susan - 12/15/00 16:57:46 My Email:susana026@v-103.com Age: 26 Gender: female Where you live.: Atlanta,GA Comments: I have HS. I've had it for about 4 years. I think my father also has it.It is very embarassing to me sometimes when the boils are oozing they make you smell. I really get aggravated wishing they would just go away. If anyone wants to speak to me e-mail me. Charlotte - 11/26/00 13:59:43 My Email:Charlie.mumford@talk21.com Age: 28 Gender: Female Where you live.: Worcestershire UK Comments: What a releif it is to find your web site!! I have been suffering from H.S for 9 years now and it is becoming unbearable,i was diagnosed 3 years ago after numerous visits to doctors, i now see a Dermatologist,at first she prescribed me antibiotics for nearly 18 months but theese didn't work very we l I am now taking Roaccutane which i have been on for 9 weeks with still now change in the H.S just all the side effects which are very hard to cope with ,i have very dry skin on my face and my lips have cracked so much they bleed,i have constant nose ble ds alot of joint pain and muscle aches my knee joints are so bad sometimes i can bearly walk. I have just had a check up at the hospital and have been told that the Roaccutane should start working soon and to go back in 2 months if it still hasn't worked have got to consider plastic surgery(with no guarantee) because i have "CRONIC DISEASE" this realy frightens me and i dont know what i am going to do,i know i can't put up with the H.S much longer i have got to the stage where i can't even look at myself in the mirror anymore, my family and my husband are very supportive but it doesn't stop me feeling this way.Has anyone tried any kind of alternative therapy that has worked if so could you pleasse E-mail me,My heart goes out to you all,have a pain free da Angela - 11/24/00 02:11:23 My Email:Fasttrackfamily@aol.com Age: 25 Gender: Female Where you live.: Jackson, TN. Comments: Hi. I have read some of the things you all have wrote and I can say that I know how you feel. I have had H.S Kimberly - 11/22/00 21:25:00 My Email:Fishtasy@excite.com Age: 30 Gender: Female Where you live.: Alaska Comments: I've had H.S. for several years but was only recently diagnosed. My current therapy is antibiotics, 3months worth. I've been on them for 6 weeks now and am not seeing much difference. My next step is to try the accutane,(any comment From users of accutane would be appreciated). It kinda scares me to think of all the side affects that I've been warned about taking the accutane. They tell me at the doctors office that on a scale of 1-10 I'm at a 3, 10 being the worst. I'm greatful for this, but at the same t me depressed because I still have this. From everything that I've read, It doesn't get any better. Can someone who has this e-mail me so I can ask specfic questions. Fishtasy@excite.com JUSTME - 11/17/00 15:55:52 Age: 42 Where you live.: California Comments: I want to let you know what a relief your page was for me. I had these lesions on my breasts and under my arm pits. I had no idea what they were. I typed in abcesses on breasts and armpits in a GOOGLE search, and it brought me to your page. I truly though I was dying of cancer. I have always been the kind of person to just let something go, and hope it will go away, not wanting to face the truth. But your page made me go see a Dr! And sure enough, I do have this disease. I probably never would have even one to the dr to have this checked if it werent for this page. I am going to pick up my antibiotics here in a few mins, and I am hoping this is the cure for these awful looking lumps that I have been suffering from for over a year now. THANK YOU! Isobel McCauley - 11/14/00 17:08:23 My Email:Isobel@downsdrive.fsnet.co.uk Age: 49 Gender: Femail Where you live.: Cheshire Comments: Sorry for using your site like this,but Tracy Spence who sent me an e-mail, Re HS ,the server keeps returning my reply to you. I have sent 2 replies to you but both were returned. Please try again. Thank you Isobel McCauley Isobel McCauley - 11/14/00 17:04:06 My Email:Isobel@downsdrive.fsnet.co.uk Comments: Annabelle - 11/14/00 14:03:03 My Email:Annabelle719@hotmail.com Age: 33 Gender: Female Where you live.: Rio, Brasil Comments: Hi Everyone I will make this as short as possible. I am now 33 but 2 yrs ago boils began to appear under both arms - 9 in total within 5 months. The tenth and last boil was on my chin!! Great look!! I have never suffered with this problem before. I went to a speci list who was completely honest with me - he had no idea why this was happening but lanced all 10 of them because of the agony I was experiencing and gave me painkillers so I could sleep at night and feel more relaxed during the day!! Yeh right!!! When m mother learned of my problem, for the very first time in her life she spoke of the very same problem she had had at age 15 until 20 years of age but her boils were always on her face. My mother told me that she felt a "social undesirable" and for five y ars hid away from the world, cried a lot and had few friends. She had been to numerous specialists and no-one could help. Finally she went to an Endo who gave her only one thing - ADVICE THAT WORKED. Stop eating eggs, no fried food, keep intake of dairy products and meats to the absolute minimum and, or better still, become a vegeterian and do some kind of exercise every day drinking 8-10 glasses of water. After six months of following this diet she saw improvement and within the year no more boils. 15 years later when my mother was pregnant with her last child she had cravings for milk products, eggs and chocolate. She gave in and ate whatever she wanted. After my sister was born, my mother's problem returned with gusto!! My mother and I remain semi-v geterians today and do not eat eggs or dairy products. We eat a little meat, lamb or beef. My Endo told me that this problem is definitely hormonal but could only give me antibiotics. I stopped with the antibiotics and followed my mother's advice, and I thank God that it worked for me! I cannot express in words how bad I felt when I had this problem and wish for all of you that a cure is on its way. Good luck and lots of good health for you all! Charlene - 11/05/00 06:08:40 My Email:charlene1711@webtv.com Age: 17 Gender: female Where you live.: california Comments: HELLO EVERYONE. I am also a sufferer of this disease. I've had it since I was 12 years old and I am seventeen now. I haven't had it as long as others but my condition has gotten worse over the years. I get the bumps under my arms, in between and under my breasts which is the worst, my neck and my groin area. I have never had a surgery or even had one lanced because the doctors where I'm from are too scared to do it. I've seen so many doctors and been on so many antibiotics I had lost o much faith in the medical field. Just recently I found out about the disease because my doctors never explained it to me so I researched it on the internet. I've seen a plastic surgeon but he didn't want to do the surgery because I already have keloids rom some of the bumps I use to scratch when I was younger. He was afraid that if he did a skin graft that around it would be a huge keloid. To be truthful I wouldn't care about the keloid if it takes away the pain I go through. After I've read this web si e and others it seems that surgery doesn't really work. I have tried several self treatments to help them but did not notice any changes. As I read over everyones comments I started to cry because I know what everyones going through. I didnt even know ho much pain was built up in my heart about this disease until today. After useless doctor visits I use to want to cry because it seemed as if they didn't care but I didn't because I wanted to stay strong for my single father who has enough medical problem his self. He's been the only one I talked to about the disease. He's the only one besides the doctors that knows my condition. Until today it seemed as if this disease came to a dead end. I had no hope left and then I found this web page and knew that I as not in this alone. Now I know there are others who are hoping and praying for a cure which makes me not want to give up. My prayers go out to everyone. Melany - 11/04/00 14:34:55 Age: 30 Where you live.: Nashville, TN / USA Comments: I was just diagnosed. My thoughtful doctor told me nothing but the name and to look it up on the internet. He did tell me it was an infection of the axilla/ glands. He gave me an antibiotic and sent me on my way. I do have Crohn's disease also that wa diagnosed 3 years ago. I am joining the autoimune disease of the week club. He also said that it could be caused by prolonged steroid use - Prednisone for my Crohn's. I am new at this and was very overwhelmed when I started reading about this. I thoug t the antibiotics would knock it out and I would be done with it. I should have been warry when I got my perscription and there was a refill. Docs. never give refills on antibiotics! How many others also have another autoimmune disease or have taken al t of Pridnisone? amber - 11/04/00 02:22:46 My Email:abarker73@aol.com Age: 27 Gender: female Where you live.: alabama Comments: About 4 yrs ago I had "cyst" pop up in my right groin area. My doctor told me then that it was a "cyst" and it could be removed with surgery but chances were it would come back. I waited and the "cyst" ruptured, leaving a purple colored scar and didn't re urn for about a year. 2 years ago I moved from Colorado to Alabama and I got another "cyst". Thinking it was the same as before I let it run its course, never saw a doctor, but the cyst never ruptured. Then more cysts came. In the past 2 yrs I've gotten a least 6 additional bumps, some rupture, some don't. They flare up, go away, but never completely away. One has been there in my groin area for 2 