| User | Comment |
|---|
| Amanda | | posted 23-Feb-2005 3:03pm |
I've had HS for about 5 years now, but wasn't diagnosed until 2 years ago. I'd never known anyone with it until after I found out that's what I had (at least, no one told me they had it). I've met some very awesome people with it through online support groups. |
| Updown | | posted 23-Feb-2005 3:17pm |
I think I may suffer from this condition, and I have since 1998. I always thought they were boils. I had a particularly painful flare-up that lasted through January of this year. I have had no scarring to date. I set an appointment for February 21st, but I had to reschedule for March 15th. Neither my doctor, or myself, has ever mentioned this disease. I will be sure to bring it up to her. |
| Updown | | (reply to Amanda) posted 23-Feb-2005 3:19pm |
I think I have had this disease for almost 7 years now. What kind of treatment do they provide in the beginning? I only get flare-ups once every two years, or so. Although I have had 2 flare-ups in the past calendar year. I had never heard of this disease before today. |
| Amanda | | (reply to Updown) posted 23-Feb-2005 3:43pm |
The sad part about HS is that there aren't a lot of treatments out there, as there has been little research. You can Domeboro powder on flair-ups and it helps draw them down faster, without them popping. When they pop, you open yourself up to infection. The Domeboro powder is a little expensive (I pay $15, for 10 little packets of it), but is well worth it. You can also use tea tree oil for this, but it's not quite as effective. Tea tree oil is rather inexpensive. Staph infections are quite common and antibiotics are used to treat them. During stage 1, which is where I'd guess you are, there's not a lot of treatment options. Luckily, some people never progress past stage 1 and, hopefully, you'll be one of them. In stages 2 and 3, there are more treatment options, but nothing really desireable. Radiation therapy, surgery, that kind of thing. I'm in stage 3 and going to see a surgeon tomorrow morning (Thursday). I'm not excited about this, but at the point I'm in, HS has almost taken over my life. When I had to miss my son's soccer practice on Monday, I realized I HAD to do something to get this under control.
If you do, in fact, have HS, it's not surprising that your doctor hasn't diagnosed it. It's often misdiagnosed, because many doctors don't know a lot about it. Like I said, it took me 3 years to get a correct diagnosis.
The doctor I'm currently going to is awesome. His nurse has HS, so they are very understanding about it. This helps a lot. I've been to other doctors that didn't understand the pain and frustration involved. They were like, "Oh, you got a little boo-boo." Not what you need to hear when you're in as much pain as HS can cause. |
| Amanda | | (reply to Updown) posted 23-Feb-2005 3:45pm |
By the way, there's not really anything you can do to prevent flair-ups. HS isn't really treatable, only the flair-ups are. |
| Updown | | (reply to Amanda) posted 23-Feb-2005 5:10pm |
Thanks for the information. I too hope I don't progress past stage 1, and I am sorry to hear that you have. It's really kind of odd. I have received so much "concrete" advice on how to take care of boils, and to a person they were all wrong. That's kind of frightening. Luckily I am under a health plan, and I will see the doctor within a month. I should gather some documentation for her. Is there a website with some solid evidence, or should I return to the site you offered with the survey? |
| kirst | | posted 23-Feb-2005 5:16pm |
No, thank god. It sounds painful and ugly. |
| caviartaste | | posted 23-Feb-2005 5:22pm |
don't think so... |
| freebird | | (reply to Amanda) posted 23-Feb-2005 6:47pm |
I have this too Amanda. But thank you, thank you, thank you for this link. I thought I was the only one. They are really bad sometimes. I take meds but they don't do anything anymore. The doc did not even know what they were. This is one horrible thing to have believe me. I am so scarred already. As a matter of fact I went to the link and printed this all for my doc. |
| Amanda | | (reply to Updown) posted 23-Feb-2005 7:01pm |
On the website I provided, go to the links page. You should be able to find what you're looking for there. If not, let me know and I'll try to find what you need. |
| Amanda | | (reply to freebird) posted 23-Feb-2005 7:10pm |
You never know who has it, huh? So many people are ashamed of how others will look at them after finding out they have this disease and just suffer in silence. I was one of those people for a long time.
I agree that it's a horrible thing to have. People just don't understand what you go through. The pain is sometimes so bad I cannot function. This, then, causes emotional pain.
Meds do nothing for me, either. Most doctors want to stick you on antibiotics, but they work for very few people with HS. Like I said, there's really not any known ways to treat it.
