Post

Living With Hidradenitis Suppurativa

Hello to all,

     I have been living with Hidradenitis Suppurativa since 1996 but technically I wasn't diagnosed until Jan. 28,1998. I won't forget that date because it was a day after my birthday. And on, Jan. 30 I had surgery to have my Sweatglands removed from under both armpits. The last 11 1/2yrs. have been a living hell. With each year I have gotten worse. It all started with my armpits then it moved to the breasts and the last 6yrs. have been the worse of all my buttocks & groin area. The groin area has been one of the worse parts of all this for me. I have so much damage to the area that I am reluctant to date or even think about a relationship with anyone. I have also been hospitalized several times because of secondary infections I have gotten to my legs, I can't even begin to tell you the pain from that. I will tell you more about the legs issue cause most people don't understand that since that area doesn't sweat. Well its not Hidradenitis Suppurativa that infects my legs but its a secondary infection caused by HS. It starts as all flare ups do, then it gets bigger and it eats away at the skin and flesh. Eventually, a big area of my legs will have no skin. I have to go on IV antibiotics, so I am in the hospital for several days, which I am sure everyone on this site is very familiar with (IV Antibiotics). Then I am sent home for another 4 to 6 weeks on IV antibiotics. I have been through this process 7 times and I pray the seventh time was the last! I have been to so many specialist and I have loss count on how many different medications I have been on. Since being diagnosed with HS I have also been diagnosed with Degenerative Osteo Arthritis and Depression. Some doctors have said they think this condition is hereditary, which I do believe is true since my Sister has also been diagnosed with HS. I have been going through this so long and read so much about it I feel I know more than the Doctors most of the time...lol

I am unable to work because of my condition so I have been on Disability since Sept.1999. The 1st time I applied on my own without a doctors report so I was denied. Then I applied the 2nd time with my Doctors Disability report and I was approved quickly. Having that report from my doctor made the difference. Sorry to say that in recent years it seems to be harder for others with HS to get disability. If the people in the Disability offices who make the decisions could live with HS for one day when we're at our worse during a flare up I feel approval would be much easier. I feel so alone sometimes and that makes each day a struggle but I will continue to fight HS everday until the battle is won.

Hidradenitis Suppurativa is a chronic, debilitating and painful disease but it does not make us any less Human.

If there is anyone else like me who feels alone and you need someone to talk to who can understand what your going through. Please leave me a message and I will contact you with my personal email address.

HoneyyDipp HoneyyDipp 36-40 35 Responses Apr 18, 2009

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Hello, I have h/s and have for years. Am going to surgery under both armpits in 3 weeks. Im terrified, please let me know if any of you have had this procedure.

I am also a Hidradenitis Suppurativa sufferer. I have found many remedies that have allowed me to be flare-up free for 1 1/2 years. Please visit my blog at hidradenitishealing.blogspot.com for updates, HS friendly recipes, and support!

Hello. I totally understand what your going through. It has been a hard journey for me as well. But if we have to live with it then its important to deal with it because we have choice. As soon as depression began to set in, I took to meditation and Yoga. It has really kept my stress levels low after practicing these relaxation techniques. I have been able to think clearly after that. I found this doctor in Michigan. His name is Iltefat Hamzavi. I traveled all the way to America only for him. He has had more that ten years of experience in dealing with a condition like this. Nd-yag and co2 lasers are something he is trying on patients like us and it has worked very well. It has worked for me. At least the pain part of it is taken care of. If you don't live in michigan, may be you can ask one of your local doctors to co-ordinate with Dr.Hamzavi and work things out. ! Do let me know if you need anything else. All the best to all of us !

Please feel free to contact me any time you need to vent. I have been down a similar road.

Hi. I have HS and I literally hate myself. I hate my body. I feel so ugly and gross. I've had it for about 7 years but it's just in my groin. It developed in my early 20's and I was already married. My husband never says anything but I just feel so ugly. It hurts worse than the pain. Reading others' posts I wonder if mine is just going to get worse and worse? Is there any hope?