yrs, never rupturing, but getting horribly swollen and then decreasing somewhat. I also have 3 ON MY FACE!! 2 around my chin, both ruptured, and 1 by my ear. This I don't understand!! It's bad enough having these in a place that can be covered with clothing, but on your face!! I'm a 27 yr old attractive female, but how attractive is a bump on your chin the size o a lima bean!! Anyway, I went to my 4th doctor today, a dermatologist, and he said I have hidradenitis suppurativa... nothing major, he says, just uncomfortable. Yea right... nothing major... how does he know? Doctors don't know the cause, the cure, or ev n how to control it, so how can they know it's nothing major??? From what I've read I have nothing to look forward to, no light at the end of the tunnel, and it's most likely going to get worse!! WORSE!! This is bad enough!! So, as all of you with this di ease know, he started me on antibiotics to try for 30 days, if that doesn't work he wants to try Accutane (I'll have to pass on that one, what a scarey drug!!), and finally surgery, which from what I'm reading doesn't work either.... I read a letter from omeone that said they would've rather been diagnosed with AIDS or cancer, at least then there would be treatment and you would know what you're up against... I think I agree... I mean, we're not dying, I guess that should make us feel better, but does it eally make you feel better to know that you have a disease that no one knows anything about? Other than it's not contagious... and I don't agree with the hereditary thing either... no one on either side of my family has ever had anything even remotely lik this... I guess I'm just venting... I learned allot today from these web pages, I think I know more than my doc does, but I had hoped to find some chance of a cure!! I have the greatest respect for those of you who have this disease and in stages worse t an I.... I don't know how you keep your chin up, but I applaud your courage and optimism... I hope I get there!! Best wishes.... God Bless p.s..... have any of you ever gotten these on your face? Or heard of them being facial?? Isobel McCauley - 11/03/00 20:49:00 My Email:Isobel@downsdrive.fsnet.co.uk Age: 49 Gender: female Where you live.: cheshire Comments: Hello, just to say how wonderful it is to find this site. i started with H.S about 12 years ago. mainly underarms, with occasional groin. after numerous antibiotics that din't work,i went into hospital to have them drained. My GP then refered me to skin specialist who operated to remove axilla glands. i had skin grafts. i was off work for three months. i remained free for 10 years. Last year my worst fears were realised. i had recurrences under one arm or the other. i was given more antibiotics to no avail. i went in to have them drained again. 5 months later the recurred. then 3 months after that. another 3 months and they are back again.i am waiting to go back in to have this one drained. i have spent a fortune on self help. i have had homeopathy,chinese herbs, vit and mineral supplements, reflexology,reiki hea ing, aromatherapy, and eating a generally healthy diet with litres of water. i have had Aloe Vera, Echinacia, and i don't know hwat else to do.i asked my GP why they have recurred after a ten year gap, she doesnot know. please feel free to e-mail me with remedies or just a chat. Isobel McCauley Karen - 11/01/00 06:06:49 Age: 40 Gender: female Where you live.: Florida Comments: I can hardly think what to say; I just want to cry and cry because after reading all these messages I find, as did many of you, that I'm not the only one. I have been a dermatological nightmare since my late teens. Cystic acne has left my face, back, shou ders, and upper arms so scarred that I cannot wear a bathing suit, sleeveless shirt, etc. (very very difficult, living in Florida most of my life.) HS started in my early 20s but not correctly diagnosed until recently. Have been through the entire gamu of oral and topical medications, including 3 courses of Accutane (which worked well for the cystic acne but did nothing for the HS). The HS affects my groin, is constant, painful, and SO disgusting. More scars, oh god the scars! I am trapped in a body t at I loathe with my entire being. I don't know how my husband can stand me. Saw the surgeon today an am scheduled for radical excision of left groin on Nov. 13, but whatever hopes I had for that have quickly evaporated after reading these messages. Has O ONE gotten any long-term relief from surgery? This was my last resort . . . and to think that the awful things will just keep coming back, perhaps elsewhere . . . if anyone has any good news to report, I need it immediately. Thank God there is someone ut there who knows what I have been going through. I also have polycystic ovarian syndrome and have been on metformin (Glucophage) and spironolactone - high doses of both -- for 2 years; neither has had any effect on the HS. Martha - 10/29/00 16:49:49 Age: 36 Gender: Female Where you live.: Sydney Australia. Originally from Kansas, USA Comments: I am greatful for the information on this page and to know I am not alone. I have had HS since I was 13, and wasn't diagnosed until I was 36. I couldn't understand why I kept getting boils. Thought it was because I wasn't hygenic enough for awhile. Then I noticed a pattern with the boils. They would flare up when it was my t me of the month. The only time I can remember not having any boils was the year and a half I was on the pill. I too have had two large ascesses removed. One on my inner thigh and one on my posterior. Both had imploded. The largest I ever had was the one that was removed on my rear, it was approximately five to six inches in diameter. Scared me to death. I hav never let the boils incapacitate me. Didn't want them to win...(walked like John Wayne quite a bit). The worst though was while I was pregnant I developed seven boils all in the groin area. Of course I couldn't take antibiotics because all the okay ones you can take during pregnancy I am alergic to. I went ahead and suffered through until I breast fed f r one month, and couldn't take it any longer...stopped breastfeeding and got on tetracycaline. It was a relief. (A tip: Cinnamon and Sugar with a little warm water on a gauze bandage helps draw the boil to head and keeps it disinfected.) I thank God for my husband..very understanding! - 10/24/00 23:49:23 Age: 51 Gender: Female Where you live.: Chicago, IL Comments: About 6 months ago, I went to my Primary Care physician who felt that what I had was a sebaceous cyst. But he immediately referred me to a surgeon. The surgeon also felt that it was either a sebaceous cyst or hidradenitis suppurtiva. The surgeon sugges ed that I come back in 3 weeks to see if there was any change. The abcess was underneath the skin of my arm with a track to an open hole from which it was draining. He did suggest at that time that I change from an aerosol spray deodorant to Mitchum Cle r Gel. There was no change as I expected as I had been living with this for two months prior. He immediately suggested surgery and placed me on an antibiotic called cephalexen. About 2 weeks later I had the surgery and he removed the armpit area and le t an open wound which should heal by itself. The surgery itself was day surgery under general anesthesia and really very simple. But it has been almost a month and the wound is still healing. The wound was initially being packed with iodine and an outs de bandage for about 5 days by the nursing staff, but the wound became infected. So the antibiotic was changed to cipro which I took for about 10 days. Then the wound was changed to being packed with saline and an outside bandage. After the nurses doin the wound changes for another week, I have taken over to changing the dressings myself. But the bandage and the tape have given me a huge red rash (similar to diaper rash) as the bandage is always wet from the saline and natural body fluids I imagine. nd the tape is ripping my skin and leaving open wounds. At the nurses' suggestions, I have tried the paper tape, but it does not hold the bandage as well. The doctor is not allowing me to do anything for the rash due to the open wound. I am a little dismayed to discover that this is something that is likely to recur. I had been told that it was indeed an infection of a sweat gland or a hair follicle. I guess I was expecting that it would be an unusual one-time thing. After reading this website, I also do have rosacea. My father had psoriasis and my mother has diabetes. So the connection could be coming from anywhere. I do not know of anyone else in the family with this problem. But as you say, it is not something veryone will talk about. I just thought that I would share my experience in detail hoping that it might help someone else. Carrie - 10/22/00 03:37:13 My Email:andrewscarrie@hotmail.com Age: 26 Gender: Female Where you live.: Georgia Comments: I am trying desperately to find someone who knows anything about the carbon dioxide laser surgery, This is suppose to be one of the most promising treatments available yet I can't seem to find any info on the subject to take to my dermatologist. I would l ve to hear from anyone with hopeful (or not so hopeful) info on this surgery. Thank you, Carrie Bonita - 10/04/00 00:28:52 Age: 25 Gender: female Where you live.: Virginia Comments: I have gone through surgery and they keep giving me the same antibiotic and it does not help. I am tired and about to loose my job because i have missed so much time from work . I dont know what to do. I hid it for years and it got so bad i was in the ospital havig surgery to remove skin and glands. I thought it would go away but it is back. And now it is showing up on my leg and my rear. I am so afraid and it is embrassing. I dont wear any thing that does not cover my armpits. I really want to t ank you