If you'd like, I'll find out who the contact person is in NM. This person would know about what is available in your area. Such as doctors, support groups, etc. Most contact people also plan get togethers for HS sufferers, where you can learn about what's working for others, new treatments coming out, etc. Anyhow, let me know. |
| Amanda | | (reply to freebird) posted 23-Feb-2005 7:20pm |
So, how long have you had HS? Have you tried any treatments besides medication?
I, too, have become scarred from it. I'm going in the morning (Thursday) to see a surgeon about it. My doctor decided yesterday that it's time. What brought it on is that I had a golf ball sized abscess on my abdomen. It popped and left a hole the size of a silver dollar and about 1/2 inch deep. My general doctor said that it's infected and believes the infection goes much deeper than the lesion itself. He thinks I'll need surgery to remove the damaged and infected tissues. He also said that it's about time I consider having THE BIG surgery, where they remove skin, lesions, and scarring from the worst areas. I'm so scared and worried about what this surgeon will say. I don't do surgery!!! And, after seeing pictures and talking to people that have had the big surgery, I'm not thrilled about the possibility. From what I gather, the pain is severe for quite a while after and you are unable to lead a normal life for several months, basically being on bedrest. |
| BerrieGrrl | | posted 23-Feb-2005 11:41pm |
no i don't...and it doesn't sound very nice, either. |
Zang  | | posted 24-Feb-2005 9:56am |
I hope not. It sounds nasty. |
bill   | | posted 24-Feb-2005 10:00am |
I don't think so, though I do get styes (inflamed swelling of a sebaceous gland at the margin of an eyelid) sometimes. I have to take special care to clean my eyelids because of it. |
| Updown | | (reply to Amanda) posted 24-Feb-2005 10:09am |
Thanks. |
| freebird | | (reply to Amanda) posted 24-Feb-2005 10:13am |
I have had it for about 9 years. At first I thought it was herpes. I was scared out of my mind. The doc said it was a cyst. But when the kept coming back for "years"--he said he did not know what it was. I am scarred on my butt, my legs and now I am getting them on a breasts and my stomach. Some are as big as baseballs, I kid you not. I take pain meds when there is a few of them at the same time. Antibiotics do nothing for me either. Sometimes I can feel them coming weeks before the cyst-boil-whatever hits the skins surface. The pain is intense. I sure would appreciate the contact in NM if this is not too much trouble. I really did not think that anyone else had this condition--I am sorry you have it also, though. Do you know if this runs in families. Although I thought I was the only one, my sister and my father have them. My father had one that was so bad--internally, that he had to have intestine removed and wore a colostomy bag for 2 years. My sister has had them--she says--since she was 14-she is 33 right now. That is a hell of a long time to suffer. |
| ROCKMAN | | posted 24-Feb-2005 10:19am |
No, I do not know, and have never heard of this before. |
| Jody | | posted 24-Feb-2005 10:21am |
I've had folliculitis and cellulitis, but both were curable with antibiotics. I'd never heard of HS until reading this survey. |
| freebird | | (reply to Amanda) posted 24-Feb-2005 12:13pm |
I will have you in my thoughts Amanda. I hope you get good feedback and hopefully the surgeon can take care of this for you. I know I am at the third stage.  |
| Enheduanna | | posted 24-Feb-2005 12:40pm |
I have no idea. |
| Amanda | | (reply to freebird) posted 24-Feb-2005 7:56pm |
The cyst-boil like things are often called "aliens" by people who have HS. What a fitting term, huh?
Most often if you have HS, someone in your family also suffers from it. Not always, but a majority of the time. But, yes, genetics play a big factor. Luckily, no one else in my family has it and I hope and pray that none of them develop it. Also, did you know that HS is more common in people with darker skin? Fair skin people rarely get it. It normally affects blacks, Hispanics, Italians, Asians, and Indians. (Lucky me is 1/3 Italian and 1/3 American Indian. At times like this, I want to curse my ancestors for having darker skin!  )
I can very well believe that your sister first started having symptoms at 14. In a lot of people, it starts shortly after puberty.
I'll email you the information for the NM contact person. I'll also email you the 24 hour HS hotline number.
My visit with the surgeon didn't go well. He had little to no knowledge of HS. He actually told me that it was probably caused from not showering enough and from being overweight. First off, I shower every morning and take a bath every night and also shower at other times if I've done something to get dirty or sweaty. (I think it's safe to say I shower enough!) Secondly, weight has nothing to do with HS. It affects people of all shapes and sizes. Anyhow, he also told me that it's too far progressed for surgery. I called my regular doctor when I got home and talked to his nurse. She told me to come up there right then. This surgeon did nothing about the open lesion I've got! Anyhow, she took care of cleaning out the lesion and stuff. (My doctor wasn't there.) I'm going back to them on Monday. The nurse said that Dr. Williams (my regular doctor) would be having a nice little chat with the surgeon. Since he obviously had little knowledge of HS, he should have told me that, instead of making up excuses to why I have it!