I have had the same surgeries and originally diagnosed myself with HS by reading online, so I completely understand how you feel about knowing more than the doctors. When I printed what I had read online, I brought it to my doctor and he referred me to a surgeon. The surgeon knew exactly what it was when he saw it and explained to me that he had another patient with the exact same problem, who had her sweat glands removed as well. I wish I could explain the extreme pain and embarrassment I have gone through in the past. I have had doctors tell me that the reason I have this, is because I don't wash properly. Also I have been told that I shouldn't wear deodorant because the antiperspirant is what is causing my flare ups. I don't understand how that would affect my breasts and groin area.. My breasts are not the biggest problem, but they have been ultra sounded and revealed so much scar tissue beneath them that I probably will never be able to breast feed. It's definitely my armpits though that have plagued me as an adult. It started in my groin area as soon as I hit puberty, and ever since then, it's gotten worse and worse. The knowledgeable surgeon I went to said that the flesh right underneath these flareups is dead and gray in color. He said that they dig tunnels and go further and deeper into your body until you remove all the infected flesh. My question for everyone who has this disease is something I have asked the doctors many times before, and they tell me it's not possible. If you are menstruating, or right before you are, or right after, is that when you get your flare ups? With me, it's pretty much the same day that I start my period. I was wondering if maybe hormones have something to do with this. I would love to get down to the bottom of it one day.

Its nice to know you are not the only one in the world with HS. I feel alone even know I have a family. People looking from the outside cant see a scar so they don't understand your pain. I have had this since the age of 17. I am now 32 and was diagnosed with HS in the last year. I had a full hysterectomy and after I recovered I went from 1 outbreak to 6 or 10. Every doctor I see doesn't know what to do, so they send you for more tests and operations. All I want is for them to look at me as a human. They don't understand the pain and tenderness in my groin area. When I get to a breaking point, and can't take the pain another day I have to go to the hospital. I'm not sure what is more embarrassing having a doctor see it, or inject the areas with freezing ? I ask myself how is this doctor helping? It's pain for pain and emotional scar. When I'm done and walking out the door, tears fill my eyes ..... When will this end? When will someone help? Why me after everything you have taken from me? Please I beg you to email me. I need to know I am not alone.

I have suffered with.this.since i was 11 but wasnt diagnosed until 23. I had surgery

God bless u !
Thank u for the invitation, I would appreciate staying in touch.

How is the book.coming along?

I am a thirty one yr old male. I have HS, it started as cystic acne when i was 17. About 4 yrs ago the areas that where inflamed never when away. Constant draining and horrible pain followed. Its on my upper tailbone which is where it started. Now on both buttock cheeks. I have tunnels also. Recently i just couldnt take the pain so i went to the er where they opened the abscese to drain. I have taken every antibiotic you could imagine with no help from them. From all internet talk and other suggestions i decided to try a cocktail of zinc,acai with green tea,turmeric and cod liver oil supplements with a meal each day. Sometimes that thought of death would only ease the terrible pain and itch HS causes. Not to mention the odor it causes. My job requires that work outside and heat is the worse thing for HS.

I also live with this everyday. I work and they act as if I make it up. I am tired of hurting (private area) I wish there was a cure. If I ask for a day off, it is like pulling teeth. I dont make it up, it is very painful, and wish they would understand. You may as well think no one wants to hire you and then you need a week here or there to treat yourself, and it still comes back. I am tired, and dont know what else to do.