for this site. It is nice to know that I have someone out there who knows what I am going through and that can help me understand it my self, my doctors have not been helpful at all. You have really helped me THANK YOU and GOD BLESS YOU. Patrick Cullen - 10/03/00 12:06:49 Age: 45 Gender: male Where you live.: Dublin,Ireland Comments: Found this site very interesting,Thankyou. Get very down about this condition sometimes. Patrick Sally - 09/30/00 07:19:13 My Email:Pigmon13@aol.com Age: 36 Gender: female Where you live.: Fitchburg, MA Comments: Hello, I have been awake since about 1:00am (in intense pain) and decided to tell a little bit about my story. I have had HS since I was 20 years old. I was married only 3 months when I started the systems. I have now been married to the same wonderful man fo 16 years. I had a radical disection of my left groin 6 days ago, (this is the fourth time they have removed my groins.) I have had about 150 small excisions but the only thing that really helps is having the radical excisions. I know alot of you don't want to do this and it is an awful disgusting thing to have done but it does give you some relief for periods of time. If some of my words are not making total sense, understand I am taking valium, vicodin, and other wonderful drugs that help to ease the pain some what. For those of you who do have good family support, remember it is just as hard for them as it is for you. My husband cleans my wounds, puts up with my mood swings and just supports and loves me more than I thought anyone could with this a ful disease. If anyone lives in Massachusetts I can give you the name of an awesome Plastic Surgeon. She understands and really cares. lyndi - 09/26/00 22:56:04 Age: 18 Gender: female Where you live.: virginia Comments: i am soooooo glad that there is at least one website in the world that is actually important to my life. i have had this hs since i can remember. it has scarred me emotionally and physically. my whole life i wondered why me because no one else had anythin of this sort and i thoght that it was so unfair that i had to deal with so much pain all the time. i went to doctor so many times and none of them ever knew why i was the way i was. they all have the nerve to look at you like its your fault you have some hing no one has ever seen. when i read some of the stories i cried because that had been my entire life that some of these people seeemed to have. i wanted to reach out and hug each and every one of them and tell them that that was exactally how i felt an now we are not alone. thank you for this wonderful place that i can come to and feel like everything just might be ok after all. Sherry - 09/20/00 13:35:10 My Email:buzzybear25@hotmail.com Age: 26 Gender: Female Where you live.: South Carolina Comments: I came down with HS when I was 17 years old. I struggled for 7 years of going to doctors upon doctors and not ONE could tell me I had this disease. One day a year ago I began doing research on my own and ran across H.I.D.E. Web site. I printed out the pag s and brought them to my physician and he concluded that I did indeed have this rare skin disease. As you could probaly tell I have lost some faith in the medical profession. At a few points during those 7 years of not knowing I had HS, I hoped for any a swer and it was very stressful. Your website is a great help for many people. I just wish doctors knew about this-because most dont. They will usually diagnose it as folliculitis. Does anyone know if there is progressive research into finding a cure for t is disease? It just seems to me that doctors don't even know about it in the first place. Thanks for the site again. Brandy - 09/02/00 10:18:20 My Email:MyBrownEyedAngl@aol.com Age: 21 Gender: Female Where you live.: Southern Illinois Comments: Hello, I would like to start off by saying that this website is simply wonderful! I am 21 years old and have suffered with HS since I was about 12. At 12, I started getting boils on my inner thighs. My mother took my to a finally took me to see a doctor about this problem when I was about 14, and started getting them under my arms. When I went, the doctor gave us no real diagnoses.. he simply said it was from my clothing being too tight and being "over dressed" in warm weather. I was then put on Tetracycline which produced no results. I dealt with the pain for quite some time before I went back to any doctors about it again. I had no faith that anyone could help. In August of 1998, I gave birth to my first child. Throughout my entire pregnancy, I never had any outbreaks with boils a all, until my daughter was about two months old. I then started getting them on my sides where my bra would rub, and under my breasts. After a week of being confined of how I could lay down, and what I could wear.. I sought the help of a new doctor. Agai , no real diagnosis, just meds. I was put on antibiotics, steriods, and steriod creams for about 2-3 months before he finally referred me to a dermatologist. Needles to say, for another two months I was prescribed the steroids and antibiotics. I found re ief in these at times, but I wanted the entire condition to just go away, not to just be under control. I have found several ways in the past fews years to help ease the pain that HS brings that I would like to share if it would help anyone in any way. Wearing loose clothing usually helps out a lot. Avoiding sweating as much as possible, going light on d odorants, eating healthier, soaking in warm baths to help the drainage of the boils, wearing 100% cotton undergarments, and clothing that lets your body "breathe" I find my problem with HS to be somewhat mild these days, and Im praying that it stays that way, however Im scarred for life. I have read a lot of the messages left in this column by other HS sufferers and it seems that many of them also suffer from di betes. Im wondering if these two conditions are linked. I know that diabetes runs in my family a great deal, and I have not yet been checked for it, however I plan to be checked now. If anyone knows of any links between these two, I would appreciate any i fo you could inform me about via email. Thanks for reading... Tracy Spence - 08/05/00 12:09:20 My Email:Corbridge455.freeserve.co.uk Age: 35 Gender: female Where you live.: Newcastle, England Comments: I have suffered from this for the last 18 years, I have it on both sides of my groin, behind both ears and now in the last six months under my armpits, left under control for now, right one errupting always, I have been on so many antibotics I have lost c unt and six operations on my groin area, and now they want to operation on my armpit, but I am now saying no, because in my mind, that will rid me of one and one will spring up again somewhere else and then I will have to go through the pain of it trying o find a hole to come out of, I have one on each side of groin which just ooze continuely, just recently I was given some tablets by a doctor, which I must say knew what he was talking about and I must admitted they worked for a while they are called Co-A oxiclav and they really did take the pain and the swelling away, well for six weeks at least but now it has errupted again. I am going to see a Homoeopath in a few days and give that a go, if that does'nt work I will go and see this Chinese herbalist in ewcastle, I will give anything ago, finally some family history, my sister is in the same boat as myself, she is a sufferer also and my mother when she was younger also suffered from them badly, however in her later years they have slowed down, but she di suffer from ulcerative colitis and now has a colostomy and my father is a diabetic (insulin dependent twice a day) so maybe it's just in the genes, lets hope not, thank you very much for your web site, it really does help to know we are not alone. Thanks again. Mary - 08/02/00 13:00:24 Age: 33 Where you live.: California Comments: Thank God for this site! I have suffered from this condition on my buttocks and groin area since I was nine. Noone knew what it was. Recently it has additionally flared up in the armpit area--ow! I 've had Doctors lance a boil but I really find it co es back again. No creams, clothing, detergents, medications or lack of have made any difference. However I did stay symtom free when I went on a no carb, no sugar, no fruit diet for another medical condition. It was very hard to stay on but for the firs time since nine my buttocks cleared up. I did lose 20 lbs also so that could be related. As soon as I went back on a regular diet everything recurred. For more info anyone can go to the www.healthyawareness.com site. Good luck everybody, you are not alone! I will keep checking back to see if anyone finds a cure! My partner is wonderfully understanding--there are great people out there--don't lose hope. Stephanie - 07/28/00 23:48:48 My Email:lunabud74@peoplepc.com Age: 25 Where you live.: Kentucky Comments: I absolutely loved your site!!! Finally went to a surgeon the other day who knew EXACTLY what it was that I had. I had been missdiagnosed for years. This is one of the first sites that I have checked out and I am so happy to know that I am not alone in this battle. Hopefully I will b trying out the laser surgery. The Doctor thinks that is the easiest, safest and quickest option, not to mention that I don't relish the idea of having large strips of skin removed from my body:)LOL Thank you so very much for this GREAT wealth of knowle ge!!!! ALONE - 07/22/00 21:56:23 Age: 37 Gender: FEMALE Where you live.: USA Comments: TODAY, A PRAYER FOR HEALING WAS ANSWERED. I FOUND YOUR SITE. THANK YOU. I CAN NOT BEGIN TO PUT INTO WORDS TO YEARS OF SADNESS I HAVE FELT. NOW UNFORTUNATELY, I FOUND I AM NOT ALONE. I COME FROM A LARGE FAMILY. THEY ALL HAVE SEEN THE BOUTS, AND ARE AT TIMES VERY CARING, BUT I FEEL LIKE THEY ARE ALSO ANNOYED. THEY