Anyhow, I talked to the nurse about it and I think I'm going to talk to Dr. Williams about lasar surgery and radiation therapy. Right now, I'm kind of exploring my options. The nurse has had it for 20 years, so she knows what I'm going through. Also, Dr. Williams treats several other HS patients. I was so glad that I found someone who knew about this disease. |
| Amanda | | (reply to bill) posted 24-Feb-2005 7:59pm |
What kind of special care? |
| bill | | (reply to Amanda) posted 25-Feb-2005 8:31am |
Well, it comes down to just having to rub them with a soapy face-cloth more than I generally have to do for other parts of my body. |
| Amanda | | (reply to bill) posted 25-Feb-2005 8:45am |
Oh okay. I was thinking you had to clean the inside of your eyelids and was wondering how you went about that.  |
| bill | | (reply to Amanda) posted 25-Feb-2005 9:02am |
The doctor told me to do this more elaborate thing where I had to dip a q-tip in warm, soapy water, then rub along my eyelids with it. Then soak each eye in a hot face cloth. I did that for a while, but it was too much of a pain. So, I ended up compromising. Hopefully, my compromise will work. |
| Danger | | posted 27-Feb-2005 9:51am |
I've never heard of it until now. |
| Dino | | posted 27-Feb-2005 3:33pm |
I have never seen or heard of it before. |
ElvisFan67  |
Not that I know of... |
| ElvisFan67 | | (reply to Amanda) posted 1-Mar-2005 2:28pm |
This is your first survey in...how long? Because I know you haven't created a survey in ages. |
| Amanda |
You're right, it has been a while since I created one. I just checked and the last one I created was on October 7, 2003. It's about time for me to get my survey boots back on, don't you think? |
| ElvisFan67 | | (reply to Amanda) posted 3-Mar-2005 7:08pm |
Yup. |
| patarnone |
I know of no one with this horrible disease.
Sounds like a good reason for euthanasia.(I'm joking, of course)
What a fascinating medical web site. I am totally medicine oriented and this was most informative. In my 40 years of photofinishing, I have seen many gruesome medical photos. I "feel" for anyone having to deal with such a disease as HS. |
| patarnone | | (reply to Amanda) posted 1-Apr-2005 8:24am |
OMG Amanda, after what freebird said, could this be hereditary? Geneticists need to test for markers and get to the bottom of this. Septicemia can kill. I'm glad you are going to the surgeon, but I understand your fear. I know it's going to be hard, but stay safe. pat |
| Amanda | | (reply to patarnone) posted 1-Apr-2005 10:25am |
It can be hereditary, but isn't always. There's not much research about HS, as it's still considered a rare disease. |
| patarnone | | (reply to Amanda) posted 1-Apr-2005 3:35pm |
you are very brave, not only to deal with this as well as you have, but to come forward with what must be personal sacrifice. Your bravery is to be applauded. |
| Amanda | | (reply to patarnone) posted 1-Apr-2005 5:49pm |
Thanks. |
| Lahdee |
I have recurring painful bumps on my knuckles, I wonder what that is. |
| Aquarius40 | | posted 20-Apr-2005 3:37pm |
I've had it for a few years and JUST realized that it wasn't normal! Amazing how long you can live with pain & shame and not do anything about it... |
| qwerty123 | | posted 23-Jan-2006 7:35am |
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| canwiccan | | posted 26-Jun-2006 6:41pm |
I am in the third stage of this. I am 39 years old and have had this since I was about 16. I used to only get the occasional cyst but over the past 2 years, it has been constant under my arm. I have seen one surgeon and he was a jerk! Thankfully, I am seeing another surgeon on Thursday who specializes in wound care and is familiar with this disease. I do not feel ashamed that I have this and I don't think that anyone should. Sometimes, we have no control over what our bodies do or don't do. I'm not relishing the surgery but for me, I think it may be the only option. I've been on countless antibiotics for this and am allergic to both penicillin and sulfa drugs. I'm right handed and of course, it's my right under arm that's affected. It's also starting to get worse in my groin. I'm praying that things will go well. I think that this disease is more prevalent than is originally thought as some people are ashamed that they have it and do not come forward. Silence is not good. The word needs to be spread and out there so that people are not ashamed! |
| krazyaly06 |
I have a question.....can u die from HS? |
| cabinfever |
Never heard of it before now... it sounds like one dog of an illness to have. |