I can definitely relate to your struggle. I was diagnosed in 1998 and since then have had multiple surgeries. The last flare up resulted in a 4 day hospital stay due to cellulitis. I am so frustrated because it's hard to work because aside from the pain there is the possibly of another surgery lingering. I had no idea that HS was a condition that qualified and may consider filing as well. Thank you because I feel like I'm not alone in this struggle. Recently I've started taking depression meds as well so I hope things get better.

i have hs for years from 1990 somthing .i went to doctor after doctor each thought it was somthing differnt each one squeese each sore or put a long qutip inside it is hard to let them do it beacuse of pain thats just a culture test .when i frist had hs it was only in armpits ,people say its because of wait i was one fourty i was 11years old when it started now 10 years later its i the armpits and grone area .my sores leaked so much i had to wear four big bandaids .i still living with hs as there is no cure .useing epsin salt in a bath helps and dial gold bar too but you have to becareful it can dry out the rest of your skin so i also put oatmeal powder bath too in the tub .when i have a cist flare up i use vics and then heating pad .it takes a while but works.

I also have been living with HS for 10 years now. It took 9 years for a doctor to diagnose it!!! For 9 years I was left with SO many unanswered questions & that alone is mentally damaging. When I have to go to the ER because of this, I feel as if I am more educated than the doctors are. Although I would never wish this on my worst enemy, It's really nice to know there are other people out there who deal with the same things I do. I have also been told it is genetic, but have yet to know anyone in my family who has it. I have a 2 year old daughter, & the thought of knowing I could pass this down to her just kills me. Every day I worry for her future. I've been told the flare ups tend to start sometime during puberty. Which makes since because my first flare up was at age 16, & the older I get, the worse it gets. The specialist I went to said losing weight can help control it some, but since being diagnosed I have lost about 20 lbs, yet it still gets worse. I am very blessed to have my fiance in my life. He's always researching HS to see if he can find some new info on it. If anyone reading this needs someone to confide in, please feel free to message me. I know how mentally damaging this disease is.

I've been living with hs since i was 16. I'm now 28. I had no idea how many people there were living with this. I use to feel alone, ashamed, and worthless. I lost jobs, girlfriends, repect from my family members because of the depression i was going through. The pain that this disease brings i wouldn't wish on anyone. The surgeries, the pills, the sleepless nights, the burn, the depression takes a toll on every part of your body. I comfortable with myself to say i wanted to take my own life. I walled off myself from the rest of the world and felt there was no end in sight. I've had a real ****** upbringing, where almost everything i know today is a result of learning from making a lot of mistakes. I'm homeless now, staying place to place, working in between flare ups, but i couldn't be happier. I was unaware of how many people were going through the same thing. I don't feel alone anymore. The pain from the bumps are nothing compared to the psychiatric toll that it takes. I still get them pretty bad in the normal places i.e.(neck, groin, foot, thighs.) but just knowing your not alone makes a world of a difference. Thank you and everyone else with hs for telling your story. You definitely saved a life.

I completely agree with you. I'm only 16 and i have already been through most of what you are describing. People think im just being lazy when i don't want to go to school or walk downstairs to get something to eat. But its really because of how bad it hurts. And i have fallen into such a deep depression that my relationship with my mom and even my best friend is becoming strained. For a while a few months ago i used to wish my life would just end so all the pain would be over. But thankfully because of how much it would effect everyone i love in my life i would never even think about killing myself. But i am practically losing my mind trying to find a way to deal when no one around me can even begin to understand what i am going through. Just hearing stories like yours that i can really connect to is helping a lot. So thank you very much!!!

Hi HoneyyDipp please contact me laine41 so we can chat...Thanks

I have HS also, though I am still working. I am male, and I guess it is rare for males. I miss allot of work due to flare ups. I did the medication thing, but nothing helps so I gave up on it. I do go to a surgeon and have him drain but have not done any removal surgery since most of what I read says "It came back". I stopped going to other doctors all together. <br />
<br />
I am at a loss - I gave up long ago. It is only a matter of time before my job says enough is enough, and at my age unemployment is not a good thing. (Its not a good thing at any age). <br />
<br />
No one understands - only those like yourself. I have not had to be hospitalized for a secondary infection yet. Though I am sure it is in my future. Recently my skin sometimes feels like it is burning. Not sure if it is related.<br />
<br />
I am married and I know I don't like letting my wife see it. I try to hide it as much as possible. I sleep on the couch most of the time since I have trouble sleeping and it wakes her up. <br />
<br />
This condition affects so many areas of life. Health, relationships, mental health, work, etc.... <br />
<br />
Anyway - you're not alone. Thanks for sharing your story.