DO NOT UNDERSTAND MUCH ABOUT H.S. AND NOW I HAVE A WAY TO EDUCATE THEM. MY SELF- ESTEEM HAS TAKEN A MAJOR BLOW. I HOPE THEY ALL WILL TAKE THE TIME TO READ YOUR WEB SITE AND LEARN THAT THIS IS NOT IN MY HEAD, AND NOT MY FAULT. I HAVE SEEN SO MANY DOCTORS THAT TOLD ME THAT I HAVE ACNE. I WAS TOLD 2 YEARS AGO, THAT IS WAS HS. I HAVE H D IT FOR 11 YEARS. I HOPE THAT ALL SUFFERS FAMILIES WILL SUPPORT THEM AND NOT BLAME THEM, OR TREAT THEM "DIRTY". WE NEED TO EDUCATE THEM AND THE DOCTORS HERE IN THE US. I HAVE TRIED VITAMINS, HERBALS, MEDICINES, RELAXING THERAPIES, YOU NAME IT I'VE TRIED IT. KNOWING THAT I AM NOT ALONE GIVES ME THE STRENGTH AND ENERGY TO BEGIN A NEW FIGHT TO FIND SOMETHING, ANYTHING, TO STOP THIS. PLEASE EVERYONE CONTINUE TO WRITE IN. WE ALL NEED TO HEAR THE STORIES, AND TO VENT, TO REMEMBER WE ARE NOT ALONE, WE ARE NOT UGLY, WE ARE NOT DIRTY, WE ARE NOT "CRAZY", WE ARE GOO PEOPLE, BEAUTIFUL PEOPLE, INTELLIGENT PEOPLE. LOOK PAST THE SCARS, TO LUMPS AND BUMPS, AND SEE US FOR WHO WE ARE. I LOOK AT MYSELF IN THE MIRROR AND MUST ACCEPT WHAT I SEE, NO APOGOLIZING ANYMORE. TODAY WITH ALL OF YOUR HELP I CAN BEGIN TO HEAL INSIDE AND HOPEFULLY OUTSIDE. I WILL KEEP ALL OF YOU IN MY DAILY THOUGHTS. TAKE CARE. KELLY S. - 07/19/00 14:02:45 Age: 30 Gender: FEMALE Where you live.: OK., USA Comments: I HAVE ALWAYS BEEN CONVINCED THIS WAS AN ENDOCHRINE OR METOBOLIC DISEASE, I HAVE DIABETES AS WELL AS THYROID AND PCOS DISEASE, AND I JUST KNOW THEY ARE CONNECTED. I HAD SURGERY UNDER BOTH ARMS TO REMOVE LUMPS AND DISEASED SKIN AND TISSUE, THE LUMPS STILL CAME BACK, BUT I AM GLAD I HAD THE SURGERY AS IT ISN'T NEARLY AS PAINFUL ANYMORE. GOOD LUCK TO ALL. WE NEED TO STAY INFORMED! Melissa - 07/11/00 14:00:38 Age: 33 Gender: female Where you live.: Sydney Australia Comments: Hi Andy It's nice to know I am not alone! I can relate to everything you said and what you were and are currently going through. I have been a suffer of HS for over 18 years, it has destroyed my personal and professional life. I have had endless operations here and in the UK but to no avail. It is just the last 6 months that a doctor here in Sydney is helping me and believes cutting me open is NOT the solution. So we are now trialing numerous antibiotics. Thanks for a very informative web site. If you hear of any NEW medication, please tell me. Tammie - 07/08/00 04:32:55 My Email:tferris@citilink.net Age: 39 Gender: Female Where you live.: Arizona Comments: Thank you for creating this web-site. I am a sufferer who sees the surgeon monthly for lancing. I have also had two surgeries to excise the sites. It just keeps coming back. Have tried all types of antibiotics with not much luck. Currently starting Acu ane as a last resort before beginning surgery to remove the glands. Have any info on Acuatane. Would love to here from you. Try Icthammol ointment. It is an drawing salve from the drug store. Smells awful, but it sure speeds up the process of drawing ut the bad stuff. - 07/08/00 04:27:53 Comments: Jeff - 07/02/00 21:25:34 My Email:wardjeff@wardjeff.freeserve.co.uk Age: 39 Gender: Male Where you live.: London Comments: At last, some meaningful information on HS that doesn't need a madical degree to interpret! I always knew that I'd find a use for the Internet someday! Thanks. I've had HS since around 1985 but didn't get diagnosed until 1996. Mine's not nearly as ba as some of your correspondents (yet) but gets marginally worse every year. My dermatologist says it will probably burn itself out when I'm in my forties so, despite the fact I don't believe him, I'm actually looking forward to the big four-oh. Got to h ve hope eh ? Thanks again for all the information. Good luck everyone. becky m. - 06/30/00 06:01:08 My Email:dbmckinney@msn.com Age: 28 Gender: female Where you live.: louisiana Comments: i was just dianosed 6/27/00 with h.s. i have been having theese boils for years, but doctors always said they were regular boils and they would go away. i finally found a doctor that knew what it was. i thought i was the only person with it.now i know i m not the only person. your story is very inspirational. thank you for sharing it. becky R - 06/20/00 22:01:55 My Email:bubbagrrl@hotmail.com Age: 28 Gender: female Where you live.: Tulsa, OK, USA Comments: HS has had a huge impact on my life since i was about 10 yrs old. i wasnt "diagnosed" until 1995...13 yrs later. i suffer from the stigma and was so pleased to find this page. im hoping to find a live discussion group to share with. thank you so very much --R BARBARA - 06/09/00 07:09:36 My Email:gary5150@webtv.net Age: 23 Gender: female Where you live.: kentucky Comments: I Am So Thankful For This Webpage It Really Has Been A Help To Me. I've Had This Painful Disease For About 3-4 Year's And Now I Have Some Relief knowing That I Ain't Alone. In Which I Hate To Hear That Anyone Has This Pain And Suffering Disease. And Thank s for So Much New Info.. It Really Has Helped Me. Now I Know A Few More Pain Reliever's Because I Did Not Know Alot About IT ... Thank's So Very Much!! SINCERELY BARBARA Karen Fritter - 06/03/00 10:44:24 My Email:t.fritter@worldnet.att.net Age: 49 Where you live.: Ohio,USA Comments: Thanks so much for this website! I am the mother of a 19 year old girl who has suffered for years and at 18 had surgery in the groin area. You have given us good information and reading these messages helps so much. Keep up the good work. Kandie H. - 06/03/00 01:47:58 My Email:1968tigger@excite.com Age: 33 Where you live.: Denver, CO Comments: Thanks!!!! The page is great. I've had hs since I was 15 but it wasn't diagnosed unill I was 30 when I went to a teaching hospital for the treatment of a leasion that was so painful I wanted to die. Thankfully since moving to CO my outbreaks for the mo t part are bearable(I think it's the altitude) Thanks for letting me know there are others worldwide suffering with me. André Dann - 05/25/00 19:29:44 My URL:http://www.dann-online.de My Email:Andre@Dann-online.de Age: 16 Gender: male Where you live.: Kassel, Germany Comments: Hi Andy! I just looked around for some DANN's in the internet and found your page which is very cool... So far my page is only available in German, but if you would like to contact me (perhaps) you can go there! I would be happy to be the friend of a name-partner -) -André Dann- Kris - 05/19/00 01:15:07 My Email:kris2433@mcleodusa.net Age: 30 Gender: Female Where you live.: Iowa Comments: This is an awesome site! Too bad it took me so long to find it! I've had HS since I was 12-13 but I never received an official diagnosis until 3 years ago. I think there is a correlation with being overweight and diabetic. I am Type 2 diabetic and when my sugar is high, I tend to have an outbreak. After my son was born, I weighed about 230, but in the last 5 years I've gotten back to my normal weight of 165, and I only have about one outbreak a year now. I have also noticed a personal correlation with hot nd humid weather. During the summer, I just try to stay inside where it's cool and dry. Wearing all-cotton undergarments has helped too. I traded underwire bras for loose cotton "jogbras" about one size too big, and that has made a big difference for me. have had terrible outbreaks under both breasts, under both arms, and in the groin area. I am truly blessed with a wonderful husband who understands this illness and is not put off by it. Unfortunately, I have severe scarring from all the outbreaks. Most f that occured before I was diagnosed with HS, and each time I would visit doctors, they would tell me it was anything from acne to ingrown hairs. I can't believe it took so many years to finally find out what's going on, but it's a great relief to know I m not alone. I've never met anyone else (to my knowledge) with this condition, so it's a great relief to have discovered and online community of folks who know what I'm talking about. If anyone would like to email me, I promise to answer! I think the bigg st part to dealing with a "hidden" disorder such as HS is to talk about it and deal with it. I wish you all health and happiness, and God's peace. MP - 05/09/00 04:28:54 Age: 29 Gender: Female Where you live.: United States Comments: Wow!! I've finally learned what has plauged me all these years!! I first noticed little lumps in my groin area at about the age of 10. I have gone to many doctors and have been told I have folliculitis and that there is no cure. Now at the age of 29 I ave it under my arms, under my breasts and all over my groin and buttocks. I have been humiliated for 19 years. My husband who I've been married to for 8 years now ( I've been with him for 12) has never seen me naked in the light. I will not wear a bat ing suit or sleevless shirts. It is so wonderful to find out that I am not the only person who suffers from this and that I am not disgusting. I am going to make an appointment with my doctor tomorrow and tell him all I have learned from this site! Tha ks so much!!!! Linda - 05/07/00 07:12:51 Age: 53 Where you live.: California Comments: Vanessa Alton - 05/03/00 22:50:08 My Email:alton2@supanet.com Age: 25 Gender: female Where you live.: Nottingham Comments: What a fantastic web page!!! I've suffered with this for 15 years and for 10 of those fobbed off by uncaring docters!!! Finally got some results and had my arm pit removed last year - the op was sucessful (at the time I thought it was one of the worst dec sions of my life!!!) but touch wood the HS has gone from both my arm pits but has now spread very badly to my groin.Taking Minocin MR now for about a year and I think I've now become imune to this as as I did Fluxo.I have another wasted vist to the dermot logist on monday but I now feel I can ask about other treatments thanks to your web site - THANK YOU!!!! kate mugo - 04/28/00 07:05:19 My Email:kate@eacco.com Age: 26 Gender: female Where you live.: Kenya

