Hidradenitis suppurativa

Posted by Midnight @midnight, Sep 6, 2011

I would like to talk with anyone who has this disorder. I recently was diagnosed with this after having a cyst and uncontrolled blood sugars. Did not know I was “diabetic” until they called me back to the ER for a blood sugar of 680. Now I have horrible cysts that wont go away and are very embarrasing. Anyone out there who can help me understand and deal with this?

Liked by chloe`123, Msdodo987

@autumnleaves

@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. 🙁

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@autumnleaves I can understand your reluctance to take any of your current options. If the specialist had a better track record it might be worth the money to get relief. I sincerely hope some other, better options will open up for you.
Please let us know if you find anything that does help.
JK

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@mbrittain

i has my first hs cyst at 18. 6 major surgeries with recurrences at site of surgery before area even healed. finally i found an absolutely wonderful, caring pa who researched this [never before diagnosed] problem. Methylpredsinolone dose pack started at first sign of lump IMMEDIATELY resolved problem and cyst disappeared. We also tried bactrim but found no difference with abx added. also noticed through the years that cysts often followed mentsural cycles – worsening before start and lessening after period ended. But without prednisone, cysts seemed to come back worse second time. though not proven, my own personal theory is hs is affected by hormone fluctuations and stress. If you have hs, please try the methylprednisonlone dose pack. You will be AMAZED! My PA is my hero and I thank Heaven every day for her and her willingness to research my symptoms and find the closest thing to a cure there is. If you live in kansas, I would be happy to share her name even though I don’t want to share her.

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@mbrittain can you please suggest me ur pa name and details as i live in kansas and i have hs on my vagina and i need this to be cured soo badly. Please help me

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@mamtaemily23

@mbrittain can you please suggest me ur pa name and details as i live in kansas and i have hs on my vagina and i need this to be cured soo badly. Please help me

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Hi @mamtaemily23,

I’m confident that @mbrittain will return; I also hope @midnight @sandig @drew1991 @msdodo987 @autumnleaves @andrewsta02 @amy75 and the others sharing here will return with some update as to how things are going. How are you coping at present, @mamtaemily23?

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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.

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@mamtaemily23

@mbrittain can you please suggest me ur pa name and details as i live in kansas and i have hs on my vagina and i need this to be cured soo badly. Please help me

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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.

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Did you go for surgery?Did it not help?

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@mamtaemily23

Did you go for surgery?Did it not help?

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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.

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