Hi Honey, my name is Tara and I suffered from HS for over 20 years. I'm writing a book about it, and how I got it to go into complete remission, and I need personal stories like yours to include. If you, or anyone else, is interested in contributing to the book, I would really love to include your stories. I would love to know 1) how long you have suffered, 2) what stage(s) you are in, 3) if you've found anything that works for you, 4) what "schemes" you've fallen for over the years (we all have, I know I did) and 5) some personal info about how HS has affected your life. Please contribute! We need to raise awareness of this craptastic disease. I just joined this site, so I assume you can reach me by clicking on the Primalgirl link, otherwise you can reach me at my website www.primalgirl.com

I am very interested in ur book, or things you are doing for it.. I have been mildly battling hs for quite a few years n recently became severe .. It is tough, scary, painful n confusing:/

I'd love to contribute. I'm 17 and I've been battling hs since I was in the 6th grade. A large number of people with hs tend to be over weight and I have been active and fit all my life. I'm a gymnast and I hate that its so painful to do something I love. Also I've been told that hs is hereditary but my mom is adopted to we have no medical backgrounds. She doesn't have it either so I have no clue how I got it. I hate not being able to dress like other girls because jeans hurt to much. I'm no longer happy when my flare ups go away because I know they'll be back in just a day or two. I hate not being able to go to the beach with my friends during the summer because it kills me to not only wear a swim suit but to also show my scars. I hate not being able to go out to the mall because walking hurts to much. I hate being scared of pursuing a relationship because I feel so ugly. I hate not being able to just be a normal teenager. If no one knows the cure then all I want is the answer to why is this happening to me

Well, I'll be frank, I am now 25 years with Crohns and HD. With Crohns, it was onset with Accutaine. However, after research it was told that HD and crohns are like family. I had vulvalectamy at 25 and arm surgery. Skin patch removed from hip to place over arm socket--so no sleeveless clothes for me. I'm trying to find a doctor on the Maryland area who can treat--any help out there is appreciated. Summer is not good for us HD people, after we lost power, two great HD boils appeared in the crease of my leg & thigh. What pain--with the Crohns , i found sometimes cannibus takes away the bathroom routine because it slows down the system.--however it'd be great when they legalize it. I'm gonna try the emuaid to see if it helps. Right now, I'm using SMILE'S PRID and BACITRACIN (BOTH AVAILABLE AT Walmart) then I take a curid large gauze bandage and place over the area. That with aleve helps.

I have been an HS patient in Maryland for 10 years &amp; have a fab doctor at hopkins. He is aggressive if needed but well worth it. E-mail me for more info...jsandn@gmail.com