Comments: Thank You for the insight i gained when i surfed through this pages. it has been an inspiration and a blessing. Keep up the good work.

bill - 04/26/00 20:12:47 Age: 43 Gender: male Where you live.: Tallahassee, Florida USA

Comments: Enjoyed reading your site- I have recenly been diagnosed with hidradenitis and I've learned more about it today than I already knew-which was next to nothing. Thanks for the info

PATRICIABROOKER - 04/23/00 10:55:53 My Email:patricia.brooker@tesco.net Age: 55 Gender: female Where you live.: West Sussex UK

Comments: Hello Andy, am just mastering this new contraption Am still suffering from lumps and bumps and feeling awful. Don't go out much any more because of this curse. Would love to hear from fellow sufferers.

PATRICIABROOKER - 04/23/00 10:52:35 My Email:patricia.brooker@tesco.net

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michelle - 04/22/00 06:09:23 Age: 34 Gender: female Where you live.: los angeles

Comments: It's great to read your messages on the net. I'm 34 years old and developed HS when I was in puberty. It got extremely bad (even though I've been reading of much worse cases) when I was in my late twenties. Drs were very slow to diagnose and I was told some pretty off-the-wall info. Finally, at Cedars-Sinai, I had surgery to remove skin. It wasn't 100%, bur helped a lot. What helped most of all and put me into remission for years, was pure exercise. I have never been obese, but sometimes my weight fluctuates by about 10-15 pounds. The disease only hits when I'm 10-15 pounds above my ideal weight (110 lbs.and I'm 5'2") I was really into intense aerobic exercise for about an hour a day.I had absolutely NO PROBLEM with HS while on that routine for about 3 years. However, I had a baby about 1 1/2 years ago and can't get keep up my workout routine (I'm a single mom). I've put on 15 pounds and guess what? The HS is back. It is a VERY depressing disease that noone understands

Denise Jackson - 04/20/00 14:33:14 My Email:denise.jackson@ae-systems.com Age: 26 Gender: female Where you live.: Raleigh, NC

Comments: Thank you for the great info on HS. I have suffered with this disease since I was 16. I have had surgery 7 times (twice under each arm, 3 times around my pilonidal area). I lived with it, dealt with it, but now I am suffering with it in my groin area a d have been at a never ending battle for five years in this area. I went to the same surgeon who did the plastic surgery under my arms, but he said there wasn't anything he could really do until I got my diabetes under control and lost some weight. (I g ined a lot of weight having children and developing diabetes from the obesity.) I am trying to lose the weight, I have lost 25 lbs. since Jan. 2000. I am proud of myself, but I stay depressed because of the infections in my groin. I have counted at lea t 8 holes (lumps) in that area. Now, I feel that I am developing HS under my breasts and it is taking me over the edge about this condition. I am very sensitive about having this around the one area my husband loves. He supports me and has said nothing bad to me and I am glad that he is sticking by my side, but I feel if this continues to grow across my entire body, he will be appauled by it.

Denise Jackson - 04/20/00 14:20:33

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irela - 04/19/00 17:24:37 My Email:irela0206@aol.com Age: 29 Gender: female Where you live.: New Jersey

Comments: Hello I too am a "Victim" of this illness, have been for the past 17 years. I had this condition since I was 12 but Doctors never really knew what it was! I was embarrased and afraid to tell anyone about what I was going through. I was "diagnosed" when I was 24. It has only been 4 years that I have been able to give this illness a name. I thought that I was all alone out here but now I see that I am not. I wish we could all meet under better circumstances, however, it is nice to know that there are o hers who know exactly how you feel. Please feel free to email. Best of Luck to you all and never lose hope!

M. - 04/16/00 17:30:51 Age: 27 Gender: Female Where you live.: TX

Comments: Wow, I think I have finally found what is happening to me. I am in tears reading these stories because for so long now I thought it was me.. Like I wasn't clean enough or something. First happened in my groin as a young teenager. I had it on and off for y ars.. Worst when I was about 20. Then it seemed to clear up. Well now it's back and effecting my buttox as well as my groin. I have been too ashamed to go to a doctor. I too suffer in silence! I read on another page that it can go along with Thyroid co ditions.. which I also have. Both my parents have passed.. I wish I could ask them if they too ever suffered from this.. it would help so much to know. I guess, now knowing I am not alone, I can seek out a specialist. Thanks to everyone for sharing your stories.

ANGEL THOMPSON - 04/12/00 23:54:00 My Email:Blueangel1015024@cs.com Age: 29 Gender: female Where you live.: georgia

Comments: MY NAME IS ANGEL THOMPSON. I AM 29 YEARS OLD I HAVE BEEN DEALING WITH HIDRADENITIS SUPPURATIVA SINCE I WAS 12 YEARS OLD BUT IT WAS NOT DIAGNOISED UNTIL FEBURARY 2000.I HAVE 5 CHILDREN AND THIS IS VERY HARD.MY HUSBAND HAS BEEN REALLY UNDERSTANDING AND SUPP RTIVE. MY ARMS AND MY GROIN AREA ARE THE WORST PLACES, I ALSO HAVE THEM ON MY HEAD AND ON MY BREAST AND UNDER MY EAR LOBS. MY ARMS GET TO HURTING SO BAD SOMETIMES I CAN NOT LIFT IT UP. THE PAIN MEDICINE THEY GIVE ME MAKES ME SICK. THEY ARE WANTING TO DO S RGERY AND AT FIRST I HAD MY HOPES UP THAT IT WOULD HELP BUT NOW I DON'T KNOW IF IT WILL OR NOT. TODAY I FOUND THIS ONLINE AND I READ THROUGH SOME OF IT AND IT DID EASE MY MIND A LITTLE BECAUSE I THOUGHT I WAS ALL ALONE. PLEASE FEEL FREE TO E-MAIL ME WITH ANY NE INFORMATION.

terri - 04/11/00 17:20:14 My Email:terbearQQ@aol.com Age: 42 Where you live.: washington state

Comments: excellent site!! full of information i actually understood!! =) cant thank you enough!!! i'll be back!!!!!!

John B - 04/10/00 03:52:11 My Email:imjohnny@altavista.com Age: 43 Gender: male Where you live.: Ontario, Canada

Comments: Hey! You HS Guys and Gals, I have been searching for more info, thinking of setting up a report page for us. A page we can report any new findings, C02 Lazer seems to be promising, Also testing is being done with a drug called Finasteride. I also wonder about plain old execise to develope the buttocks area, which is where my HS is ruling, maybe the developed muscles would assist in restraining the infection. What about some kind of a poultice, you know the ones Grama use to make, maybe Herbs or ancient Chinese secrets, to draw the infection out. One herbalist I taked to suggested Pa de' Arco. There seems to be enough of us all with the same infection, with doctors that don't say much, and surgons ready to cut. We visited this site for the same reasons (thanks Andy) and I feel that if we want help we need to get out there and find it. Thanks ! John B.

Theresa - 04/09/00 14:12:04 My Email:Theresa40@cwcom.net Age: 39 Gender: female Where you live.: Portsmouth England

Comments: Hi everyone as you can see I now have 2 Email addresses this is the one my brother set up I am just dropping in to let Mark from Hawaii know that I feel deeply for him I know how you feel because I still get the lumps on my face neck and head also behind y ears as well as my groins armpits breasts stomack I also have some sort of infection I cannot get rid off on my leg it comes up like little blisters that itch so much you could scream, but as most of you know I thought there were only five of us with th s hs so as I thought I was really alone I would thank GOD I could see, hear, speak, had all four limbs even if I am in pain most of the time, and that my brain worked ok, it was only in this way that I could cope, mine you I would ask him to get rid of th s thing for me too. I do not know if anyone has been told but one doctor told me that at 40 your sweat glands start to shut down and this thing I do not know if this is true but I live in hope also for mark and everybody that have not been told when you w sh pat your self dry do not rub as this could agravate the hs well better go now thanks speak to you all real soon.Theresa

Mark - 04/08/00 21:53:52 Age: 21 Where you live.: hawaii

Comments: Im sad to see people in there 40's still affected by HS. I was hopeing it would go away after awhile. Guess not. Thanks for the info and the oppertunity to read about all the other suffers of HS Andy. Most of the stuff suggested I was doing already and well I must say for me There looks like no hope.. I have it everywhere possible even on my face and neck. There where times where I hated people with out HS cause they take for granted simple things like sleeping, sitting or even takeing a shower with ou crying out in pain. I must say I got it bad!! But we got to fight it thru right?? RIGHT!! Thx again ANDY

Theresa - 04/04/00 20:00:06 My Email:Theresa@hotmail.com Age: 39 Gender: female Where you live.: Portsmouth

Comments: Hi everyone I wonder if someone could help me, I have been told by another hs sufferer that who is not on the internet yet that they get disability living allowance and mobility allowance, But I know this person well and they do tend to extravogate a bit so I do not know if this is true, I know that they have other illnesses but they insist that they get it for hs, I hope that somebody can help me thankyou. My Email address is Theresa@hotmail.com also has anyone out their had problems with there hands and feet and asthma, I hope know one minds me asking ? Thankyou. Theresa

Alison - 04/02/00 12:39:52 My Email:alison4phil@hotmail.com Age: 38 Gender: Female Where you live.: Brighton

Comments: Theresa from Portsmouth. Why not set yourself up with a hotmail address. It's free and easy to set up. Go to www.hotmail.com and follow the instructions. Andy, apologies for using your site as a message board. Please forgive me.

Jenifer - 04/02/00 04:51:40 My Email:Jenysaurus@aol.com Age: 32 Gender: Female Where you live.: California

Comments: I have had this since I was 17. It has gotten worse since I have gained a lot of weight. I discovered my largest cyst las night. It is almost the size of a quarter. I have never experienced tremendous pain but just embarassment. I am glad that I have found this site. I am glad to know that I am not alone.

