune]

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wrote:

At my wit's end with this condition...can anyone offer me some advice....

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@nana59

I did some research on this disease.  I can't believe that they haven't found a cause--no bacteria, fungus, etc.  I wonder if going to a teaching hospital would be warranted.  Sometimes these hospitals are up on the latest medical advances.  Also, I read that it is aggravated by smoking. Have you seen a dermatologist?  It looks like this condition is connected to Intertrigo.  Do you have diabetes or extra weight?  Good luck to you!!!  This sounds like it is not an acceptable health problem!!!

What have you tried so far?

[Midnight11]

Have you heard of Emuaid?