Ughhh I am so Scared right now. I was diagnosed with Squamous Cell carcinoma the day after i turned 30. At the time of the surgeon consult i had them look at a boil or cyst in my taint region that i had been dealing with for almost 4 years. I never had insurance when i noticed it so i never had it checked out. Anyways they looked at it and had me do an MRI to rule out Fistula which it wasn't. I have been diagnosed with 4 different things so far and just yesterday they said it was HS. After the first meeting with Colon Rectal and a Dermatologist I soon for some reason broke out with 3 more spot. I immediately popped these but those came back. I have had one spot for 4 years so seeing more i rushed my self into surgery. I feel i did anyways but the doctors at the Mayo supported my choice. I was told they were going to leave these open and not stitch them up and that i would have to pack the wounds for a few weeks to allow them to heal from the inside out. I came out of surgery and they stitched me up which 2 weeks later resulted in the most painful infection and flare up ive ever had. It was in the same spot exactly the same spot. FML I squeezed the hell out of it and cleaned and kept it clean for another 4 days until i called and demanded that i be seen. I drove 1.5 hours and waited 4 hours to be seen. They cut me back open on the spot let it drain and took out the stitches. They packed the wound etc. Its been nearly 6 months since the surgery and this ONE spot has flared up 3 times the pain is so intense i cry. Now the wound wont close all of a sudden since the surgery its only closed up with a thin membrane no thick scar tissue. I have been packing the wound for almost 2 weeks now and i can still fit a q-tip in the hole. Please anyone help me get this thing to vanish. I seriously thinking of cauterizing this hole it wont stop pussing and bleeding so i know if and when it does close its just going to fill up again and ill be bent over in pain in a week or 2 at best.HELP PLEASE! Short of buying what has been recommended on this page "emuaid" which is 53.00 bucks which i don't care i have tried staph infection gel which does help for the pain but the best for that i have found for that is that bikini gel it has lidocaine in it so it numbs it for a few hours or so. I have tried silverdene cream, neosporine, Cortaid. Dr's have put me on tetricycline, and now Doxycycline Hyclate 100mg. I am hoping that this will work but the dermatologist even said it wont resolve the issue permanently. She said i should go back to colon rectal the ones who did the surgery to set up another which they will have to remove it completely. I dont want another surgery. The Mayo messed up my first surgery and this one i need to find a plastic surgeon to fix the batched circumcision from the removal of the cancer. Ughhh please help i am going to jump off a bridge if this gets worse i think the cold water will help with the pain.lol i know that wasn't funny but all jokes aside i am so lost and in pain it sucks but i am glad i am not alone. I know i may not have it as bad as most of you but i could really use some help. I am not over weight but i have gained 20 lbs this past year which is probably due to my poor diet which i am changing or at least trying to. I am going to try and keep this opened as long as possible so it doesn't fill back up since it has been a lot less painful this way.

I have been battling HS for 12 years now. Doxycycline seems to help me. If I have an outbreak, usually one or two daily doses is enough to get it back under control. I am a 32 yr old female living in Florida and cannot seem to make others understand why I don't often go to the beach or why I am so particular about my bathing suit, tankini with boy shorts and usually a t-shirt or cover up on top. I am not overweight but I have HS in multiple locations (under arms, inner thighs, butt). Since recently ending a long term relationship, I have to desire to date, mostly due to my HS. I don't want to have to explain to someone else what it is, how much it hurts and how embarrassing it is to live with. I have had to have one reoccurring area surgically lanced several times only to learn that it has tunneled through my tissues surrounding my tailbone. At it's worst that cyst has gotten to baseball size, I haven't had an issue with that particular area in about 6 years but worry regularly about it coming back. My other outbreaks are contained to easily hide-able areas but still excruciatingly painful. This is a horrible disease that most people know nothing of. The most accurately I have heard it described was as the leprosy of the 21st century. Good luck with your treatment and no you are not alone.

I have had HS since I had my son who is now going to be 8. I have it under both arms, under both breasts,butt,crease of stomach and private area and thighs. Went to ER in soooo much pain and they gave me tylenol......wtf is that supposed to do for me??? This disease is no joke...noone understands the pain EVERYDAY. No one understand what its like to have to watch what color shirts I wear..or the style, because im scared someone is going to see the horrendous underarms...or the lesions are gonna bleed or bust....ugggghhhhh. Im embarassed...and alone in this........sometimes i pray at night that I dont wake up because im tired of being in CONSTANT PAIN.......