- 03/31/00 06:02:02 My Email:imjohnny@altavista.com Age: 43 Gender: male Where you live.: oshawa, ont. Canada

Comments: Good information, I have gone through three operations in the past six months, so far; skin grafts maybe next, I am not impressed at all. Your notes on HS are exactly the path I have been prescribed to follow, I am searching for more info and will try to forward any new findings onto you. Thanks for the read, it was great to find some info on our common problem. john.b. imjohnny@altavista.com

THERESA - 03/30/00 21:06:43 My Email: Age: 39 Gender: female Where you live.: Portsmouth England

Comments: Alison at Brighton, I am waiting for my brother to set me up with a Email address as soon as I get one will let you know. Thankyou for contacting me. My brother in law lives in Brighton at a place called Moulscoombe You could try contacting me on my brothers Email which is . Thanks again alison hope to hear from you soon. Theresa

jennifer - 03/30/00 16:10:50 My Email:ruthiejb@hotmail.com Age: 21 Gender: female Where you live.: mo

Comments: hey! my sister suffers from tis disease and Ihave checked out this site before and got some very valueable info from here so I just wanted to say thanks

Alison - 03/28/00 17:34:43 My Email:alison4phil@hotmail.com Age: 38 Gender: Female Where you live.: Brighton, England

Comments: Theresa from Portsmouth who didn't leave an e-mail address. Please contact me, we're nearly neighbours! Alison

theresa - 03/26/00 17:38:18 My Email: Age: 39 Gender: female Where you live.: portsmouth england

Comments: hi after suffering with hs for 39 yrs thats right 39yrs it was wonderful to find that iam not alone i have suffered with hs since i was 2 months old at 16 a consultant told me he only knew of 4 other cases like mine so you can imagine how i felt i thought that i was some kind of freak and was treated like one by a few doctors so finding hs on the internet was wonderful thankyou andy for setting up the hide pages on the internet.

c - 03/24/00 15:58:10 My Email:chollifield@chello.at Age: 28 Gender: female Where you live.: Vienna, Austria

Comments: I have suffered from this disease since I was 14. I have been to many dermatologists and have tried accutane, tetracycline, and other medications that didn't help at all. I have had "break-outs" in the middle of my back, on my earlobe, and many in the bik ni area. I have had 2 lanced, and 3 surgically removed, so far. It delights me to no end to finally find other people out there that have the same disease and know how painful and humiliating it can be! Thanks so much for speaking up!!!! (:

Carole Brennan-Allridge - 03/23/00 19:27:15 My Email:cbrennan@texas.net Age: 34 Where you live.: Austin, Texas

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arnie - 03/21/00 05:27:21 My Email:Alexis965@cs.com Age: 58 Gender: male Where you live.: florida keys

Comments: I'v had this since the late 60's, and untill 4 years ago no oneknew what it was. Since diagnosis I've had 7 surgical proceedures, including the very radical to my groin, both sides, my butt, from tailbone to testicles, it was the worst thing i've ever exp rienced,to prevent plastic surgery, i received daily whirlpool therapy, gradually tapering off untill ther was sufficient healing, for 6 months. I still have constant drainage in the genital area of my groin. I've used antibiotics for too long nothing rid the thing,but flair ups, where huge abcess swelled untill days of pain and hot moist packs would eventually help pop the area, givin some measure of releif.One dr. told me they were fistulas. From what I'e learned since proper diagnosis, was that ther is little other than radical surgery, at least right now that I'm aware of, me, so I'm very thankfull to find this site, as you can imagine, I could speak volumes about the effect, etc, of this strange problem, thanks.

l blevins - 03/19/00 07:57:21 My Email:ljblevins@yahoo.com Age: 37 Gender: female Where you live.: maryland

Comments: Thank You SOOOOO much for this great web site! It is truly wonderful to know you are not suffering alone...however, our fight for a cure would be the ultimate! my treatments have been 90% self-help. Like many of us, the dermo treatments (ie - topicals, ntibotics, etc) just didn't work! I have been living with hs for 17 years and just two years ago was also diagnosed with crohns disease...my specialist at johns hopkins has stated that a lot of the crohns patients have them both...so there is a solid correlation to the immune system! :-( I would love to hear from any other people that suffer from the two diseases??

Robyn - 03/16/00 20:14:01 My Email:rhuber@pica.army.mil Age: 35 Gender: Female Where you live.: Dover, NJ, USA

Comments: Andy, thank you so much for this page. I have been here approx 2 yrs ago. I too suffer from this disease severely. I am now in the process of having 1 HUGE one on my left side (waist), front, back, groin and back of neck. Man am I in trouble right now I have had this since early teens. Had surgery under arms, breast, and groin. Seemed to help somewhat. I have been on an antibiotic called Dynacin. That seemed to help me years ago, until I went onto Depo-provera (the birth control shot), this seemed to destroy my mind as to when I would be due to menstruate, therefore, I didn't seem to think it helped me anymore. Now I am off the shot, menstruating regularly and breaking out regularly so I am contacting docs as we speak to get this antibiotic again. I am so depressed, cry soo much and now am searching for depression meds to get me thru ALL the tough times to be going thru all at once. Hang in there Everyone ! ! We are not alone in this and we can all help one another, just chatting in email.

Amanda - 03/08/00 14:50:59 Age: 22 Gender: Female Where you live.: Canada

Comments: I am so glad I found this site. I realize know that I'm not the only one suffering from HS. I've had this since I was 13 yrs old, but I just found out from my doctor this year what it's called and how I can treat it. I have HS on my inner thighs and on my buttocks for years. My life has been ruined from this because I can't even wear a bathing suit to the beach or even wear shorts that come up past my knees. I'm afraid everyone is going to see it and be grossed out. My advise to anyone that comes accross a boil on their skin is to get it checked out by a doctor emmediately. Unfortunately I left my boils untreated for a long period of time and I'm paying for it know. It's scared me for the rest of my life.

debi - 03/04/00 22:49:22 Age: 43 Gender: femalr Where you live.: wisconsin

Comments: have had this since 15, not as severe as some of you, thank god. first groin one was lanced, by a gp, and cauterized - ow!!! did not help. internal medicinist went the antibiotic route which helped sometimes, but not always. did a 2 week stint in the hospital with antibiotics thru an iv - more drastic but still did not end it. was told to stop anti-perspirants and use alcohol and baby powder but the dead fish smell under the arms was not good! also was told to stop with the junk food intake, especially sweets, and it has helped it to a point - i do notice if i eat those things it will flare up. am curious about others theories re: the atkins diet a d less carbs may help - anything is worth trying. why can't someone so some research and find a cure or a big help? thanks for the site andy - it took me awhile of hunting to find you but it was worth it. my 15 year old daughter had one episode and we w ll go to the doc the next time but i feel i can go armed with information now - and keep her from going through painful exams/tests hopefully. would like to hear from others who have tried things to slow it down or stop it - what has worked for them and not. we are not alone!!

karen johnson - 02/29/00 21:44:54 My Email:kcsagg@yahoo.com Age: 53 Gender: female Where you live.: northeast pa.

Comments: my daughter and i both have this condition hers is more severe than mine. i was told that bad nerves plays a part in this . would like a list of doctors that specialize in this condition

Sara Joel - 02/29/00 11:20:44 My Email:sara_joel@hotmail.com Age: 30 Gender: Female Where you live.: Preston, UK

Comments: Well, now I know what I have. I've never been diagnosed with HS, in fact I don't think I've ever mentioned it to the doctor. I can't have had it that bad, because I've always managed to suffer in silence, while walking around like a scarecrow because I ca 't put my arms down. I must have been about 17 when it began with the odd, infrequent swelling under the armpit. But I thought it was just one of those things, not least because my dad has it too. He's only once been to the doctor, and was told he was all rgic to his own sweat. Within the last couple of years, though, I've developed more frequent, and multiple, swellings under the arms, along with some in the groin, and most recently around the ear. This has all happened since the birth of my son (he's 20 months old). Has anyone else had it get worse since childbirth, or is it just because I'm getting older? And is it likely to keep getting worse? I intend to make a doctor's appointment as soon as possible, by the way.

Sarah - 02/27/00 09:54:32 My Email:ronniedog@lineone.net Age: 37 Gender: female Where you live.: Nottingham

Comments: What a great site, I never realised that my computer could help me in this way!! Likewise, it's nice to know that I am not the only one who suffers with this awful condition. It affects me to the point where I no longer like to wear a bikini on the beach ...help!

Kelly - 02/26/00 05:29:26 Age: 39 Gender: female Where you live.: massachusetts, U.S.A

Comments: It's great to find out there are other people who suffer from this awful problem. I got HS when I was 12. had surgery at 19, didn't work. Mine is on buttocks,groin area. I find that using aloe vera{from the plant}on active lesions helps me until I can see my doctor. I have just started to use Accutane. Doctor thinks it will make me sympton free for 5plus years. I'm giving it A Shot. I wish they would find a cure though.

Heather Green - 02/25/00 07:31:24 My Email:Hgreen2154@aol.com Age: 31 Gender: female Where you live.: Iowa

Comments: OH MY GOD!!!!!!! I am so excited that I found this site! What a great place and very informative too! I, like everyone else am embarrased about this disease and all of the scaring that it leaves. I notice that alot of you are talking about your Dr.'s eing dermotologist. I have a WONDERFUL Dr. who is a Infectious Disease Specialist and is the greatest! I have been treated by everyone from a Primary care Dr to a Dermotologist and have taken every drug on the market as well... accutane, refampin, clin imycin, ect, ect.... and nothing seems to work at all! It is very frustrating and very depressing! I read that someone was asking if this disease is considered a disability, yes it is according to the Social Security Admin. I found a site last night th t linked to the SS Admin and it was listed there! I am now taking a form of tetracycline and metro cream and have little faith that it will help! I want to let everyone know that I have found a way to get my boils to rupture w/ out going to the Dr to ge them lanced - which is very painful! I had a really bad and big boil ( the size of a small orange ) on my inner theigh near my panty line that was so infected there were red streaks going up my leg. I went to the Dr to get it lanced and it hurt so bad felt like I was coming out of my skin! I vowed to never go back to get one lanced again and have not been back to get one lanced since! Take a wet, hot rag/towel ( make sure it is a soft one ) and wrap it around a heating pad and place it over the infe ted boil for 30/60 min and walla - the boils will come to a head and rupture on it's own! Just be sure that you put a good antibiotic cream on it and cover it w/ a bandage so it will heal. I told my Dr. about my new invention and he was ok w/ it. He sa d just to be sure that it was a moist heat and w/ the wet rag it is a moist heat! OK - I will quit rambling and wish everyone Luck w/ this nasty disease and hope to hear from others who have this - please email me!!!!! *************GOD BLESS YOU ALL******************

Heather Green - 02/25/00 06:20:52 My Email:hgreen2154@aol.com Age: 31 Gender: female Where you live.: Missouri Valley, Ia

Comments: Have had this disease for about 9yrs.

sonya - 02/24/00 04:54:42 My Email:sonya1@dove.net.au Age: 28 Gender: female Where you live.: whyalla sth aust

Comments: I have just found this web site on the internet and I am in tears I think with relief that I have found all this info and that there are so many other suffers and that I am not alone. I have just been diagnosed with HS after 11 years of pain and embarrasm nt.I get the boils mainly in the groin and buttocks area. I stopped going to doctors years ago until recently because of the pain of lancing and the scares left behind were to awful,and the doctors would give me all kinds of expanations as to why I was in this condition but they obviosly didnt have a clue..For years I was told that I would grow out of it, that it was ingrown hair follicles,that is was some kind of bug that has entered my blood system. now they tell me I have HS and until I found this page was thinking that this diagnosis was a load of crap as well.I thought that they had diagnosed me with something that didnt exist as there is very little info on it and no-one seems to have heard of it. I thought "thats just typical" there giving me the un around again.I am just so overwelmed that I have found this site. I have a groin and bum that looks like I have had some awful STD. I remember when I first met my partner of 4 years and how embarased I was having to tell him that we coulndnt have sex b cause I was scared of one bursting,not metioning how painful it would be and thinking how he must think I so discusting. Back then he wasnt so understanding but after being witness to several boils the size of golf balls between the cheeks of my bum and s eing me so distressed he has become so much more understanding even though he doesnt know what it is. I cant wait to show him this site then he might stop calling me fester. Actually I made that name up for myself I guess it was my way of dealing with it s I didnt have a name for it.Thank you so much for listening and just being there my heart goes out to all of you I have read every letter and Ill probably read them all again.Id like to see more sufferers from australia because they must be out there the just havent found this site yet...

Felicia - 02/19/00 23:03:08 My Email:fwoods@yahoo.com Age: 29 Gender: female Where you live.: Ft. Worth, Texas

Comments: I have suffered many years with this awful disease. There has been times when I just want to take a razor and scrape my armpits out. I have been to numerous doctors and they all say the same thing. No cause, No cure! Just recently I was offered the op ion to have surgery but after viewing all of the information at this site, I decieded against it. My sister had the surgery done under one armpit and she stil gets them under other arm and they also started coming under her breast since she had the surge y. My arms are really scarred from the wounds and from tape. I can't not believe that no one has taken the time out to find a cure or a real cause for this life changing disease. I have used every antibiotic on the market and none have seem to even tou h the problem. If anyone has any information on something that can relieve me of this, please write me back! No one that never had this could ever imagine what it's like. In the meantime I pray to God that He will help each and everyone of us. Felicia

inkydink55's - 02/19/00 02:47:04 My Email:tck@worldnet.att.com Age: 44 Gender: female Where you live.: Colorado

Comments: This is a great site i have suffered for years. But recently i was told that hs actually starts in the nose then it spreads to other areas. My Dr had me put a antibiotic in my nose and at the same time treated me with oral antibiotics. It seems to be help ng. he said they are caused when you have a cold mostly and it just travels to other parts. Tell me if anyone else has heard this.

Joyce - 02/18/00 17:18:10 My Email:jleggate@yahoo.com Age: 39 Gender: female Where you live.: Texas

Comments: This is a good site. I've had hs for 25 years. I've had one armpit removed and partial surgeries in my groin area. In my armpit I have never had a recurrance. I haven't been that lucky with the rest of my body. I use xerac a/c and take antibiotics an it seems to be the best treatment I've ever used. Xerac is hard to get used to but if you make sure the surface of your skin is completely dry it doesn't sting.

Rick - 02/12/00 03:12:41 My Email:Mc308@aol.com Age: 51 Gender: Male Where you live.: Pennsylnania

Comments: I to suffer from HS. I've had 3 operations in 3 years. Both right and left groin areas and right buttox. Very very painful. If anyone needs to talk feel free to E- Mail me. I would be more than glad to talk about it.

sherry - 02/08/00 16:46:32 My Email:sherry1277@hotmail.com Age: 22 Gender: female Where you live.: MO

Comments: I'm in the air force and have had this under my arms for about 9 months and i just now recently was sent to a dermatologists. and again they just keep giving me new antibiotics. reading this site helps me understand it better and especially because they have cut mine open to drain. thank you

David - 02/04/00 22:57:56 My Email:dratner@bellsouth.net Age: 51 Gender: Male Where you live.: Florida

Comments: Hi! I was diagnosed with hidradenitis when I was 20 years old, 31 years ago! I had to have both left and right axilla (armpits) removed. I still get flare ups 31 years later and unfortunately, there is no better therapy than there was 31 years ago: an ibiotics and/or surgery. I would enjoy hearing from anyone who would like to share with me. David

Christine - 02/03/00 19:09:03 Age: 33 Gender: female Where you live.: UK

Comments: After nine years of suffering and little help from doctors I have- today been diagnosed as having HS..It comes as a relief to know that I have a treatable condition but I still felt very alone with it. Your information has taken this feeling away from me nd more importantly given me hope.

- 02/03/00 16:02:21 My Email:ace@i-love-cats.com Age: 42 Gender: Female Where you live.: Southern USA

Comments: I've suffered from HS for 9 years. The best treatment I've found is by taking Vitamins & Minerals. The best are Flax Seed Oil Capsules(1,000 mg. each--take 2 or 3 daily), Ginger Root Capsules (550 mg.--take 2 daily) & Vitamin C (500-1,000 mg. dail ), alon with a Super Multivitamin.

candice - 01/31/00 19:49:12 My Email:angels22_2000@yahoo.com Age: 23 Gender: female Where you live.: georgia

Comments: Thank You for this web site. I started to have symtoms about 3 months ago and didnt know what was going on and have been to the doctors and today they finally told me about H.S. I will visit your web site more often now. Thank you so much!!!!

Julie - 01/29/00 20:26:47 Age: 26 Gender: female Where you live.: Virginia, USA

Comments: I feel like a weight has been lifted! I am not alone, I am not contagious, and I am not "Nasty"!!! I want to thank not only Andy for the page but all of you who have signed the book! It is good to know I am not alone! I do want to give credit to my doctor who not only diagnosed me on my first visit but also gave me the name of the disorder, told me where to look for information, and is currently letting me pay payments on my bill (lack of insurance!) There are some go d physicians left in the world!!! God Bless!

Maria H - 01/28/00 17:17:50 My Email:maria.huybens@joneslanglasalle.com Age: 37 Gender: Female Where you live.: London, UK

Comments: Thank goodness I've found you! Andy, thank you so much for the information and for providing a forum for sufferers of this depressing, yucky malady. I have suffered from HS for over 20 years, and was diagnosed 2 years ago by a Harley St specialist. HS affects my groin area, and the lumps are there almost constantly, although having read the messages left by other visitors I would say my condition is ot severe. In addition to being very painful, the lumps limit physical activity (some days I can barely walk, let alone exercise) and stop me wearing trousers, etc. The lumps and the scarring look revolting and are very damaging to my self-confidence. his disease really screws up my sex life! I have taken just about every antibiotic going, have used potions and lotions, and have had the lumps lanced and stitched - none of which seems to have had any effect. I would gladly consider surgery if it would be possible to a) remove the lumps for good, and b) get rid of the appalling scars. I also suffer from acne (for the past 20 years) and am seeing a dermatologist shortly. I'm hoping to be given a course of Roaccutane, which I first took in 1992 for 6 months. This really cleared up my acne and alleviated the symptoms of HS to a consider ble degree. The effect on my acne lasted for approx. 3 years afterwards, but unfortunately the HS flared up again fairly soon after I stopped taking the drug. I'm hoping a second course will have similar results. As for side effects on Roaccutane, I only suffered from dry skin (particularly bad on my shins) which was easily dealt with. It's wonderful to find a site devoted to HS, and great to feel that I am not alone. To all you HS sufferers out there, my very best wishes and hugs.

Sabee - 01/27/00 21:22:08 Age: 22 Gender: female Where you live.: Rhode Island

Comments: The information was very insightful and very helpful!