Awwwwww mag me if u need to talk... I'm battling the same thing.. Only on my butt n underwear line areas. But I do understand the pain.. It's awful:( I've never felt anything like it before, and I'm a mother:/

MSG ..

i know what you are talking about i've had since i was 11 years now 10 years later still i keep looking for the ansewers ,the pain is so strong .i have one right now on my arm not pit arm every shirt i wear i have to streach to go over my sore .the it started to leak in shower now have too put big band-aid made out of lots of guse and tape .its soo painful .not to mention the rest of my sores in armpit butt and privites the pain they sayed that its because each sore is on a nearve ending yes very painful

I have Hs and Im like you people really dont understand and when you tell people they think your crazy...... I am looking foward to chating with People like me on this stuff

I am in tears reading this i was just told i had HS 6 months ago but i have dealt with it since i hit puberty and i am now 29 years old almost 30 I have it under both of my under arms, both of my breast , in the crest of my stomach i also get them in my private area and buttocks, i also get them on both of my thighs. I was told by a E. R doctor and this is after i had went to a family Dr. and they told me i had a yeast infections. No one else has it in my family. I feel so alone and i am very ashamed of my body. No one understands the pain i go thur on a daily basis, or how ugly i feel i don't know what to do.

i have hs for 10years its hard .very painful .,you are not alone ,people just don't want to admit it ..

I have noticed that for a lot of women this started when they hit puberty. For me, it started when I was about 6 years old..and I have been living with it ever since. I was put on Accutane for a while and had to have injections into my groin to stop the swelling from occurring. Its healed up quite a bit but I still suffer from it. I'm all discolored and scared from it. Because of my job, I can't seek treatment for it. I notice that if I wear bikini underwear I almost immediately start to get the bumps again. I cant wear anything super tight and I really have to watch my weight and eat healthy. I think thats really helped me. Its a terrible disease and I hate knowing I have to live with it for the rest of my life.

i had my bilateral surgery in 2009, have had no flares under my arms, but now have a war going on in the crease of my right thigh and buttocks! I wear scrubs, i cant have these things breaking open and ruining my scrubs! anybody please help with suggestions on how to care for them in the private area, i have researched the web and have found nothing that helps. and being intimate is getting really hard when the pain is too much to bear with the open wounds this leaves behind which dont seem to heal, and why do the site itch insanely and hurt at the same time? im gonna take a razor to it any day now!!!! THIS IS A LIVING HELL!!!!!

I can't even begin to desribe this disease and how it has been a burden to me since I was 11years old. I wasn't diagnosed until I was about 16years old. Relationships are not even possible because of the embarrassment of lesions. I pray every day for God to give me strength to deal with this horrific disease.

I have been dealing with this disease for 17 years and understand how awful it is. I have kept my pain and feelings hidden for 17 years but now I have opened up and try to educate those around me. I know how alone you can feel. I know what it is like to not be able to pursue relationships. I know how trying it is to keep positive when you keep being beaten down with pain and loneliness.<br />
<br />
I am here as your brother in this battle. You can always talk to me about anything no matter the time or day. You are NOT alone! Mbostami@hotmail.com

I am a sufferer too. Suffering doesn't quiet explain our plight sufficiently right? I was just approved for disability after 5 months of waiting. I have read many stories of it being years of battles. It is a financial relief for my family. I have had this since I was 11, I am now 37. I have had countless incision and drain, antibiotics, surgery and natural attempts to heal or sooth. Nothing helps. Nothing. I have been through fertilitu treatments that the endo said MAY help but didn't. She told me to try a homeo route since science only knows so much. True. And many drs are not so understandable, caring or knowledgeable. I wish you all no flairs and much relief.

i have hs verry bad some one email me im so lost i hurt and some days i wish i was dead thats ho bad it is for me this my email the1toblike@yahooo.com

omg. i dont know where to start....im so happy to know that im not the only one out there....ive tried dipping my self into clorox...lol. no antibiotic helps me...i always need pain medicine..but ive been living with this for 12 years...my underarms are ugly. but what can i do. the surgeon said theres no point...i hope i dont get it anywhre else...so far its realy just my underarms...i know that i have to shave in the private area. cause i have alot of ingroin hair atleast thats what i think it is..lol...so i would love to hearl stories . things that i havnt tried...i do try to excercise 3 times a day to elevate a sweat but i know thats not gonna help....lol