Jody - 01/21/00 02:04:04 My Email:gutpower@home.com Age: 40 Where you live.: Florida

Comments: Thank you so much, I have just had my first flare up and ended up on IV antibiotics. I thought I had some kind of cancer and thanks to a good DR he did biopsies to find out what was wrong. Now I do not feel so isolated since I have found your page. Thanks so much again for putting this page together. Jody

Brenda - 01/19/00 04:48:51 My URL:http://members.tripod.com/~Shiningstar__B/Shiningstar__B_index.html My Email:shiningstar__@yahoo.com Age: 35 Gender: Female Where you live.: Iowa

Comments: I want to say thank you for having this page I have a very close friend with this disease and it helps me to see more clearly what she is going through.. PLus the fact my mother I beleive suffers from this after reading all you have on it I now will ask h r doctor and see if for once they can diagnose her instead of telling her oh they are just boils they will go away... Again thank you so much and god bless you :)

paula - 01/19/00 00:56:50 My Email:marley2699@yahoo.com Age: 27 Gender: female Where you live.: birmingham, england

Comments: Just finding a HS page has made me feel better. I would be interested to know if any fellow sufferers have had plastic surgery to correct damage done by HS in the groin area. I am in two minds as to whether or not to go ahead with it. I'm not even sure the surgeon knows about HS! Can anyone help? Please mail me.

Julie - 01/17/00 06:43:35 Age: 56 Gender: Female Where you live.: Near Chicago, Illinois

Comments: I was diagnosed as having hidradenitis in 1974, when I was about 30 and had been married just over a year. I was advised not to shave the area, nor to use deodorants or anti-perspirants. Over the years I have basically simply lived with it, trying to ke p my underarm areas as clean and dry as possible. Fortunately, I seldom have outbreaks in other areas. A few years ago my son was seeing a dermatologist for the treatment of plantar warts, and I had her examine my underarms, as I was having an outbreak t that time. She prescribed a course of antibiotics, which seemed to have no effect at all, so since then I have not seen a physician about it and simply continued the treatment as before, cleansing and keeping it dry. When needed, I use Neosporin, whic soothes and helps heal the infected area. My husband has never been bothered by it, thank heaven. If I were to have developed this at a younger age, I think my life would have been utterly miserable. Reading some of the comments of other, younger, suf erers is heart-rending. Although I've had eruptions that swelled painfully and broke open on their own, having found this site makes me realize that my experience with this condition is quite mild compared to many, and I should count my blessings. I'm g ateful that this site exists, because knowing that there are so many other sufferers with this disease, and that we can help one another, helps enormously.

barry plummer - 01/14/00 01:14:43 My Email:barryplummer@hotmail.com Age: 50 Gender: male Where you live.: ireland

Comments: i suffered for 3 yrs i know the fear when you feel them starting. i took vitamin b12.a site on the net linked absesses and eczema with vb12.they seem to have gone .it could be coincidence. isuffered underarms and buttocks.

LaShya Little - 01/12/00 15:52:42 My Email:Pfugghett@hotmail.com Age: 24 Gender: Female Where you live.: Hephzibah, GA

Comments:

Deb C. - 01/07/00 21:38:47 My Email:corino4@southwind.net Age: 32 Where you live.: KS, USA

Comments: Just recently diagnosed with this, but a sufferer for many years.

Mary Burge - 01/04/00 13:03:09 My Email:burge@hit.net Age: 44 Gender: female Where you live.: Kansas, USA

Comments: I have suffered with this disease since the age of 17, although I was just told it had a name about 2 months ago. I am happy to see your page... it is very informative. Thanks for your effort.

Theresa - 01/03/00 18:25:25 My Email:TTREX8888@ AOL.com Age: 38 Gender: female Where you live.: San Antonio, Tx.

Comments: Finally I was told what this was by a knowledgeable Dr. during a routine exam. I always knew there were others as I have an Aunt and a sister who are midly affected. It took 27 years for someone to give me a name for this disease. I have treated myself all these years. It first occured when I was 11 and the Dr. then gave me tons of antibiotics to no avail. It was a lot worse when I was younger but that could be because I smoked. In the last few years it has only reared it's ugly head when my period is due and recently I went on the Atkins diet and haven't had an "episode" in over 6 months. Could a relationship between carbs and this disease be possible? I feel for all of us and am so glad I found this site. Thank you all for your stories, many are inspiring. Good luck and better hea

Nadine - 12/28/99 22:36:48 Age: 21 Gender: Female Where you live.: Canada

Comments: I never thought that there was anything like this until lately. The doctors just told me. I was 12 when I had my first operation under my arms and now I'v had 3. All in total I have had 9 operations due to this illness! I though I was alone, but now I o that there are other people like myselk who suffer just the same!!

Crystal - 12/23/99 19:09:33 Age: 27 Gender: female Where you live.: south carolina

Comments: I have had great use from your web site. I found it about a year ago and keep coming back to find more information about this terrible curse we have to live with. I have just recently found out that I have thyroid problems and I saw on the website that hey (HS & Thyroid problems)are associated. I hope everyone else find help on this web page like I did.

Rosanne - 12/20/99 06:29:57 My Email:s0nshine@aol.com Age: 48 Gender: Female Where you live.: LI, NY

Comments: Like most of the people who posted on this site, I too am thrilled to finally find a website for suffers of HS. I honestly thought I was all alone. I am amazed there are so many people with the same disease. I have my first outbreak under my left arm a the age of 20. They stayed over the years under my two arms. I would occasionaly get one in the buttocks area and groin, but they would always go away. About ten years ago, I got one on my lower left leg and thank God it is gone. They have been chron c under my arms since I was 20 with constant oozing. It is never gone. Now I have developed one in the groin area for almost 1 year now and that won't go away. I am always on antibiotics and topical cleaners and a lotion called cleocin. But nothing rea ly ever works. Does anyone out there have any pointers or help to give me? Like Darla, I am very thankful that they are in the areas where they can be hidden by clothing. Since I have found this page, I have been searching the web for more answers and can't believe some of the cases. I consider myself fortunate and thankful I can function with this disease. I keep reading about possible cures. Are there any at this time? Please feel free to write me and tell me about your experiences. Thanks for l stening.

Darla - 12/19/99 16:40:59 My Email:winpair@aol.com Age: 39 Gender: Female Where you live.: Columbus, Ohio USA

Comments: For the 1st time I have found others who suffer with this painful, embarassing, troublesome condition. It helps to see I don't suffer alone!! (Misery loves company?!I'm sorry there are so many of us!). I have had HS since age 15. My 1st surgery, (At age 1 ) was under both arms. I was a cheerleader and getting to the point that I could no longer raise my arms due to all the sores (some open and oozing, others just the painful lumps). At the time, the Doctors thought they were a result of using anti-perspire ts! As others have mentioned, after surgery they do come back (but I would do it again! For me, my under arms do not have as many now) and I have developed more sores under both breasts, in the upper interior of my legs, on the back of my neck and last we k had the largest, most painful sore I've ever had, lanced, on my upper buttocks. I feel fortunate that my affected areas can be hidden with clothing. (I have not worn a sleeveless item for 24 years and I own every swimsuit with the little skirt ever made )It has become second nature to buy clothing that disguises all my sores, scars and discolored skin. There are very rare days when I don't have an oozing, painful sore somewhere but I have just learned to live with it. I do believe that my outbreaks are l nked with my menstrual cycle. My home treatment is usually Neosporin w/pain reliever(a salve I put on the sore that does help a little and we all know most of our sores are in places that band-aids don't fit) but for me the sores either come to a head and bust, or after a week or so, seem to just dissolve, waiting to rear their ugly heads some other time. In terms of how I live with this condition, I have resigned myself to being grateful I can walk, (my last sore on my buttocks even hindered that at times ) I can think and I am alive with a diease that, as far as I know, is not live threatening. I am grateful for an understanding partner of 8 years who has never been "turned off" due to my sores and scars. I am lucky to have a cheery, positive outlook on l fe and if this is the worst-I CAN handle it! I was sad to see so many depressed folks but I think my self-esteem would be affected more if the sores were in visible places I could not hide with clothing and yes the pain can be so tiresome. When I was 1st iagnoised, back in 1978, the Doctor showed me a photo of a man with our sores on his face. I was scared to death that they would show up there on me but I am grateful and thankful that has not been the case. Thank you so much for the informative web page, links and for your personal stories. Love & Laugh... Darla

ws - 12/18/99 22:45:37 Age: 51 Gender: male Where you live.: Boston

Comments: For the past month, I have been reducing carbohydrates to lower my blood sugar. I have found that it has also improved the HS problem, I don't know if it is related, but after 35 yrs with HS. this is a great improvement, has anyone found high blood glucose related to HS ?

Richard McCurdy - 12/15/99 01:19:26 My URL:http://@aol.com My Email:MC308@aol.com Age: 50 Gender: white Where you live.: Derry PA

Comments: I have been diag, with hy 3 years ago.

Andy Dann (owner of the page) - 09/04/98 13:31:03 My URL:http://andy.dann.com My Email:Hidradenitis@thebarricade.free-online.co.uk Age: 21 Gender: female Where you live.: Farnborough, HANTS, UK

Comments: Hi all. I just want to say that I read all your messages, even if I don't get time to reply. If you want to talk to other people, try the HIDE mailing list - there are quite a few members and a lot of mail, but the digest version is available, and that ju t gives you one big message. If you're interested, the link is on my front page (given above). Love and healing thoughts, Andy.

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